Very, very sorry for the lack of updates. You can usually assume that no news here is good news. I think I'm usually pretty good at sharing the good and the bad, but it's been really busy the past two weeks! Here's a recap:
Monday, June 3: The plan was for Eli to be monitored throughout the weekend and get a chest xray Monday morning. If the xray looked good, we could go home that day (with the JP drain in place) We went for Eli's xray early and then waited. We played in the playroom, we walked the halls, and we waited. After an hour (yes, it seemed much longer than an hour) we heard that his xray showed there was still an effusion, but it was smaller. That was very encouraging. Sara (surgical nurse practitioner) came in and said that Dr. Abraham would be in soon and we'd find out what his decision was. Fingers were crossed that we were going home.
Dr. Abraham came in and said he was pretty pleased with the xray. He felt the fluid showing on the film was probably due to the presence of the drain itself. The only way to fix that was to remove the drain, repeat chest xray in the morning and hopefully go home that afternoon. Until I heard him say Eli would possibly go home Tuesday, not Monday, I hadn't realized how much I wanted to go home. My stomach actually dropped a little in my abdomen. What Dr. Abraham was saying made complete sense and it would be much easier to have Eli at home without a tube hanging from his lung cavity, but darn it I was ready to go home!
Eli was given a dose of morphine and Dr. Abraham pulled the JP drain. This was the third one I'd seen removed from him this admission. The inner part of the drain is as long as my hand (and I have long hands!). It's amazing to see that come out of his little body. After the morphine wore off, we had more play time and watched the Pacers lose to the Heat that night.
Tuesday, June 4: Eli's chest xray was done early again and we waited. I was very nervous. We'd been to this point a couple times and the result was we were still at the hospital. I was nervous the xray would show more fluid which would mean another chest tube and several more days at the hospital. I ordered breakfast and we hung out in the room for a while. Patty, the nurse practitioner on the unit came in to do her daily exam. She said the xray looked even better than Monday's. I was filled with relief, but wouldn't let myself think about it. The decision was not hers, that had to come from Dr. Abraham.
Eli wanted out of the room so we made plans to go to the play room. As we were getting ready, we had a visit from the therapy dogs. We met them in the hallway and petted them. As they were leaving, Sara came to us. She said that she had talked to Dr. Abraham about the xray. We were already in the hallway and Sara squatted down & told Eli she had a question for him. I knelt down beside her as she asked him if he wanted to go home today. I felt weak with relief and leaned against the doorway. My persistent son who didn't understand the real meaning behind her question simply replied, "No home, play room." Sara turned & asked me if I was ready but I was too choked up to answer. I'm really not a crier, but the feeling of knowing this long ordeal was nearly over and we were actually getting to go home was overwhelming. She got teary-eyed too. As she & I were in the doorway crying together, we realized Eli was headed down the hall. Apparently he'd given up on us and was going to the play room! I retrieved my son and we went over some of the discharge instructions. It was going to take a while to get everything together on their part, some time on my part to get the dorm room packed up, and Eli was getting very impatient for his long-promised trip to the play room.
Off to the play room we went. While we were in there I started talking about home. He kept telling me, "No home, play room." This didn't bother me at all. In fact, it was the opposite. Initially he was very apprehensive of the hospital and the staff, but by this time he was comfortable and it showed. He knew several nurses by name, many more by sight, and had made many friends who worked in departments whose jobs had nothing physically to do with him (Sarah in housekeeping, Derrick in supply, and Katie in dietary). It was comforting to us to know he had finally let some of his guard down and knew he could trust these people. Also, we knew once he got home he would adjust and would not beg to come back to the hospital play room. So we played. Talking of home did nothing. Then I said, "Do you want to go see Daddy & Bubba?" That did it. "Daddy? Bubba? Alba?" He was obviously showing me that home is truly where the loved ones are, not a place on a map. We built on that excitement and were able to get back to the room pretty quickly. I kept telling him we had to take our stuff to the van so we could go see Daddy & Bubba.
It took a while to get the room packed up. Because it was such a small space, we had never really unpacked, but we had stuff on the shelves, on the walls, in the fridge, and in the bathroom to gather. Eli was very unhappy as I took down the cards people had sent us and the pictures Zachary had drawn. He was crying and actually took some off the stack and tried to put them back on the wall. I had to keep explaining over and over that we were taking them with us to Daddy & Bubba. Finally I got him in his crib with a movie and some snacks. Someone had brought us a wagon (a very large wagon!) to make the trip to the van easier. It definitely helped...three times! As I was packing, Dr. Abraham came in. He and Eli gave each other the once over and he discussed some of the discharge instructions with me. As he was leaving he tried to shake my hand. I said no and leaned over to hug him. He smiled and hugged right back. That's a big deal with him because he's the type of doctor who cares from a distance. That's okay. He's in a field where you can't let yourself get too attached to all your patients because a lot of them are lost despite the best skilled efforts you give. I get that, but I also got a hug!
Once the nurse had all her paperwork and verification from our home health supply company that the equipment we needed would be at the house before we were, she could wrap up our discharge. The last medical thing we had to do to Eli was pull his PICC line. We waited until the very last minute just in case something fell through and we had to stay. Those are not easy to put in and we saved it as long as we could, but it was finally coming out. Eli screamed the whole time. I'm sure it didn't feel good, but his screams had nothing to do with pain because they started before he was ever touched. However, once the bandaid was on and he was convinced we were done, he was buddy-buddy with her again.
We were finally cleared to leave. We were about to walk out the doors. I had left the unit many, many times in our weeks there, but never with Eli. Now he was leading me. Several of the nurses had been stopping by our room throughout the morning to say good-bye to us but now we were actually heading out and we got to say good-bye to them! We had a goodie bag for the staff with microwave popcorn, Twizzlers, and assorted cracker & cookie packages. We also had a card in there thanking them for all the care, friendship, and support they had provided. While shopping for those cards (weeks earlier) I decided the card for the third floor staff needed to be a "thank you for your hospitality" card instead of a general thank you! Eli gave a couple hugs, several fives, a few fist bumps, and many bye-byes. As we walked down the hall to leave, Eli started to turn at the elevators used to transport patients. Those were the only elevators he'd known for nearly two months. I told him we weren't using those, we had to go out in the hallway to use the other elevators. He said "ooohhhh" and walked straight to the double doors, made the turn to the right and went to the visitor elevators like he knew exactly where he was going. We didn't leave the hospital yet because we had a thank you card & goodie bag for the PICU staff as well. We got to see Brittni, who is unofficially Eli's main PICU nurse throughout the past two and a half years. After that, we made a quick trip to the gift shop for new Peyton Manning Children's Hospital tshirts for the four of us.
Then we walked out of the hospital. Exactly seven weeks earlier, we walked in for his preop testing. Now we finally got to leave. Before we walked out the doors, I had looked around to see if anyone could take a picture of us walking out. Yes, I knew it would be a strange request and am also aware that I would walk out only to come right back in to get the camera from whomever took our photo. It didn't matter though because the lobby was empty except for two people who were obviously on important calls. We weren't waiting any longer so we went to the van. Eli had not seen it for almost two months and that slick little twerp tried to climb into the front passenger seat instead of his car seat. The rotten little monkey knew exactly what he was doing.
We left the hospital and grabbed some lunch. We stopped at my sister's bank on our way out of Indy and surprised her. Ashley knew there was a good chance we were getting discharged, but because she was working she didn't know it really happened and I had been too busy to call anyone but Bryan. When she saw us she came running and hugged me & Eli. At that point she & I were both crying and I'm sure it was an odd scene for some of the customers, but we didn't care. We only stayed a few minutes because we had to get to Daddy & Bubba.
The trip home was pretty uneventful. Eli had taken a short nap on the way to my sister's bank, but stayed awake the rest of the trip. When we turned onto our road I saw balloons. They were tied to the stop sign, the mailbox, and were all over anything they could be tied to at the front of our house. There was also a sign welcoming us home. Later I was told to look in the street and I saw chunks of bread. That was my mother-in-law's joke related to the Facebook status I had posted when I found out Eli was being discharged ("HELP!!! I need directions from Indy to Washington because Eli is coming HOME!!!!!"). She left me a bread trail to find my way home.
It felt so good to hug Zachary & Bryan again. Eli was following Zachary around and doing whatever he was doing. We were home in time to unpack the van, pack a diaper bag and go to Zachary's ball game. We hadn't planned on taking Eli "out" that soon, but decided we needed that family time. We made sure to keep him away from most people. Eli had his own plans and had brought a ball, glove, and bat so he could play ball while Z's game was going on. He took breaks to watch Zachary at bat. Eli would either stand at the fence and yell "GO, BUBBA!" or he would stand with his bat and swing at the pitches being thrown to Zachary. While Z was in the dugout, Eli would go beside it to give him fives. Zachary kept showing Eli to the other kids and his coaches. He'd say "This is my baby brother Eli. He just got home from the hospital because he has a sick heart. I'm so glad he's here!" Going to that game was exactly the right decision.
Since we've been home: We've had a lot of adjusting. Eli's medication schedule was completely different from what we were used to preoperatively. He also has nighttime feedings throughout the night to supplement his diet. He's on a low fat diet because of the chyle present in the chest fluid. Eli is also on oxygen when he's asleep for naps or through the night. That's new to us as well. Because of the multiple procedures he had while hospitalized, we're still practicing "sternal precautions" with him. That means we can't pick him up under the arms for a couple more weeks and we aren't supposed to lift both arms above his head. He also can't have a bath yet or get in a swimming pool. It's been crazy and kind of stressful to find a whole new routine as he readjusts to home life. He & Zachary are obviously happy to be back together full time and he hasn't once asked for the play room at the hospital! Eli had to have a chest xray the Monday after we got home (almost a week). We have to keep track of his oxygen sats at random times (with and without oxygen) and let the cardiology group know how he's doing. I was really nervous for that chest xray because we had (purposely?) left unsaid what would happen if there was more fluid present. We didn't have much to worry about though because it showed the effusion is resolving! Only then did I start to relax a little and realize that we were probably home for a long time! I still haven't unpacked my suitcase yet. However, that's mostly due to the desire NOT to wear any of those clothes for at least seven weeks!
Eli has a check up in Indy next week. He'll be seen by his main cardiologist for follow up, another cardiologist who's in charge of the pacemaker, and either Sara or Dr. Abraham (or possibly both). He'll have an echo and possibly a chest xray & bloodwork. It will be another long day, but it will be fine. Later in the week he'll have a check up with Dr. Amy. We've seen her once for follow up care since we've been home, but plan for her to keep a close eye on him as well.
Eli's been doing great since we've been home. He plays, he makes messes, he pets Albert, and he saw all four of Zachary's baseball games that happened after we got home. He's happy. He's pink. He's silly and seems to have grown three inches since prior to surgery. His appetite is less than it was in the hospital, but honestly I think he's just too busy to eat. He will eat but is easily distracted (you know, like a two year old?). We're not worried because he's eating enough and is getting the special formula every night while he's asleep.
It's strange to put him to bed. It's not just getting him into the crib and sneaking out. We have to get him in, hook up the oxygen monitor, place his oxygen tubing on his face (if we didn't do it when he was awake), turn on the oxygen, and hook up his tube feeding. At night he has three tubes or wires running off his body for various monitoring or deliveries. Zachary is learning how to program Eli's feeding pump and mix the formula. He wants to, he asks us to show him.
Eli isn't sleeping well though the night. He cries out in the night and asks for the couch. Sometimes I can get him back to sleep in his room, other times, he comes to the couch. I don't know if it's because he's used to sleeping with an adult within arms' reach, if it's too quiet at home compared to the hospital, or if all the equipment is bothering him. The equipment is pretty quiet and we play a lullaby CD in his room. He's done this before. After we got home from his Glenn (second heart surgery), he went through several weeks of night terrors as he readjusted. It's tough on these kids.
I'll get some photos posted sometime. I know it does our prayer warriors good to see how great he's looking. Thank you for every single prayer that's been said on our behalf. The support we had was amazing. The boys loved getting the cards and packages in the mail. Our request was simply a card or note, and they got those and so much more. Thank you to everyone who sent anything. The boys have received coloring books, blankets, new toys, snacks, gift cards, stickers, etc and Bryan and I were even given care packs of snacks, a new Thirty-One bag, gas cards, and, most importantly, words of encouragement. THANK YOU! I would love to get individual thank you notes to you generous people, but in all honesty if it hasn't happened by now, it probably won't. Please don't take that as I was raised without manners (we had a barn I spent time in but I was not raised in it), it's just that I'm so busy with Eli's needs and very sleep deprived right now. This blog post has been a five day process, I don't even know if it flows coherently!
