Eli has still been running nighttime fevers and some low grade fevers during the day. Our last post explained why we took him to the hospital for blood work last Thursday night. On Friday we found out his CBC was normal, including a normal white blood cell count. One of his cardiologists called that afternoon to get another update. We were still waiting on some of the other blood work to come back, but he felt safe saying it's probably a virus and just has to run its course. He wanted us to call back on Monday to update them how the weekend went. The fevers continued through the weekend, but Eli was also playing and being his normal self