Specific prayer requests:
- thanks that we're home, together, and happy
- that Eli's cardiac check up and testing next week continues to show improvement
- for Eli to be able to rest well through the nights
- for momma and daddy to have enough sleep to function and get slightly more than the bare minimum done around here!
- for Zachary to feel content and just as important as Eli. It's hard to balance with Eli needing so many physical things and Zachary has had a few rough days since we've been home despite how happy he is that we're finally together.
Showing posts with label Hypoplastic Right Heart. Show all posts
Showing posts with label Hypoplastic Right Heart. Show all posts
Tuesday, June 18, 2013
Saturday, May 25, 2013
Days 37 & 38, Post Op Fontan (May 24 & 25)
Bryan and Zachary woke up at 3am on the 24th so they could be here in time to see Eli prior to surgery. Well, I should say that Zachary woke up when the alarm went off at 3 and told Bryan he was supposed to get in the shower so they could leave. The boy stayed awake the whole ride to Indy, through the surgery and getting to see Eli in the PICU, and even went to the Children's Museum with Mamaw Linda, Aunt Judy & Aunt Kendra for the afternoon. He fell asleep on the way back to the hospital but woke in the parking lot. He didn't go to bed until after 11:30 once he & I were settled at Aunt Ashley & Josh's house for the night. It took 40 minutes to get him up Saturday morning (after he slept for 11+ hours!). Poor kid! Right now, he & Bryan are in Louisville at a baseball game. Pics of their adventures to come in a later post!
Eli's surgery went just fine. Dr. Abraham said he took a lot of fluid off when he got in there and then he tacked down the right side of the diaphragm. The actual operation only took about 45-60 minutes. Eli was in the OR for about 45 minutes before the procedure started so they could get him to sleep, intubate, scrub the surgical area, etc. When he left the OR he was taken to the PICU for recovery. When we talked to Dr. Abraham postoperatively, he said that he hopes this will eliminate Eli's need for supplemental oxygen and another chest tube. Eli does have a JP drain in place to drain the fluid accumulating due to surgery. He'll have another chest x-ray Monday morning to check for fluid.
He spent the night in the PICU. At first he wasn't peeing on his own. They had to straight cath him once (straight cath = inserting a catheter into the bladder to drain the urine then withdrawing the catheter. It doesn't stay anchored in place to continually drain). He did start peeing on his own and has been doing well on that front. Our issue now is that he really needs to poop. His belly is very distended (his belly button is totally flat). He doesn't want to eat or drink anything, not that we blame him. He's actually vomited a small amount because his abdomen is so full. This shouldn't be due to pain meds because he's not getting anything new to him. Since surgery he's had 4 doses of morphine and a couple doses of Ibuprofen. He's been given Miralax and a suppository with orders to repeat those tonight if he doesn't have a bowel movement.
Around 5pm we were moved out of the PICU back to our dorm room on the third floor. That's what I'm calling it now. As we left the PICU for the fourth time this admission, I told them we wanted this to be goodBYE. We're so grateful they're available to us, but we're tired of being there! We were told only to come back to visit so I'm happy to say the feeling is mutual! Several nurses & docs stopped in Eli's room yesterday because they were shocked to find out he was still in the hospital.
Specific prayer requests:
- please pray for this diaphragm surgery to be the turnaround Eli needs to get over the final hurdles before he can be discharged.
- pray that he doesn't accumulate fluid on his lungs
- pray that he can wean completely off the oxygen
- pray for Bryan and Zachary to have a wonderful time at the baseball game and for a safe trip as they leave Louisville to come back to Indy tonight
Thank you all so much! Hope you're having a wonderful holiday weekend despite the chillier than usual temps. We'll make our own holiday weekend once the four (five if you count our doggie who's been boarding at my Mom's since mid-April...he may not want to come back home!) are back home together!!!!!!
Eli's surgery went just fine. Dr. Abraham said he took a lot of fluid off when he got in there and then he tacked down the right side of the diaphragm. The actual operation only took about 45-60 minutes. Eli was in the OR for about 45 minutes before the procedure started so they could get him to sleep, intubate, scrub the surgical area, etc. When he left the OR he was taken to the PICU for recovery. When we talked to Dr. Abraham postoperatively, he said that he hopes this will eliminate Eli's need for supplemental oxygen and another chest tube. Eli does have a JP drain in place to drain the fluid accumulating due to surgery. He'll have another chest x-ray Monday morning to check for fluid.
He spent the night in the PICU. At first he wasn't peeing on his own. They had to straight cath him once (straight cath = inserting a catheter into the bladder to drain the urine then withdrawing the catheter. It doesn't stay anchored in place to continually drain). He did start peeing on his own and has been doing well on that front. Our issue now is that he really needs to poop. His belly is very distended (his belly button is totally flat). He doesn't want to eat or drink anything, not that we blame him. He's actually vomited a small amount because his abdomen is so full. This shouldn't be due to pain meds because he's not getting anything new to him. Since surgery he's had 4 doses of morphine and a couple doses of Ibuprofen. He's been given Miralax and a suppository with orders to repeat those tonight if he doesn't have a bowel movement.
Around 5pm we were moved out of the PICU back to our dorm room on the third floor. That's what I'm calling it now. As we left the PICU for the fourth time this admission, I told them we wanted this to be goodBYE. We're so grateful they're available to us, but we're tired of being there! We were told only to come back to visit so I'm happy to say the feeling is mutual! Several nurses & docs stopped in Eli's room yesterday because they were shocked to find out he was still in the hospital.
Specific prayer requests:
- please pray for this diaphragm surgery to be the turnaround Eli needs to get over the final hurdles before he can be discharged.
- pray that he doesn't accumulate fluid on his lungs
- pray that he can wean completely off the oxygen
- pray for Bryan and Zachary to have a wonderful time at the baseball game and for a safe trip as they leave Louisville to come back to Indy tonight
Thank you all so much! Hope you're having a wonderful holiday weekend despite the chillier than usual temps. We'll make our own holiday weekend once the four (five if you count our doggie who's been boarding at my Mom's since mid-April...he may not want to come back home!) are back home together!!!!!!
Thursday, May 23, 2013
Day 36, Post Op Fontan (May 23)
Eli's chest x-ray this morning revealed a large pleural effusion. That means there's a pocket of fluid in his lung cavity. Dr. Abraham has decided to proceed with the "diaphragm plication" Friday morning. He will make an incision in Eli's right side and use a few stitches to tack down the diaphragm in hopes of allowing more room in the chest cavity. That will allow Eli's right lung to more fully expand. That should help keep his oxygen levels up & help him get rid of any future fluid accumulation. While he's in the OR, Dr. Abraham will drain the fluid we know is there and may opt to place a chest tube as well.
The surgery is scheduled to start between 7 and 7:30am. Eli will be taken from his room on the Peds Unit to the pre op area around 6:30. The procedure itself doesn't take very long, but he will likely go to the PICU afterwards for the remainder of the day and the night before returning to the general floor sometime Saturday. The nurses on our current floor are pretty certain they can hold our room for us and we won't have to take everything out for a one night PICU stay. That's a stress reliever for me!
I know we just asked this Wednesday, but if you could wear your shirts Friday to show your support for Eli we would appreciate it. Even more appreciated are the prayers and well wishes! Please pray for Eli's safety in the OR and during recovery. Pray that this will resolve the issue of fluid in his chest and make him stronger. As the day goes on, it's obvious that his breathing is getting more labored. He's fine, he's crazy and he's active so he is not in any distress, but that fluid is pushing on his lungs and needs to come out.
Thank you so much! Hopefully the next time we ask you to wear your shirts it will be discharge day! I will update as possible on Friday.
The surgery is scheduled to start between 7 and 7:30am. Eli will be taken from his room on the Peds Unit to the pre op area around 6:30. The procedure itself doesn't take very long, but he will likely go to the PICU afterwards for the remainder of the day and the night before returning to the general floor sometime Saturday. The nurses on our current floor are pretty certain they can hold our room for us and we won't have to take everything out for a one night PICU stay. That's a stress reliever for me!
I know we just asked this Wednesday, but if you could wear your shirts Friday to show your support for Eli we would appreciate it. Even more appreciated are the prayers and well wishes! Please pray for Eli's safety in the OR and during recovery. Pray that this will resolve the issue of fluid in his chest and make him stronger. As the day goes on, it's obvious that his breathing is getting more labored. He's fine, he's crazy and he's active so he is not in any distress, but that fluid is pushing on his lungs and needs to come out.
Thank you so much! Hopefully the next time we ask you to wear your shirts it will be discharge day! I will update as possible on Friday.
Friday, May 10, 2013
Days 22 & 23, Post Op Fontan (May 9 & 10)
Thursday was a pretty easy day. He didn't have a dressing change scheduled so he didn't have any feeding restrictions. He's been getting tube feedings through the night to supplement his oral diet. Protein is a huge factor in wound healing and that's something Eli doesn't eat a great deal of. He eats some, but not what they would like for "proper wound healing" so they've added protein to his nighttime feeds. Well, Thursday morning he had a burp that got a little.....oh, shall we just say "messy?" He only had about 45 minutes left on the feed so we just shut it off. Overall the doctors and dietary have been very pleased with his oral intake, but more vitamins and minerals won't hurt!
After most of his doctors saw him in the earlier part of the morning, we went for a long wagon ride and visited the play room (Eli's request). He won't get out of the wagon, but enjoys going in there to look at the variety of toys and possibly touch a few. Today was also the first day he's worn a real shirt since surgery. It's nearly impossible to find a button up shirt in his size that isn't dressy so we just went with this AWESOME Eli's MVPs shirt which is a few sizes too big.
We have to be careful because his right arm has the PICC line with two short "tubes" coming off it. Those dangle a little and we can't get them caught. We also have to observe sternal precautions with him for at least 6 weeks after surgery. One of those precautions is that we can't lift his arms over his head, especially at the same time. He can do it because if it hurts he'll stop, but we can't do it to him. That makes getting dressed a little tricky at times.
After his wagon ride and some lunch, Eli took a nap. I used the chance to run out and be outside the hospital. I had no plans and wound up at Staples and JC Penney. I bought a few shirts for Eli with characters on them that were on clearance. When I got back he was still asleep. The boy took a three hour nap!
Thursday night we had some visitors. Longtime friends of mine stopped by as well as Aunt Ashley Veale and her boyfriend. The five of us walked the halls and pulled Eli in his wagon. I think our visitors enjoyed their tour ;) After they left we started getting ready for bed. I was worried that his three hour nap would make it hard for him to fall asleep. He was out before 10pm. However, he woke up when he had to poop. Then he was up until 12:15am. He was playing, kicking his legs, laughing, teasing me, and just being an adorable pest. I tried explaining that he had to be quiet because there are sick children here who are trying to sleep. He understood and complied exactly like you'd expect from a two year old. Eventually he did fall asleep and slept pretty well through the night. He woke once when the nurse had to check his vitals, pull off his chest tube (drain it) and start his antibiotic, but he went back to sleep once she was done.
His feeding was stopped at 4am because his dressing change was scheduled for 9am this morning. Today started off kind of rocky. Earlier I used the phrase "wonky" and I think that's pretty accurate for the events of the morning. As he was waking up and doing his stretching thing, I was in the bathroom getting washed up. As I walked from the bathroom to his bed, my eyes, out of habit, drifted to the monitor. It showed a heart rate of 90, which is what he is paced at. As I put some clothes away his monitor started beeping. It showed a rate of 160! It hadn't been but a few seconds since I saw the 90, so I really didn't worry because I thought it was "misreading" and would go back down. It didn't. His heart rate was 145-160. Eli was just laying there watching tv. He was a little annoyed by the beeping monitor, but otherwise not showing any signs of distress. I was getting worried because the last time his heart rate rose he got up to over 200 beats per minute and almost had to be cardioverted/shocked to get out of the rhythm. He wasn't that high, but we didn't know why he was doing 160. When we looked at the monitor, it looked like he had two pacer spikes for every complex (heart beat). That means he would have been pacing atrially and ventricularly even though his pacer is set for atrial pacing.
The aide came in and got blood pressure, O2 and temperature. As she was doing that, three nurses came to our room. They were soon followed by our nurse (who we hadn't seen yet simply because she was tied up in another room...that's why nurses work together! It's a beautiful thing!), the hospitalist and the nurse practitioner for the floor. Keep in mind, this rate had been going on for all of maaayyybeee 3 minutes by the time they were gathering in our room. They take care of him here! One of them paged Dr. Steinberg who said he'd be right over as soon as he went to the electrophysiology lab to get one of the computers that controls the pacemaker. He was here within 10 minutes. While we waited for him, some of the nurses cleared out because things were under control and Eli was getting very agitated with all the people. Our nurse stayed in the room while the hospitalist and NP stayed in the doorway. He was actually fine and calm through the whole thing with the exception of too many people in his room looking at him.
Literally as Dr. Steinberg walked through the double doors to our unit, Eli's rate immediately went to 90. The unit staff teased Dr. Steinberg about it and as he set up his computer he made a silly comment in response, but there was no smile on his face. It wasn't as serious as the Sunday night when Eli was in SVTs and atrial flutter, but he wasn't playing around either. He asked a few questions and began looking through the telemetry strips that had been handed to him on the way into our room. He started working on the computer and changed a few settings. After several minutes of this and monitoring Eli, he basically said he didn't think it would happen again. He said what happened was due to the pacemaker settings. It's very confusing, but in a nutshell, the atrial wires picked up Eli's ventricular rate. A setting on the pacer drove Eli's atrial rate higher which kicked on the ventricular pacing, which is why we saw both pacer spikes on the monitor. The setting had a cap on it of 160 which explains why it didn't go any higher. He doesn't have an explanation as to why it quit sensing when it did and returned to 90 (other than sensing his presence on the unit, him having the magic touch, and other BS because he was now smiling and being a joker again...which was a relief to me!). I may not be explaining it well here, but what he said made sense at the time and he isn't worried about it. He simply said there are things to tweak with Eli's pacer while he's still here and we'll still be doing some minor changes over the next few months. We have to remember that although Eli was junctional for a year and a half prior to getting the pacemaker, his rhythm could be changing. The amount of surgery he had could have changed his baseline rhythm to an extent, and it could still be changing since he is only three weeks out. The pacer will be adjusted accordingly.
The point is that Eli is fine. The bad news from all that was we missed our 9am wound dressing time and the team had to move on to other patients. Dr. Steinberg assured us Eli was okay to continue with the sedation for his wound vac dressing change and our nurse worked on getting that set up again. Eli was asking for a bottle but we couldn't give him anything. We didn't know if they could come right over and do it, if they could do it in the afternoon, or even yet today! We had to keep him NPO until we knew more. In an effort to distract him, we went for a wagon ride. He was okay with it for a while but then he kept pointing out the doors toward the family room. The family room has a refrigerator. The refrigerator has our half gallon of chocolate milk. No one has ever said Eli was stupid.
As I pulled him through the halls he was yelling "choc milk!" As we passed the nurses station we were told they were trying to get a time from the wound care team and would let us know as soon as possible. I didn't have to tell them anything, they wanted it changed or to feed him as much as I did! After a couple more laps I happened to see the lady from the wound care team headed toward our room. We got back there and found out they were preparing to do it as soon as everyone necessary could be gathered. They started a little before 11. I was floored at the difference since the dressing change on Wednesday. It's definitely almost healed. The PT doing the change said she agreed with what Dr. Abraham had hoped would happen: That this may be the last time placing the vac. The next time they come in it will likely be just to take it off and determine the best way to finish closing it (stitches or natural).
Originally the next change was scheduled for Monday, but in an attempt to coordinate chest tube removal while sedated for the wound vac change, it's being moved to Tuesday. At this point we don't know that his chest tube can come out, but he's definitely moving closer to that and by delaying until Tuesday gives him one more day.
After the wound vac was done I got his toenails trimmed. Nothing like using a little sedation to my advantage! I did his fingernails Wednesday! He was very very funny today as he was coming out of it. We're very fortunate that he's done so well with all the sedation he's had to go through. Today he was laughing easily and making funny noises. I got some of it on video but I can't figure out where to find it on our computer and therefore can't post it here. Just know that he was doing some silly and adorable things.
He ate a good lunch. Most of it was mine as he found out he liked my taco salad. As long as he's eating, right? Then he fell asleep for a long nap. When he woke up the good mood was gone and he screamed at me for an hour. He couldn't decide on a movie, he was uncomfortable in the bed, he didn't want me to move him in the bed, he was hungry, he didn't want a bottle, he didn't want to sit up to eat anything (would have eaten laying down if I had let him), etc, etc. As soon as he was unhooked from his antibiotic I got his little bitty butt in the wagon and we went for a long ride. Several stops in the playroom, countless trips around the circle, a long stop to look out the big window at the front of the hospital and parking garage, and a chocolate milk later he was happier. We came back to the room where he screamed at me for getting him out of the wagon and into bed. Then he got happier and ate some of his cold supper at 8:30. Now he's lying in his crib, watching Rio and sucking a bottle. Hopefully he'll stay awake a little longer because the nurse needs to come pull off his chest tube again and he's due for a couple meds. Then he can sleep uninterrupted by nursing until almost 5am.
It's been a busy couple days, but he is showing improvement. His "nicer" attitude is breaking through more and more each day. I really think he's getting tired of me. That doesn't bother me because this is a long time to spend with one person. Hopefully he'll get to see Daddy & Zachary this weekend to help lift his spirits more. Speaking of those two guys, they are going to ride The Dinosaur Train tomorrow at French Lick. We heard about this and bought tickets back in March. We only bought three because Eli's surgery date wasn't set at the time and even if surgery were over, he couldn't be out in that type of crowd. Zachary, Bryan and Bryan's mom will take him tomorrow. We didn't tell him about it until last night. It was so nice to hear the excitement in his voice.
Zachary's preschool program and graduation are Monday night. I can't believe he's finishing preschool and is signed up for kindergarten! My baby is growing up so quickly. I'm incredibly proud of the big boy he's turning into, but I just want to keep him a baby! Especially these days, since I only get to see him for a few hours once a week :( Each time I see him I think he's physically grown and he has new vocabulary. Last weekend he was using the word "brilliant" quite a bit. Not sure where he picked it up or what prompted it, but it was cute. I had a very sad moment yesterday when I realized that I will never again drop him off or pick him up at preschool. His last day is Wednesday and I'll still be here with Eli. It's probably for the best because I'd be a crying mess (more so than his very first day, which I am proud to say I handled very well!).
Well I've worked on this post off and on for the past 7 hours! It's all done during Eli's "happier" moments that don't involve a wagon.
Specific prayer requests:
- for a good night's sleep for Eli & myself. Hospital life isn't made for quality sleep. They're doing their best to cluster his duties, but there's only so much they can do.
- for Eli's pacemaker to have all the "kinks" worked out before discharge
- for Eli's mood to continue to improve and for him to let himself have some fun!
- for Eli's chest tube drainage to decrease and stay down so that his chest tube can be removed at the same time as his next dressing change.
- for continued healing of his chest wound
- for our next "Specific Prayer Requests" to include a plea for starting the process of discharge planning (hey, a momma can dream, right?)
Thank you all!
After most of his doctors saw him in the earlier part of the morning, we went for a long wagon ride and visited the play room (Eli's request). He won't get out of the wagon, but enjoys going in there to look at the variety of toys and possibly touch a few. Today was also the first day he's worn a real shirt since surgery. It's nearly impossible to find a button up shirt in his size that isn't dressy so we just went with this AWESOME Eli's MVPs shirt which is a few sizes too big.
 |
| Eli sporting his Eli's MVPs shirt in the playroom |
After his wagon ride and some lunch, Eli took a nap. I used the chance to run out and be outside the hospital. I had no plans and wound up at Staples and JC Penney. I bought a few shirts for Eli with characters on them that were on clearance. When I got back he was still asleep. The boy took a three hour nap!
Thursday night we had some visitors. Longtime friends of mine stopped by as well as Aunt Ashley Veale and her boyfriend. The five of us walked the halls and pulled Eli in his wagon. I think our visitors enjoyed their tour ;) After they left we started getting ready for bed. I was worried that his three hour nap would make it hard for him to fall asleep. He was out before 10pm. However, he woke up when he had to poop. Then he was up until 12:15am. He was playing, kicking his legs, laughing, teasing me, and just being an adorable pest. I tried explaining that he had to be quiet because there are sick children here who are trying to sleep. He understood and complied exactly like you'd expect from a two year old. Eventually he did fall asleep and slept pretty well through the night. He woke once when the nurse had to check his vitals, pull off his chest tube (drain it) and start his antibiotic, but he went back to sleep once she was done.
His feeding was stopped at 4am because his dressing change was scheduled for 9am this morning. Today started off kind of rocky. Earlier I used the phrase "wonky" and I think that's pretty accurate for the events of the morning. As he was waking up and doing his stretching thing, I was in the bathroom getting washed up. As I walked from the bathroom to his bed, my eyes, out of habit, drifted to the monitor. It showed a heart rate of 90, which is what he is paced at. As I put some clothes away his monitor started beeping. It showed a rate of 160! It hadn't been but a few seconds since I saw the 90, so I really didn't worry because I thought it was "misreading" and would go back down. It didn't. His heart rate was 145-160. Eli was just laying there watching tv. He was a little annoyed by the beeping monitor, but otherwise not showing any signs of distress. I was getting worried because the last time his heart rate rose he got up to over 200 beats per minute and almost had to be cardioverted/shocked to get out of the rhythm. He wasn't that high, but we didn't know why he was doing 160. When we looked at the monitor, it looked like he had two pacer spikes for every complex (heart beat). That means he would have been pacing atrially and ventricularly even though his pacer is set for atrial pacing.
The aide came in and got blood pressure, O2 and temperature. As she was doing that, three nurses came to our room. They were soon followed by our nurse (who we hadn't seen yet simply because she was tied up in another room...that's why nurses work together! It's a beautiful thing!), the hospitalist and the nurse practitioner for the floor. Keep in mind, this rate had been going on for all of maaayyybeee 3 minutes by the time they were gathering in our room. They take care of him here! One of them paged Dr. Steinberg who said he'd be right over as soon as he went to the electrophysiology lab to get one of the computers that controls the pacemaker. He was here within 10 minutes. While we waited for him, some of the nurses cleared out because things were under control and Eli was getting very agitated with all the people. Our nurse stayed in the room while the hospitalist and NP stayed in the doorway. He was actually fine and calm through the whole thing with the exception of too many people in his room looking at him.
Literally as Dr. Steinberg walked through the double doors to our unit, Eli's rate immediately went to 90. The unit staff teased Dr. Steinberg about it and as he set up his computer he made a silly comment in response, but there was no smile on his face. It wasn't as serious as the Sunday night when Eli was in SVTs and atrial flutter, but he wasn't playing around either. He asked a few questions and began looking through the telemetry strips that had been handed to him on the way into our room. He started working on the computer and changed a few settings. After several minutes of this and monitoring Eli, he basically said he didn't think it would happen again. He said what happened was due to the pacemaker settings. It's very confusing, but in a nutshell, the atrial wires picked up Eli's ventricular rate. A setting on the pacer drove Eli's atrial rate higher which kicked on the ventricular pacing, which is why we saw both pacer spikes on the monitor. The setting had a cap on it of 160 which explains why it didn't go any higher. He doesn't have an explanation as to why it quit sensing when it did and returned to 90 (other than sensing his presence on the unit, him having the magic touch, and other BS because he was now smiling and being a joker again...which was a relief to me!). I may not be explaining it well here, but what he said made sense at the time and he isn't worried about it. He simply said there are things to tweak with Eli's pacer while he's still here and we'll still be doing some minor changes over the next few months. We have to remember that although Eli was junctional for a year and a half prior to getting the pacemaker, his rhythm could be changing. The amount of surgery he had could have changed his baseline rhythm to an extent, and it could still be changing since he is only three weeks out. The pacer will be adjusted accordingly.
The point is that Eli is fine. The bad news from all that was we missed our 9am wound dressing time and the team had to move on to other patients. Dr. Steinberg assured us Eli was okay to continue with the sedation for his wound vac dressing change and our nurse worked on getting that set up again. Eli was asking for a bottle but we couldn't give him anything. We didn't know if they could come right over and do it, if they could do it in the afternoon, or even yet today! We had to keep him NPO until we knew more. In an effort to distract him, we went for a wagon ride. He was okay with it for a while but then he kept pointing out the doors toward the family room. The family room has a refrigerator. The refrigerator has our half gallon of chocolate milk. No one has ever said Eli was stupid.
As I pulled him through the halls he was yelling "choc milk!" As we passed the nurses station we were told they were trying to get a time from the wound care team and would let us know as soon as possible. I didn't have to tell them anything, they wanted it changed or to feed him as much as I did! After a couple more laps I happened to see the lady from the wound care team headed toward our room. We got back there and found out they were preparing to do it as soon as everyone necessary could be gathered. They started a little before 11. I was floored at the difference since the dressing change on Wednesday. It's definitely almost healed. The PT doing the change said she agreed with what Dr. Abraham had hoped would happen: That this may be the last time placing the vac. The next time they come in it will likely be just to take it off and determine the best way to finish closing it (stitches or natural).
Originally the next change was scheduled for Monday, but in an attempt to coordinate chest tube removal while sedated for the wound vac change, it's being moved to Tuesday. At this point we don't know that his chest tube can come out, but he's definitely moving closer to that and by delaying until Tuesday gives him one more day.
After the wound vac was done I got his toenails trimmed. Nothing like using a little sedation to my advantage! I did his fingernails Wednesday! He was very very funny today as he was coming out of it. We're very fortunate that he's done so well with all the sedation he's had to go through. Today he was laughing easily and making funny noises. I got some of it on video but I can't figure out where to find it on our computer and therefore can't post it here. Just know that he was doing some silly and adorable things.
He ate a good lunch. Most of it was mine as he found out he liked my taco salad. As long as he's eating, right? Then he fell asleep for a long nap. When he woke up the good mood was gone and he screamed at me for an hour. He couldn't decide on a movie, he was uncomfortable in the bed, he didn't want me to move him in the bed, he was hungry, he didn't want a bottle, he didn't want to sit up to eat anything (would have eaten laying down if I had let him), etc, etc. As soon as he was unhooked from his antibiotic I got his little bitty butt in the wagon and we went for a long ride. Several stops in the playroom, countless trips around the circle, a long stop to look out the big window at the front of the hospital and parking garage, and a chocolate milk later he was happier. We came back to the room where he screamed at me for getting him out of the wagon and into bed. Then he got happier and ate some of his cold supper at 8:30. Now he's lying in his crib, watching Rio and sucking a bottle. Hopefully he'll stay awake a little longer because the nurse needs to come pull off his chest tube again and he's due for a couple meds. Then he can sleep uninterrupted by nursing until almost 5am.
It's been a busy couple days, but he is showing improvement. His "nicer" attitude is breaking through more and more each day. I really think he's getting tired of me. That doesn't bother me because this is a long time to spend with one person. Hopefully he'll get to see Daddy & Zachary this weekend to help lift his spirits more. Speaking of those two guys, they are going to ride The Dinosaur Train tomorrow at French Lick. We heard about this and bought tickets back in March. We only bought three because Eli's surgery date wasn't set at the time and even if surgery were over, he couldn't be out in that type of crowd. Zachary, Bryan and Bryan's mom will take him tomorrow. We didn't tell him about it until last night. It was so nice to hear the excitement in his voice.
Zachary's preschool program and graduation are Monday night. I can't believe he's finishing preschool and is signed up for kindergarten! My baby is growing up so quickly. I'm incredibly proud of the big boy he's turning into, but I just want to keep him a baby! Especially these days, since I only get to see him for a few hours once a week :( Each time I see him I think he's physically grown and he has new vocabulary. Last weekend he was using the word "brilliant" quite a bit. Not sure where he picked it up or what prompted it, but it was cute. I had a very sad moment yesterday when I realized that I will never again drop him off or pick him up at preschool. His last day is Wednesday and I'll still be here with Eli. It's probably for the best because I'd be a crying mess (more so than his very first day, which I am proud to say I handled very well!).
Well I've worked on this post off and on for the past 7 hours! It's all done during Eli's "happier" moments that don't involve a wagon.
Specific prayer requests:
- for a good night's sleep for Eli & myself. Hospital life isn't made for quality sleep. They're doing their best to cluster his duties, but there's only so much they can do.
- for Eli's pacemaker to have all the "kinks" worked out before discharge
- for Eli's mood to continue to improve and for him to let himself have some fun!
- for Eli's chest tube drainage to decrease and stay down so that his chest tube can be removed at the same time as his next dressing change.
- for continued healing of his chest wound
- for our next "Specific Prayer Requests" to include a plea for starting the process of discharge planning (hey, a momma can dream, right?)
Thank you all!
Wednesday, May 8, 2013
Day 21, Post Op Fontan (May 8)
This moment three weeks ago we were sitting in a waiting room as Eli was in surgery. That day he endured two major reconstructions to his heart, placement of a pacemaker, and several units of blood all totaling over eight hours in the OR. After talking to Dr. Abraham in the late afternoon he asked if we had any questions. I blurted out "Did you get lunch?" He smiled and calmly (because I've never heard him anything but calm) said, "No, we just plow through and get the job done."
Eli's wound vac dressing change went fine today. His sedation was even better than it was Monday. Monday they put a dry washcloth over his eyes because he didn't like the bright lights they needed. Today we did that as soon as he was starting to "phase out" and aside from the occasional grunt or hand motion he was very quiet. The wound looks great. I am astounded at how well it is healing. The wound vac is a miracle invention. The other day I told Dr. Belcher my only wound vac experience was on the backside of people who were eighty and older. He just smiled and said, "Now you see how they're supposed to work!" Dr. Abraham wanted to be present for today's dressing change so he could assess the wound. He hadn't seen it since last Friday. Eli's next change is scheduled for the day after tomorrow, which will be Friday. Then they'll do it again on Monday. Today, Dr. Abraham said he wouldn't be surprised if they don't replace it when they take it off Monday. At that point he'll have to make a decision about how to close the rest of it (let it granulate/"fill in" with new skin or use stitches). Just the fact that Eli's healing so well and we can even think about stopping using the wound vac is mind blowing to me. I don't even care if they need to put the wound vac on for a few more days after the change on Monday. To be that close is exciting!
Eli's chest tube is still draining a fair amount. The past three days he's averaged 100-120cc/day (between 3 & 4 ounces). That's not a lot but too much to handle on his own without a chest tube. Hopefully he starts putting out less and less and we can talk about setting a day to remove that. Things are moving along slowly, but he's getting better. We just keep saying that we knew his surgery was going to be huge and it ended up being an even bigger surgery by the necessary mitral valve repair. Chest tubes and infection are not to be taken lightly, but we keep saying at least he's beating and breathing. We'll deal with the rest as it comes!
Eli is sleeping now. About 15 minutes before his nap the nurse turned off his oxygen. That hasn't been done in days and we need to assess how he does on room air. He quickly went from 95% to around 90%. Basically he's ranging from 89-91% with the occasional 86 (that's the lowest I've seen). Once he got up to 92%!!!! I took a photo of that and sent it to Bryan! Ideally, they want him to be in the low nineties without supplemental oxygen, but if he stays in the upper 80s Sara's phrase was "we'll deal with it." As the fluid from his chest tube decreases his oxygen levels may stay a little higher. Time will tell and we've got plenty of that in here!
Today is National Nurse's Day. I want to thank all the wonderful nurses I have the privilege of working with (when I get there!). I also want to thank all the incredible, caring, intelligent, quality nurses who've taken care of Eli not only throughout this hospitalization, but the last two and a half years. I couldn't begin to name them all and I'm afraid I'll leave someone out. Let's try it this way:
- the nurses at Cullen Medical who take care of all four of us and many details of Eli's care so we don't have to mess with it
- the nurses at Peyton Manning Children's Hospital. There are too many to name so I'll attempt by department (and I'm afraid I'll leave one of them out!): Sara Bodenmiller (cardiac NP) and the nurses in the cardiac office, the OR nurses (especially Susan who was Eli's surgical nurse for his Fontan and the abscess drainage), the preop nurses, PICU nurses and NPs, the nurses in the vascular lab where Eli's PICC line was put in, the third floor nurses and NPs, case management nurses, the nurse liaisons who keep us informed during Eli's procedures, the recovery room nurses, and all the behind-the-scenes nurses who do things I don't even know about!
- Tracey, nurse at Dr. Kumbar's office (Evansville cardiologist) and the others who we don't see as often but always help out when we need it
- the nurses at Williams Brothers HealthCare Pharmacy who help coordinate Eli's feeding tube supplies and will be coordinating his home IV therapy (whenever that may be!)
So, if you know a nurse, give some credit to him/her. I think I saw that it's also Teacher's Week as well as Nurse's Week. Isn't it funny how teachers and nurses are celebrated around the same time as Mother's Day? Parenting, teaching and nursing have to be the most rewarding careers that can emotionally drain you five minutes into your day! Thanks to all teachers (including my momma!) for all your hard work as well :)
In yesterday's post I had alluded to the fact that there may be a shortage of blood (just me speculating since it took so long to get Eli's unit for transfusion). I don't have any more info regarding blood supplies, but did find out that there is a blood drive in Washington this week for anyone who's interested. It's at the Birdcage (Washington Catholic gym). The Red Cross will be there collecting units on Thursday, May 9 from 12:30pm - 5:30pm. If you want to help out, this would be a good chance.
Another organization who coordinates blood drives around the state is Indiana Blood Center. You can get to their website here and see if they have any blood drives in your area. Also, you can always contact your local Red Cross to see what their schedule is. Thanks for all the responses about blood donation from my last post! Take care and thank you for the support :)
Eli's wound vac dressing change went fine today. His sedation was even better than it was Monday. Monday they put a dry washcloth over his eyes because he didn't like the bright lights they needed. Today we did that as soon as he was starting to "phase out" and aside from the occasional grunt or hand motion he was very quiet. The wound looks great. I am astounded at how well it is healing. The wound vac is a miracle invention. The other day I told Dr. Belcher my only wound vac experience was on the backside of people who were eighty and older. He just smiled and said, "Now you see how they're supposed to work!" Dr. Abraham wanted to be present for today's dressing change so he could assess the wound. He hadn't seen it since last Friday. Eli's next change is scheduled for the day after tomorrow, which will be Friday. Then they'll do it again on Monday. Today, Dr. Abraham said he wouldn't be surprised if they don't replace it when they take it off Monday. At that point he'll have to make a decision about how to close the rest of it (let it granulate/"fill in" with new skin or use stitches). Just the fact that Eli's healing so well and we can even think about stopping using the wound vac is mind blowing to me. I don't even care if they need to put the wound vac on for a few more days after the change on Monday. To be that close is exciting!
Eli's chest tube is still draining a fair amount. The past three days he's averaged 100-120cc/day (between 3 & 4 ounces). That's not a lot but too much to handle on his own without a chest tube. Hopefully he starts putting out less and less and we can talk about setting a day to remove that. Things are moving along slowly, but he's getting better. We just keep saying that we knew his surgery was going to be huge and it ended up being an even bigger surgery by the necessary mitral valve repair. Chest tubes and infection are not to be taken lightly, but we keep saying at least he's beating and breathing. We'll deal with the rest as it comes!
Eli is sleeping now. About 15 minutes before his nap the nurse turned off his oxygen. That hasn't been done in days and we need to assess how he does on room air. He quickly went from 95% to around 90%. Basically he's ranging from 89-91% with the occasional 86 (that's the lowest I've seen). Once he got up to 92%!!!! I took a photo of that and sent it to Bryan! Ideally, they want him to be in the low nineties without supplemental oxygen, but if he stays in the upper 80s Sara's phrase was "we'll deal with it." As the fluid from his chest tube decreases his oxygen levels may stay a little higher. Time will tell and we've got plenty of that in here!
Today is National Nurse's Day. I want to thank all the wonderful nurses I have the privilege of working with (when I get there!). I also want to thank all the incredible, caring, intelligent, quality nurses who've taken care of Eli not only throughout this hospitalization, but the last two and a half years. I couldn't begin to name them all and I'm afraid I'll leave someone out. Let's try it this way:
- the nurses at Cullen Medical who take care of all four of us and many details of Eli's care so we don't have to mess with it
- the nurses at Peyton Manning Children's Hospital. There are too many to name so I'll attempt by department (and I'm afraid I'll leave one of them out!): Sara Bodenmiller (cardiac NP) and the nurses in the cardiac office, the OR nurses (especially Susan who was Eli's surgical nurse for his Fontan and the abscess drainage), the preop nurses, PICU nurses and NPs, the nurses in the vascular lab where Eli's PICC line was put in, the third floor nurses and NPs, case management nurses, the nurse liaisons who keep us informed during Eli's procedures, the recovery room nurses, and all the behind-the-scenes nurses who do things I don't even know about!
- Tracey, nurse at Dr. Kumbar's office (Evansville cardiologist) and the others who we don't see as often but always help out when we need it
- the nurses at Williams Brothers HealthCare Pharmacy who help coordinate Eli's feeding tube supplies and will be coordinating his home IV therapy (whenever that may be!)
So, if you know a nurse, give some credit to him/her. I think I saw that it's also Teacher's Week as well as Nurse's Week. Isn't it funny how teachers and nurses are celebrated around the same time as Mother's Day? Parenting, teaching and nursing have to be the most rewarding careers that can emotionally drain you five minutes into your day! Thanks to all teachers (including my momma!) for all your hard work as well :)
In yesterday's post I had alluded to the fact that there may be a shortage of blood (just me speculating since it took so long to get Eli's unit for transfusion). I don't have any more info regarding blood supplies, but did find out that there is a blood drive in Washington this week for anyone who's interested. It's at the Birdcage (Washington Catholic gym). The Red Cross will be there collecting units on Thursday, May 9 from 12:30pm - 5:30pm. If you want to help out, this would be a good chance.
Another organization who coordinates blood drives around the state is Indiana Blood Center. You can get to their website here and see if they have any blood drives in your area. Also, you can always contact your local Red Cross to see what their schedule is. Thanks for all the responses about blood donation from my last post! Take care and thank you for the support :)
Tuesday, May 7, 2013
Days 17, 18, 19, & 20 Post Op Fontan (May 4, 5, 6, & 7)
Saturday, May 4, 2013: Eli's wound vac dressing was changed about 1:30pm. This was the first time I'd seen it since surgery day on Thursday. I was absolutely shocked to see how well it was already starting to heal. On Thursday I could see sternal wires and on Saturday they were already covered up! The tissue was red and healthy looking. The hospitalist, RN, and wound care team in the room with us were pleased with his progress. Because he was healing so well they decided to change it again on Sunday. Originally they thought they'd change the dressing every other day, but he was healing so quickly they felt it was necessary to do it every day.
Bryan and Zachary got to the hospital as the dressing change was starting. When it was done I called them and they came in the room to help with Eli's bath. Eli was still pretty loopy because of the sedation (it doesn't make him sleepy, just relaxed and he won't remember what happened). It was the perfect time to bathe the smelly little critter. He liked it and also got a bed change. As he fully woke up, he must have liked having the four of us together in his room. I thought Zachary and I would leave to do something fun together, but he wanted to stay and watch movies with Eli.
We hung out until the evening when Eli was moved from the PICU to the third floor. Zachary was fascinated with Eli's rolling crib and the fact it fit on an elevator.
After we helped get Daddy & Eli settled in, Z & I headed south to Greenwood. He decided he wanted Denny's for supper. In the parking lot he said he just loved their pizza and goldfish crackers. That's exactly what he ordered and ate. Isn't the pizza and goldfish crackers why we all go to Denny's?
Once we got to Ashley's house we did a few chores (I had laundry to do as well as some bottles & pacifiers to wash) and got ready for bed. He had decided that we were going to the Children's Museum on Sunday, even though he'd been there two weeks ago with my sister. It was wonderful to snuggle him to sleep. He fell asleep on my shoulder and holding my hand. I was physically and emotionally exhausted but tried to stay awake as long as I could so I could just feel his hand in mine.
Sunday, May 5, 2013: We packed up & headed to the museum in the late morning. When we got there, we bought a membership. By the time the four of us go two and a half times, it's paid for. Have you met my son with his dino fascination? We'll be there many more times in the course of a year!
The dinos were our first stop. After that we saw the trains, the blown glass exhibit and play area, Hot Wheels display, Egyptian display, and the gecko area.
Bryan was on his way by then and we left the geckos to meet him at the entrance with our new membership card. Zachary had to take Bryan back to the dinosaur area, the blown glass area, then to the geckos. Then he wanted to see the science area and he played there for a long time. The museum was closing soon and to get him out we told him if he wanted the gift shop we had to leave then so it wouldn't close before we got there. He picked out a pair of dinosaur chopsticks for Eli to complement the ones he chose for himself when he visited with my sister. For himself, he chose a small stuffed dino that's similar to the one he got Eli last time.
We came back to the hospital and after a brief visit, Bryan and Zachary left with Bryan's parents who had sat with Eli so Bryan could join us at the museum. By the four of them leaving together, I got to keep the van. Bryan was returning to work on Monday so now I have my own transportation up here if I need it. Eli & I spent the evening trying to unpack into our new room (our fourth this admission!) and settle in to just be the two of us for a long time.
Monday, May 6, 2013: Eli was NPO (nothing by mouth) at 6am. His wound change was scheduled for noonish but it was able to happen a little earlier. Again, he did well with the sedation, but since he's been sedated so often in such a short period of time, he's starting to build a tolerance to it. It took a little more medicine today to achieve the same effect. The whole process only takes about 15 minutes and he does really well. The meds they use are Ketamine and Versed. I think they may have used Ativan as well on Sunday (not sure since I wasn't here).
The wound is looking even better than I thought it would after seeing it Saturday. His next scheduled change is for Wednesday. They're hoping to let him last until Saturday for the next change, but we'll know more after Wednesday. Once Eli was awake enough to eat and drink, he had a good lunch! He doesn't eat a lot at once, but he eats several bites of things throughout the day. Today, he ate a pretty fair amount in a short time and then took a much needed two plus hour nap. He did well with supper too and is asleep as I type this.
The plan for Tuesday is to resume some Physical Therapy. He hasn't had any since last Wednesday, the day his chest tube was accidentally pulled out. Oh, yes, his chest tube drainage has been steadily decreasing. Nothing yet has been said about when we may be rid of it.
As of now, we don't have any guess how long we'll be here. The wound vac is working great at healing him, but you have to remember he has a three inch incision about an inch and a half deep into his chest. He's doing great, but it still takes time. No one has ventured any guesses, but I think it's safe to assume we'll be here for at least two more weeks.
Zachary and Bryan went fishing tonight at my mom's pond. They had quite a catch and Zachary is looking forward to eating some fish! I know he misses me & Eli, but it's already improved his mood to have Daddy home. Hopefully spending some time with me this weekend helped him as much as it helped me!
Tuesday, May 7, 2013: Eli got a blood transfusion last night. His hematocrit was lower than they'd prefer for a single ventricle baby recovering from two surgeries in three weeks and trying to heal a large wound in his chest. Blood was ordered yesterday morning. It was finally available by 3am. Eli's a type O, so if it took that long to match him I can only guess that the blood supply is low. {Insert plea for blood donation from anyone who is able to donate. FYI: Eli has received 8 units of blood this admission alone.} Because of his nighttime medication schedule, they've changed when his vitals are taken so they can coincide with medication times throughout the night. That gives him more opportunity for sleep. That didn't happen last night though because of the blood administration. Because of that we slept in this morning (as much as you can in the hospital!).
In addition to his regular visits from cardiology and infectious disease, we met with a social worker who introduced me to some programs that may be available to us for Eli. Some are financial and some are support systems. She suggested that we apply for some of the financial assistance simply to get our foot in the door as Eli has an ongoing medical condition and will need care for the rest of his life. The other meeting we had was with dietary. They're trying to figure out the best tube feeding for him based on his oral intake. Protein is crucial to wound healing and that's usually not one of Eli's strong points in a meal. They're impressed with the variety and amount he does have, but agree we need to be a little more aggressive on his tube feedings. When we feed at home and so far here in the hospital we've used a formula that is 30cal/ounce (a 1 calorie per 1 cc of fluid ratio). They're changing it to 1.5 calories per cc formula and attempting to increase the rate of his infusion so he gets more in the same amount of time. Depending on how he tolerates that for the next few nights they may add some protein powder to the formula to increase his overall calories and protein. Ideally he should have about 1000 calories/day. If he tolerates the new formula at a faster rate and the protein powder, that means he'll receive 540 calories via tube feed and his full requirement of protein. We'll see how the next few days go.
His next dressing change is Wednesday. We're aiming for it to happen between 8 and 9am so we don't have to keep him NPO all morning. Based on what they see with the wound change tomorrow, they'll decide when his next one will be.
I'll try to be better at updating daily or every other day. This weekend was fun and I wasn't on the computer much, but overall it's easier for me to keep track if I do it more often! Thanks for your prayers and support!
Bryan and Zachary got to the hospital as the dressing change was starting. When it was done I called them and they came in the room to help with Eli's bath. Eli was still pretty loopy because of the sedation (it doesn't make him sleepy, just relaxed and he won't remember what happened). It was the perfect time to bathe the smelly little critter. He liked it and also got a bed change. As he fully woke up, he must have liked having the four of us together in his room. I thought Zachary and I would leave to do something fun together, but he wanted to stay and watch movies with Eli.
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| Eli trying to fit his hand into my bracelet (it's his hospital bracelet that Bryan & I each wear while he's an inpatient) |
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| Pablo (character from The Backyardigans) that Eli is attached to. Pablo has been through everything with Eli this admission (two OR visits, PICC line placement, chest tubes, therapies, wagon rides, sleepless nights, etc) |
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| Happy boy with a french fry from his daddy. |
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| Eli being silly |
We hung out until the evening when Eli was moved from the PICU to the third floor. Zachary was fascinated with Eli's rolling crib and the fact it fit on an elevator.
After we helped get Daddy & Eli settled in, Z & I headed south to Greenwood. He decided he wanted Denny's for supper. In the parking lot he said he just loved their pizza and goldfish crackers. That's exactly what he ordered and ate. Isn't the pizza and goldfish crackers why we all go to Denny's?
Once we got to Ashley's house we did a few chores (I had laundry to do as well as some bottles & pacifiers to wash) and got ready for bed. He had decided that we were going to the Children's Museum on Sunday, even though he'd been there two weeks ago with my sister. It was wonderful to snuggle him to sleep. He fell asleep on my shoulder and holding my hand. I was physically and emotionally exhausted but tried to stay awake as long as I could so I could just feel his hand in mine.
Sunday, May 5, 2013: We packed up & headed to the museum in the late morning. When we got there, we bought a membership. By the time the four of us go two and a half times, it's paid for. Have you met my son with his dino fascination? We'll be there many more times in the course of a year!
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| Practicing our dino roars and stomps before we left Ashley's house |
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| The best way to start any day |
The dinos were our first stop. After that we saw the trains, the blown glass exhibit and play area, Hot Wheels display, Egyptian display, and the gecko area.
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| Our young paleontologist asking questions at the dinosaur exhibit. |
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| Climbing like a gecko |
Bryan was on his way by then and we left the geckos to meet him at the entrance with our new membership card. Zachary had to take Bryan back to the dinosaur area, the blown glass area, then to the geckos. Then he wanted to see the science area and he played there for a long time. The museum was closing soon and to get him out we told him if he wanted the gift shop we had to leave then so it wouldn't close before we got there. He picked out a pair of dinosaur chopsticks for Eli to complement the ones he chose for himself when he visited with my sister. For himself, he chose a small stuffed dino that's similar to the one he got Eli last time.
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| Mommy & Daddy with their blue eyed boy after a fun day at the museum |
We came back to the hospital and after a brief visit, Bryan and Zachary left with Bryan's parents who had sat with Eli so Bryan could join us at the museum. By the four of them leaving together, I got to keep the van. Bryan was returning to work on Monday so now I have my own transportation up here if I need it. Eli & I spent the evening trying to unpack into our new room (our fourth this admission!) and settle in to just be the two of us for a long time.
Monday, May 6, 2013: Eli was NPO (nothing by mouth) at 6am. His wound change was scheduled for noonish but it was able to happen a little earlier. Again, he did well with the sedation, but since he's been sedated so often in such a short period of time, he's starting to build a tolerance to it. It took a little more medicine today to achieve the same effect. The whole process only takes about 15 minutes and he does really well. The meds they use are Ketamine and Versed. I think they may have used Ativan as well on Sunday (not sure since I wasn't here).
The wound is looking even better than I thought it would after seeing it Saturday. His next scheduled change is for Wednesday. They're hoping to let him last until Saturday for the next change, but we'll know more after Wednesday. Once Eli was awake enough to eat and drink, he had a good lunch! He doesn't eat a lot at once, but he eats several bites of things throughout the day. Today, he ate a pretty fair amount in a short time and then took a much needed two plus hour nap. He did well with supper too and is asleep as I type this.
The plan for Tuesday is to resume some Physical Therapy. He hasn't had any since last Wednesday, the day his chest tube was accidentally pulled out. Oh, yes, his chest tube drainage has been steadily decreasing. Nothing yet has been said about when we may be rid of it.
As of now, we don't have any guess how long we'll be here. The wound vac is working great at healing him, but you have to remember he has a three inch incision about an inch and a half deep into his chest. He's doing great, but it still takes time. No one has ventured any guesses, but I think it's safe to assume we'll be here for at least two more weeks.
Zachary and Bryan went fishing tonight at my mom's pond. They had quite a catch and Zachary is looking forward to eating some fish! I know he misses me & Eli, but it's already improved his mood to have Daddy home. Hopefully spending some time with me this weekend helped him as much as it helped me!
Tuesday, May 7, 2013: Eli got a blood transfusion last night. His hematocrit was lower than they'd prefer for a single ventricle baby recovering from two surgeries in three weeks and trying to heal a large wound in his chest. Blood was ordered yesterday morning. It was finally available by 3am. Eli's a type O, so if it took that long to match him I can only guess that the blood supply is low. {Insert plea for blood donation from anyone who is able to donate. FYI: Eli has received 8 units of blood this admission alone.} Because of his nighttime medication schedule, they've changed when his vitals are taken so they can coincide with medication times throughout the night. That gives him more opportunity for sleep. That didn't happen last night though because of the blood administration. Because of that we slept in this morning (as much as you can in the hospital!).
In addition to his regular visits from cardiology and infectious disease, we met with a social worker who introduced me to some programs that may be available to us for Eli. Some are financial and some are support systems. She suggested that we apply for some of the financial assistance simply to get our foot in the door as Eli has an ongoing medical condition and will need care for the rest of his life. The other meeting we had was with dietary. They're trying to figure out the best tube feeding for him based on his oral intake. Protein is crucial to wound healing and that's usually not one of Eli's strong points in a meal. They're impressed with the variety and amount he does have, but agree we need to be a little more aggressive on his tube feedings. When we feed at home and so far here in the hospital we've used a formula that is 30cal/ounce (a 1 calorie per 1 cc of fluid ratio). They're changing it to 1.5 calories per cc formula and attempting to increase the rate of his infusion so he gets more in the same amount of time. Depending on how he tolerates that for the next few nights they may add some protein powder to the formula to increase his overall calories and protein. Ideally he should have about 1000 calories/day. If he tolerates the new formula at a faster rate and the protein powder, that means he'll receive 540 calories via tube feed and his full requirement of protein. We'll see how the next few days go.
His next dressing change is Wednesday. We're aiming for it to happen between 8 and 9am so we don't have to keep him NPO all morning. Based on what they see with the wound change tomorrow, they'll decide when his next one will be.
I'll try to be better at updating daily or every other day. This weekend was fun and I wasn't on the computer much, but overall it's easier for me to keep track if I do it more often! Thanks for your prayers and support!
Friday, May 3, 2013
Day 16, Post Op Fontan (May 3)
Yesterday I wrote that Eli's wound vac dressing would be changed today. This morning we found out that in addition to the wound vac he needed another chest tube. The fluid built up again on the right side where his chest tube had been pulled out (accidentally) the other day. Instead of just getting Versed like he did yesterday, he had to be knocked out for all of it.
Once they had him asleep I had to leave the room. I waited about 30 minutes before they came to get me. He was still asleep but starting to wake up. The wound vac was pretty much the same as yesterday's except they added a piece of foam over the clear dressing. Through the morning Eli had some breakthrough drainage come out of the dressing. It was covered with gauze & Tegaderms (clear dressings usually used over an IV site). I noticed his blanket moving over his chest at one point this morning and found he had picked a hole in the Tegaderm. He had two fingers underneath it just feeling around! He wasn't close to his incision, but close enough! This foam might help prevent some of his exploration.
Dr. Abraham placed a chest tube in almost the same spot the other one was. He drained off 130cc of fluid (4 1/3 ounces) and sent a specimen for culture. They want to see if there's any infection in the chest fluid that may need an alteration in antibiotics. As of now, because of what was seen yesterday in the OR, Eli is being treated as if his sternum is infected. That's an osteoitis (bone infection). The treatment for that is 3-6 weeks of antibiotic therapy. You know, kind of what we're already doing. If the chest fluid is positive for anything, we'll have to add another antibiotic to our routine.
We'll stay in the PICU again tonight because Dr. Abraham wants another dressing change tomorrow. He won't be here for this one so the hospitalist and wound care team will do it. He said he would leave it up to the hospitalist to decide how much sedation Eli has (Versed versus just getting some morphine). After that's done we'll find out if we'll stay longer in PICU or go to the floor. We're okay wherever he is, it's just weird not knowing. They're working on setting a time for tomorrow's dressing change. He'll have to stop eating and drinking four hours prior to it, so we have to figure out what time frame he can have food and feed him. It's funny because nutrition is extremely important to wound healing but we have to keep him NPO so much because he has to be somewhat sedated for the dressing changes. Thank God he has a feeding tube.
Dr. Belcher didn't round today but his nurse practitioner did. We even knew her because she used to be the nurse practitioner for the PICU during Eli's first two surgeries. We had noticed she wasn't here when we were in PICU after surgery a couple weeks ago and now we know why! It's nice that she's the NP for infectious disease because she really knows Eli's history.
Eli's now resting in his crib. He's craving diversion and is watching a movie on the portable DVD player and demanded the tv be on also. He was finally able to get some milk (first bottle since about 6 this morning) and I can order him a tray soon. He was hurting a little but ago but a dose of morphine made him almost talkative! The nurse pulled another 35cc from his chest tube (just over an ounce) so getting that fluid off has to feel better.
Bryan and Zachary got the yard/jungle mowed today and even squeezed in some golf time (in the yard). Bryan said Z had a good day at school and they ate leftover Bobe's for lunch. I think some Daddy time was exactly the medicine Zachary needed. They're going to come up here on Saturday to visit. The last time I had to wait a week to see Zachary, he looked like he'd grown a lot in that week! I'm sure it will be the same this time.
Thanks for all the prayers and encouragement. They really do help. I was having a very rough morning. I felt so sorry for myself but kept trying to remember that Eli is the one who is physically suffering. At just the right time, I got a text from Caleb's mom and she was saying some very sweet things. Reading things like that and all the messages you leave on Facebook and in the cards you're sending really help me cheer up. And we get to see Zachary tomorrow! That will help cheer all of us up!
Once they had him asleep I had to leave the room. I waited about 30 minutes before they came to get me. He was still asleep but starting to wake up. The wound vac was pretty much the same as yesterday's except they added a piece of foam over the clear dressing. Through the morning Eli had some breakthrough drainage come out of the dressing. It was covered with gauze & Tegaderms (clear dressings usually used over an IV site). I noticed his blanket moving over his chest at one point this morning and found he had picked a hole in the Tegaderm. He had two fingers underneath it just feeling around! He wasn't close to his incision, but close enough! This foam might help prevent some of his exploration.
Dr. Abraham placed a chest tube in almost the same spot the other one was. He drained off 130cc of fluid (4 1/3 ounces) and sent a specimen for culture. They want to see if there's any infection in the chest fluid that may need an alteration in antibiotics. As of now, because of what was seen yesterday in the OR, Eli is being treated as if his sternum is infected. That's an osteoitis (bone infection). The treatment for that is 3-6 weeks of antibiotic therapy. You know, kind of what we're already doing. If the chest fluid is positive for anything, we'll have to add another antibiotic to our routine.
We'll stay in the PICU again tonight because Dr. Abraham wants another dressing change tomorrow. He won't be here for this one so the hospitalist and wound care team will do it. He said he would leave it up to the hospitalist to decide how much sedation Eli has (Versed versus just getting some morphine). After that's done we'll find out if we'll stay longer in PICU or go to the floor. We're okay wherever he is, it's just weird not knowing. They're working on setting a time for tomorrow's dressing change. He'll have to stop eating and drinking four hours prior to it, so we have to figure out what time frame he can have food and feed him. It's funny because nutrition is extremely important to wound healing but we have to keep him NPO so much because he has to be somewhat sedated for the dressing changes. Thank God he has a feeding tube.
Dr. Belcher didn't round today but his nurse practitioner did. We even knew her because she used to be the nurse practitioner for the PICU during Eli's first two surgeries. We had noticed she wasn't here when we were in PICU after surgery a couple weeks ago and now we know why! It's nice that she's the NP for infectious disease because she really knows Eli's history.
Eli's now resting in his crib. He's craving diversion and is watching a movie on the portable DVD player and demanded the tv be on also. He was finally able to get some milk (first bottle since about 6 this morning) and I can order him a tray soon. He was hurting a little but ago but a dose of morphine made him almost talkative! The nurse pulled another 35cc from his chest tube (just over an ounce) so getting that fluid off has to feel better.
Bryan and Zachary got the yard/jungle mowed today and even squeezed in some golf time (in the yard). Bryan said Z had a good day at school and they ate leftover Bobe's for lunch. I think some Daddy time was exactly the medicine Zachary needed. They're going to come up here on Saturday to visit. The last time I had to wait a week to see Zachary, he looked like he'd grown a lot in that week! I'm sure it will be the same this time.
Thanks for all the prayers and encouragement. They really do help. I was having a very rough morning. I felt so sorry for myself but kept trying to remember that Eli is the one who is physically suffering. At just the right time, I got a text from Caleb's mom and she was saying some very sweet things. Reading things like that and all the messages you leave on Facebook and in the cards you're sending really help me cheer up. And we get to see Zachary tomorrow! That will help cheer all of us up!
Thursday, May 2, 2013
Day 15, Post Op Fontan (May 2)
Last night was one of our toughest nights. He cried all night for a bottle. He couldn't have anything after 11pm so we had let him eat anything he wanted through the evening. He had lots of bites of things (one bite of this, two bites of something else, etc) and also had a tube feeding going until 11pm. His procedure was scheduled to start at 7am, so nothing after 11pm. It was a long night. We've been begging him to eat for days and now when he is begging us for something to eat or drink we couldn't give it to him. But as Sara (surgical nurse practitioner) pointed out, him asking for something is a good sign that he's feeling better.
He was scheduled to have a chest xray just before going to the OR. When we tucked him in last night we thought the spot on his chest was looking bigger than it had earlier in the day. When this morning rolled around he was still covered up and we didn't see it. The xray tech asked Bryan to hold Eli up a little so she could slip the board under him. When she put the light on him we noticed his blanket was saturated. I pulled it down and saw that his incision had opened in an area and fluid was leaking out. Most likely, it had increased in size overnight and the pressure put on it when Eli was held up for the xray caused it to rupture. While Bryan and the tech finished the xray, I got his nurse. She came in and decided to call Sara just to let her know. It obviously still needed to be opened up, but it was just strange how our day started. I was able to get his blanket into the washer before we left and miraculously it came totally clean! We knew it was chancy to bring personal items to the hospital, but you've got to have some familiar things around!
We were taken to the OR area where we've had to leave him for his three open heart surgeries. It was comforting when we found out his anesthesiologist was Dr. Harrison. He had Eli for his very first surgery and his G-tube surgery. Eli was given some medicine (Versed) in my arms which made him relax. Then he was wheeled to the OR and Bryan and I were escorted to the surgical waiting area (we know the path pretty well by now and I'm not sure an escort was necessary!). When we got the call that surgery was done we were told to go to the PICU because he was taken there so they could do some dressing changes. While we waited, Sara came and talked to us. Then Dr. Abraham came in.
He said Eli did great and was recovering fine. The infection was down to the bone. He didn't think the pacer wires were involved so he did not remove Eli's pacemaker, but made it absolutely clear that it's something that could still happen. He felt good about the "cleaning" he did. Initially he was hoping to only have to make an incision about an inch long. However, after getting in there and seeing what was happening, he had to make a much larger incision due to tunneling (not just one large "hole" but smaller tunnels leading off it). Eli's incision is about 2 1/2-3 inches long (more than half the length of his surgical incision). He was brought to the PICU to recover and to get a wound vac attached to him. Overall, Dr. Abraham thought things went well but only time will tell.
In regards to his chest tube, he did not get one today. The chest x-ray showed some fluid but it wasn't a large amount and they're hoping he can take care of it on his own. They really want to avoid more tubes in the boy. Dr. Harrison also worked on Eli's troublesome PICC line and he pulled it out one centimeter. So far we've not had any problems with it & we're hoping that took care of it.
When we got to see him he was sleeping peacefully. He had a large dressing covering most of his chest and we couldn't see anything. The hospitalist was with him and we asked when we'd know if he was in the PICU or a few hours or if it would be a transfer. She thought they'd probably keep him overnight, so I went back upstairs and started packing. It was a little sad to leave our third floor room with a private mini-fridge and our own shower, but we know we'll be back in the area soon!
While I packed, Bryan stayed with Eli as he was waking up. When I got back to the PICU room he was propped up in his crib drinking a bottle and eating a cookie (cookie courtesy of my friend Jennifer Lee who brought us treats from Paradise Bakery). Bryan said Eli was asking for a "Blue Cookie." At first Bryan thought it was the meds talking until he figured out Eli wanted a sugar cookie covered in M&Ms. The boy knows what he means! They're huge cookies and he ate almost a whole one.
After he was comfortable and napping, Bryan and I went to lunch. We needed to talk about Zachary. I guess he had a rough time at bedtime last night. He was crying and asked Mamaw Betty if he was in trouble for crying because he missed us. Of course she told him he wasn't and tried to comfort him, but she didn't quite know what to tell him about when we'd all be together. He loves his grandparents but he needs his parents. We decided Bryan would go back to Washington and be there in time to take Z to his ball game tonight (he was 3 for 3 but told me he had five hits?). They ate supper at Bobe's and Bryan will take him to school tomorrow. Depending on how things are going they will come up here either Friday or Saturday. Bryan will stay with Eli while Zachary and I spend the night at Aunt Ashley's. We'll do something fun together (either three of us or four of us) before they come back to Washington. Even though things are still busy with Eli, they're not bad enough that we need both of us here all the time. We hate being apart and having to decide which parent goes with which child, but that's the point we're at now. I know this time with Bryan will be good for Zachary I cannot wait to see him this weekend. I'm also looking forward to spending the night with him :) His snuggles can't be beaten! In order for Bryan to be back to Washington in time for Z's game, he had to leave before Eli's wound vac. It was hard on him to leave us, but easy because he was going home to Zachary!
At 11am Eli had to be NPO (nothing by mouth) again for his wound vac application. When they told us he'd be sedated we thought that meant he'd be asleep again, but instead he was given Versed and morphine. He was very groggy and out of it, but awake the whole time. He cried but was easily soothed. I held his hands and kissed his head a lot while the medicine took effect. Then Dr. Abraham removed the dressing he'd placed in the OR. Next he took out packing from the wound. It was bleeding and he used lots of gauze pads to dry it up and assess the area. Since I was still holding Eli's hands I had a great view into the wound. This sounds gross and some of you may not like it but it was neat to see. Not many people get to see in their child's chest. I saw something silver and asked if that was one of the sternal wires (wire used to hold the breastbone back together after his surgery two weeks ago). Dr. Abraham looked up with a smile and seemed surprised I was looking in. When he was done I grabbed our camera and actually took a couple pictures. Don't worry, I'm not posting them. I took them for Bryan to see and to put them in a file for Eli to look at someday if he wants to. The tissue looked very clean and healthy to me. I was worried it would look infected and "drippy" (used that word in an effort to not gross some of you out with other words I could have used!)
After Dr. Abraham was done the wound vac team stepped up. One lady put special tape along the edges of the open incision. Then she measured and foam was cut to her measurements. White foam that was moistened with something (didn't see that part) was tucked into the big open area. Two layers of black foam were laid on top of that. A clear dressing was placed over all of it. Then she took scissors and cut a hole in the middle of the dressing. Another piece of black foam with the vac attached to it was laid on top of the hole and a clear dressing placed over the whole thing. The tube was attached to the machine and it was turned on. The result was like watching an infomercial for those space saving storage bags. The extra air was sucked out and it will keep constant suction on the wound. The hose will drain any blood or drainage produced by the wound. The dressing and foams will be changed tomorrow (Friday) and then probably every other day after that. The idea is that it will remove any pus or drainage produced by the wound and promote quicker healing from within.
As he gets used to them changing it, less and less sedation will be used. They will judge Eli based on his response and proceed accordingly. I want to get another picture tomorrow because I wasn't able to get one showing the wire I saw. I don't know if I'll be able to, but I definitely want to try to add that to our collection. After it was done I asked Sara & Dr. Abraham for a photo with Eli. We've never done that before and it's important to us to document these two who are some of the most important people on his healthcare team. I'll load those on another post. Sometime I'd love to get a picture of Eli smiling with one or both of them, but that probably won't happen for a while!
Since then, he's been sleeping peacefully. When he's awake enough to eat he's allowed a regular diet, but he's still too tired. We gave him another dose of morphine an hour ago because it was obvious he was hurting a lot. Who wouldn't? A tube feeding was started for him. Good nutrition is always important but its importance increases tenfold when it comes to wound healing. Dietary will consult tomorrow to determine the most optimal formula for Eli and that will be given every night for at least a week. Of course we'll encourage him to eat whenever he wants, but this will give him an added boost.
Today went much better than we thought it could after how crappy yesterday was. I don't mean to make light of how serious an infection could be, but I still feel that things could be worse. Yes, we're looking at at least another week in the hospital, but at least he's able to be treated. He's breathing and his heart is beating so we just need to keep everything in perspective. I've also talked to Zachary tonight and it was easy to hear, even over the phone, the happiness in his voice. He had a good time at the game, had a good time at supper, and his easy to please attitude is showing again.
Thanks again for all the prayers and offers of help. One of the bright spots yesterday was Bryan bringing some of the mail and packages people have sent for Eli. Zachary has received a lot while at home and Bryan brought Eli's to us. Eli wasn't interested in opening them, but he liked looking at the cards when we showed him. Eli did enjoy some snacks that were in another package. One friend in North Carolina had her students color pages and cards for Eli and sign their names. That envelope was fun to open! Thank you to anyone who has sent a card, care package, or note of encouragement to any of us. The thought of you taking the time to do that warms our hearts!
As always, remember to cherish Every Little Beat....
He was scheduled to have a chest xray just before going to the OR. When we tucked him in last night we thought the spot on his chest was looking bigger than it had earlier in the day. When this morning rolled around he was still covered up and we didn't see it. The xray tech asked Bryan to hold Eli up a little so she could slip the board under him. When she put the light on him we noticed his blanket was saturated. I pulled it down and saw that his incision had opened in an area and fluid was leaking out. Most likely, it had increased in size overnight and the pressure put on it when Eli was held up for the xray caused it to rupture. While Bryan and the tech finished the xray, I got his nurse. She came in and decided to call Sara just to let her know. It obviously still needed to be opened up, but it was just strange how our day started. I was able to get his blanket into the washer before we left and miraculously it came totally clean! We knew it was chancy to bring personal items to the hospital, but you've got to have some familiar things around!
We were taken to the OR area where we've had to leave him for his three open heart surgeries. It was comforting when we found out his anesthesiologist was Dr. Harrison. He had Eli for his very first surgery and his G-tube surgery. Eli was given some medicine (Versed) in my arms which made him relax. Then he was wheeled to the OR and Bryan and I were escorted to the surgical waiting area (we know the path pretty well by now and I'm not sure an escort was necessary!). When we got the call that surgery was done we were told to go to the PICU because he was taken there so they could do some dressing changes. While we waited, Sara came and talked to us. Then Dr. Abraham came in.
He said Eli did great and was recovering fine. The infection was down to the bone. He didn't think the pacer wires were involved so he did not remove Eli's pacemaker, but made it absolutely clear that it's something that could still happen. He felt good about the "cleaning" he did. Initially he was hoping to only have to make an incision about an inch long. However, after getting in there and seeing what was happening, he had to make a much larger incision due to tunneling (not just one large "hole" but smaller tunnels leading off it). Eli's incision is about 2 1/2-3 inches long (more than half the length of his surgical incision). He was brought to the PICU to recover and to get a wound vac attached to him. Overall, Dr. Abraham thought things went well but only time will tell.
In regards to his chest tube, he did not get one today. The chest x-ray showed some fluid but it wasn't a large amount and they're hoping he can take care of it on his own. They really want to avoid more tubes in the boy. Dr. Harrison also worked on Eli's troublesome PICC line and he pulled it out one centimeter. So far we've not had any problems with it & we're hoping that took care of it.
When we got to see him he was sleeping peacefully. He had a large dressing covering most of his chest and we couldn't see anything. The hospitalist was with him and we asked when we'd know if he was in the PICU or a few hours or if it would be a transfer. She thought they'd probably keep him overnight, so I went back upstairs and started packing. It was a little sad to leave our third floor room with a private mini-fridge and our own shower, but we know we'll be back in the area soon!
While I packed, Bryan stayed with Eli as he was waking up. When I got back to the PICU room he was propped up in his crib drinking a bottle and eating a cookie (cookie courtesy of my friend Jennifer Lee who brought us treats from Paradise Bakery). Bryan said Eli was asking for a "Blue Cookie." At first Bryan thought it was the meds talking until he figured out Eli wanted a sugar cookie covered in M&Ms. The boy knows what he means! They're huge cookies and he ate almost a whole one.
After he was comfortable and napping, Bryan and I went to lunch. We needed to talk about Zachary. I guess he had a rough time at bedtime last night. He was crying and asked Mamaw Betty if he was in trouble for crying because he missed us. Of course she told him he wasn't and tried to comfort him, but she didn't quite know what to tell him about when we'd all be together. He loves his grandparents but he needs his parents. We decided Bryan would go back to Washington and be there in time to take Z to his ball game tonight (he was 3 for 3 but told me he had five hits?). They ate supper at Bobe's and Bryan will take him to school tomorrow. Depending on how things are going they will come up here either Friday or Saturday. Bryan will stay with Eli while Zachary and I spend the night at Aunt Ashley's. We'll do something fun together (either three of us or four of us) before they come back to Washington. Even though things are still busy with Eli, they're not bad enough that we need both of us here all the time. We hate being apart and having to decide which parent goes with which child, but that's the point we're at now. I know this time with Bryan will be good for Zachary I cannot wait to see him this weekend. I'm also looking forward to spending the night with him :) His snuggles can't be beaten! In order for Bryan to be back to Washington in time for Z's game, he had to leave before Eli's wound vac. It was hard on him to leave us, but easy because he was going home to Zachary!
At 11am Eli had to be NPO (nothing by mouth) again for his wound vac application. When they told us he'd be sedated we thought that meant he'd be asleep again, but instead he was given Versed and morphine. He was very groggy and out of it, but awake the whole time. He cried but was easily soothed. I held his hands and kissed his head a lot while the medicine took effect. Then Dr. Abraham removed the dressing he'd placed in the OR. Next he took out packing from the wound. It was bleeding and he used lots of gauze pads to dry it up and assess the area. Since I was still holding Eli's hands I had a great view into the wound. This sounds gross and some of you may not like it but it was neat to see. Not many people get to see in their child's chest. I saw something silver and asked if that was one of the sternal wires (wire used to hold the breastbone back together after his surgery two weeks ago). Dr. Abraham looked up with a smile and seemed surprised I was looking in. When he was done I grabbed our camera and actually took a couple pictures. Don't worry, I'm not posting them. I took them for Bryan to see and to put them in a file for Eli to look at someday if he wants to. The tissue looked very clean and healthy to me. I was worried it would look infected and "drippy" (used that word in an effort to not gross some of you out with other words I could have used!)
After Dr. Abraham was done the wound vac team stepped up. One lady put special tape along the edges of the open incision. Then she measured and foam was cut to her measurements. White foam that was moistened with something (didn't see that part) was tucked into the big open area. Two layers of black foam were laid on top of that. A clear dressing was placed over all of it. Then she took scissors and cut a hole in the middle of the dressing. Another piece of black foam with the vac attached to it was laid on top of the hole and a clear dressing placed over the whole thing. The tube was attached to the machine and it was turned on. The result was like watching an infomercial for those space saving storage bags. The extra air was sucked out and it will keep constant suction on the wound. The hose will drain any blood or drainage produced by the wound. The dressing and foams will be changed tomorrow (Friday) and then probably every other day after that. The idea is that it will remove any pus or drainage produced by the wound and promote quicker healing from within.
As he gets used to them changing it, less and less sedation will be used. They will judge Eli based on his response and proceed accordingly. I want to get another picture tomorrow because I wasn't able to get one showing the wire I saw. I don't know if I'll be able to, but I definitely want to try to add that to our collection. After it was done I asked Sara & Dr. Abraham for a photo with Eli. We've never done that before and it's important to us to document these two who are some of the most important people on his healthcare team. I'll load those on another post. Sometime I'd love to get a picture of Eli smiling with one or both of them, but that probably won't happen for a while!
Since then, he's been sleeping peacefully. When he's awake enough to eat he's allowed a regular diet, but he's still too tired. We gave him another dose of morphine an hour ago because it was obvious he was hurting a lot. Who wouldn't? A tube feeding was started for him. Good nutrition is always important but its importance increases tenfold when it comes to wound healing. Dietary will consult tomorrow to determine the most optimal formula for Eli and that will be given every night for at least a week. Of course we'll encourage him to eat whenever he wants, but this will give him an added boost.
Today went much better than we thought it could after how crappy yesterday was. I don't mean to make light of how serious an infection could be, but I still feel that things could be worse. Yes, we're looking at at least another week in the hospital, but at least he's able to be treated. He's breathing and his heart is beating so we just need to keep everything in perspective. I've also talked to Zachary tonight and it was easy to hear, even over the phone, the happiness in his voice. He had a good time at the game, had a good time at supper, and his easy to please attitude is showing again.
Thanks again for all the prayers and offers of help. One of the bright spots yesterday was Bryan bringing some of the mail and packages people have sent for Eli. Zachary has received a lot while at home and Bryan brought Eli's to us. Eli wasn't interested in opening them, but he liked looking at the cards when we showed him. Eli did enjoy some snacks that were in another package. One friend in North Carolina had her students color pages and cards for Eli and sign their names. That envelope was fun to open! Thank you to anyone who has sent a card, care package, or note of encouragement to any of us. The thought of you taking the time to do that warms our hearts!
As always, remember to cherish Every Little Beat....
Wednesday, May 1, 2013
Day 14, Post Op Fontan (May 1)
Just another day in paradise....
Sooooo,
that's been our day. That and the occasional low grade fever they are
accounting to the infection along his incision. We'll let you know in
the morning how he's doing! Sorry this post doesn't have much more info, but it's only 4:30 and it's been a long day. We've been here for two weeks now and are about to hand our son over to be put to sleep for the fourth time. I'm upset that his chest tube came out, upset that it came out on my watch, and sad that he just flat out doesn't feel well.
Brighter news, Bryan's back at the hospital with us and Eli was glad to see his Daddy. He even smiled at Bryan an couple times. It was so precious to see that.
Please pray for Eli as he has another procedure (or two!) in the morning!
Eli's
incision has a "lump" that is red. Sara & Dr. Abarbanell didn't
like the way it looked so they were going to have Dr. Abraham look at it
for possible drainage and irrigation. After they left and before he
got here, we had PT. Eli walked quite a bit and got a wagon ride. When
it was over we came back in the room and were persuading him to use a
bench to climb up onto the couch. In the process of holding his oxygen
tank, telemetry box, other monitors and helping him keep his balance,
his chest tube got pulled out. It didn't seem to hurt him but we had to
move quickly to get it covered because it is an opening into his lung
cavity and could possibly collapse his lung if not taken care of. Sara
was still on the floor and she was in the room in no time. She got it covered
and they'll do an xray in the morning to determine if he needs another
one placed or if he can handle the fluid on his own.
Later,
Dr. Abraham came by to look at the incision. He thinks it's infected
in that area but doesn't think it's very deep. He debated just doing it
at bedside, but because it's in the area of the pacer wires he wants to
take Eli to the OR in the morning so he can clean it out really well.
That way if it turns out to be deeper than he thinks it is, he can deal
with it properly. Also, the chest xray will be done prior to going to
the OR so they'll know if they need to place a new chest tube or not.
So
Eli will not have anything to eat or drink after 11pm. He's scheduled
for the OR at 7am. It should only take about 5 minutes but Dr. Abraham
wants to be prepared in case he needs to do more. If they place a chest
tube it will be another 15 minutes or so. Then he'll go to recovery
and back up here to his room.
In addition to those issues, his PICC line is being troublesome. There are times when it won't flush at all and it varies from lumen to lumen (he has a double lumen). We were worried that it was clotting off, but that would be a little surprising since he's only had it for a week. Not unheard of, but a little surprising. Throughout the day we've decided it's just positional. That means the end of it where the fluid/medicine/flush would exit is next to the wall of a vessel or next to a valve that closes it off. Nothing majorly wrong with that but a pain in the keister (yes, I looked up the correct spelling). It could potentially be an issue when we have him home and are trying to administer his antibiotics. We'll worry later.
Brighter news, Bryan's back at the hospital with us and Eli was glad to see his Daddy. He even smiled at Bryan an couple times. It was so precious to see that.
Please pray for Eli as he has another procedure (or two!) in the morning!
Tuesday, April 30, 2013
Days 12 & 13, Post Op Fontan (April 29 & 30)
Both days have been busy for Eli. He's been in a very sour mood since surgery and doesn't smile much. If he does, it's clearly by accident. He cries as soon as anyone walks into the room. The boy is done. He's been through this before, he's too smart when it comes to the hospital routine and he's not in the mood for it. So we were pleasantly surprised when he took a liking to his student nurse on Monday. It was a tall guy named Josh who has a two year old son as well. First of all, Eli prefers male nurses to the plethora of females who take care of him. Secondly, Josh knew not to push too hard, but how to get the things done he needed to. Thirdly (and maybe most importantly) he had pictures on his smartphone of his son and could talk to Eli about him.
Whatever the reason that Eli was in a semi-tolerable mood Monday, we were happy. Eli even requested a wagon ride in the morning. As we made the circle around the hallways, we stopped at the big window and showed him the play area outside. Yes, we're on the third floor, but there is a playground for patients who are allowed to use it, weather permitting. Monday was a great day to be outside and Eli said yes when we asked him if he'd go out.
We brought him back to the room for pants and shoes and took him out. Josh accompanied us and brought a towel for the leftover rain puddles on some of the items. Eli stood outside the wagon and started crying seconds into the stand.
We asked him what he wanted to play on, thinking he'd point to the little Playskool slide. But no, our son points to the huge climbing tower and wants to go up. Remember, this is a child who hasn't stood more than a combined minute since surgery and in addition to not being able to pick him up under the arms, we also have to be careful of his chest tube, carry a telemetry box (heart monitor), and deal with his "portable" oxygen tank on wheels (portable my foot, the thing is half my size). But, Daddy & Josh scoop him up along with his previously mentioned necessities and climb up a level. He just wanted held and enjoyed feeling the breeze and sunshine. I snapped a couple pics of them up there then Josh came down and took a picture of the three of us.
When we went back in Eli wanted to keep riding in the wagon. We made a couple more circles and then took him back to bed. He was a tired little monkey.
The rest of the day was pretty uneventful. We did a couple more wagon rides and he had a therapy session which he hated! How dare this woman bring in a play mat and toys?!?! She left the mat and a bench in the room. The bench is to encourage him to sit on it and make it easier for him to bring himself to a standing position.
Monday night he had a slight fever (100.3) but it was taken care of with a dose of Motrin. I was concerned because he hasn't had much fever despite the staph infection. When we talked to Dr. Belcher about it Tuesday morning, he wasn't too concerned. He said it's common to have a higher temp in the early evening hours, he liked that one dose of Motrin lowered it, and that it wasn't that high to begin with. He said he'll keep watching him and see if it continues and under what circumstances. He's a very calm, laid back guy but also knows lots of details about Eli and we're comfortable with him.
Tuesday morning was a little rough for Eli. Bryan left to come to Washington so he could hang out with Zachary and go to his ball game. Eli seemed to know Daddy wasn't just going to the store and he was VERY out of sorts all morning. We took four wagon rides today! It was difficult for me at first because I wasn't used to navigating the wagon and the oxygen tank, but we're pros at it now. Unless I have to open a door. After the first wagon ride we sat on the floor and played with some toys on the play mat. A dog came to visit (Eli was not a fan) then PT came in. I told her everything Eli had done by then and he plainly told her he wanted bed. She said that's fine but he had to walk there. With some assistance and a lot of protests, he walked to a chair she had placed by his bed. Then she helped him into the chair, to a standing position, and into bed. He did a lot of it himself which just showed us he can but it takes more energy than he's willing to give. After a brief nap he had lunch. He's tired of being in bed so he tried the big chair.
After another wagon ride (#2 or #3?) he got a bath. He REALLY needed one and to have his hair washed. He screamed the whole time but the nurse and aide worked very quickly and he smelled so good when he was done.
He snuggled in my arms on the couch for a while before going back to his freshly changed bed. We took another wagon ride while waiting for supper to arrive. He only ate 1/2 a dinner roll for supper but he was so tired he fell asleep on my lap. With Bryan gone, I'm getting a lot more snuggle time! Eli also enjoyed some candy from his nurse Steph. There was a chocolate sale in the lobby today and she brought me some Peanut Butter Meltaways. (I told you they take good care of us here!) Eli saw me eat one and starting pointing while saying "Choc!" He ate two by bedtime (he asked for more but mean Mommy thought that was enough!). He ate 8 grapes before bed and is sleeping now. Hopefully he's tired enough that he sleeps well tonight and feels rested in the morning. He's been restless for a few nights now and needs some quality sleep. He had a low fever again tonight about the same time, but we'll just see what Dr. Belcher says in the morning.
Zachary and Bryan had lunch together today and did some errands around town. Z was excited because he got two suckers at the bank! His game went well and he had three hits :) They were enjoying frozen pizza for supper and going to sleep upstairs in the big bed. Bryan will take Zachary to school in the morning and head back up to Indy. It was hard on him to leave Eli and I know it will be hard on him to leave Z. It's tough being torn between our two perfect boys ;)
My friend Katie updated her blog today about Caleb. May 1 will be the six month anniversary of their admission to Riley and the start of their wait on the transplant list. They are a very positive and faithful family, but that's a lot to ask of anyone! They have seen three or four children who were admitted after Caleb receive new hearts while they're still praying for their call. Of course they're happy for those families, but it's hard on them and isn't getting any easier. Please include them in your prayers. Just when I'm feeling weary because we've been here for 15 days and counting, I think of their endurance and realize I have nothing to complain about. Pray for them to be energized with hope and for the call about Caleb's new heart to come soon. Luckily, he's been pretty stable for a while now so pray for that to continue.
Thank you all for your prayers for us and our friends. We see that the power of prayer is incredible and inspiring.
Whatever the reason that Eli was in a semi-tolerable mood Monday, we were happy. Eli even requested a wagon ride in the morning. As we made the circle around the hallways, we stopped at the big window and showed him the play area outside. Yes, we're on the third floor, but there is a playground for patients who are allowed to use it, weather permitting. Monday was a great day to be outside and Eli said yes when we asked him if he'd go out.
We brought him back to the room for pants and shoes and took him out. Josh accompanied us and brought a towel for the leftover rain puddles on some of the items. Eli stood outside the wagon and started crying seconds into the stand.
 |
| Crying because he had to stand |
We asked him what he wanted to play on, thinking he'd point to the little Playskool slide. But no, our son points to the huge climbing tower and wants to go up. Remember, this is a child who hasn't stood more than a combined minute since surgery and in addition to not being able to pick him up under the arms, we also have to be careful of his chest tube, carry a telemetry box (heart monitor), and deal with his "portable" oxygen tank on wheels (portable my foot, the thing is half my size). But, Daddy & Josh scoop him up along with his previously mentioned necessities and climb up a level. He just wanted held and enjoyed feeling the breeze and sunshine. I snapped a couple pics of them up there then Josh came down and took a picture of the three of us.
 |
| Hanging out on Peyton's Playground (that's not the name of it, just what came out as I typed!) |
The rest of the day was pretty uneventful. We did a couple more wagon rides and he had a therapy session which he hated! How dare this woman bring in a play mat and toys?!?! She left the mat and a bench in the room. The bench is to encourage him to sit on it and make it easier for him to bring himself to a standing position.
Monday night he had a slight fever (100.3) but it was taken care of with a dose of Motrin. I was concerned because he hasn't had much fever despite the staph infection. When we talked to Dr. Belcher about it Tuesday morning, he wasn't too concerned. He said it's common to have a higher temp in the early evening hours, he liked that one dose of Motrin lowered it, and that it wasn't that high to begin with. He said he'll keep watching him and see if it continues and under what circumstances. He's a very calm, laid back guy but also knows lots of details about Eli and we're comfortable with him.
Tuesday morning was a little rough for Eli. Bryan left to come to Washington so he could hang out with Zachary and go to his ball game. Eli seemed to know Daddy wasn't just going to the store and he was VERY out of sorts all morning. We took four wagon rides today! It was difficult for me at first because I wasn't used to navigating the wagon and the oxygen tank, but we're pros at it now. Unless I have to open a door. After the first wagon ride we sat on the floor and played with some toys on the play mat. A dog came to visit (Eli was not a fan) then PT came in. I told her everything Eli had done by then and he plainly told her he wanted bed. She said that's fine but he had to walk there. With some assistance and a lot of protests, he walked to a chair she had placed by his bed. Then she helped him into the chair, to a standing position, and into bed. He did a lot of it himself which just showed us he can but it takes more energy than he's willing to give. After a brief nap he had lunch. He's tired of being in bed so he tried the big chair.
 | ||
| He wasn't sure at first but he ended up doing really well in the chair. He ate a decent amount for lunch too. |
 | ||
| I wasn't much help because I was laughing at him and taking pictures. |
Zachary and Bryan had lunch together today and did some errands around town. Z was excited because he got two suckers at the bank! His game went well and he had three hits :) They were enjoying frozen pizza for supper and going to sleep upstairs in the big bed. Bryan will take Zachary to school in the morning and head back up to Indy. It was hard on him to leave Eli and I know it will be hard on him to leave Z. It's tough being torn between our two perfect boys ;)
My friend Katie updated her blog today about Caleb. May 1 will be the six month anniversary of their admission to Riley and the start of their wait on the transplant list. They are a very positive and faithful family, but that's a lot to ask of anyone! They have seen three or four children who were admitted after Caleb receive new hearts while they're still praying for their call. Of course they're happy for those families, but it's hard on them and isn't getting any easier. Please include them in your prayers. Just when I'm feeling weary because we've been here for 15 days and counting, I think of their endurance and realize I have nothing to complain about. Pray for them to be energized with hope and for the call about Caleb's new heart to come soon. Luckily, he's been pretty stable for a while now so pray for that to continue.
Thank you all for your prayers for us and our friends. We see that the power of prayer is incredible and inspiring.
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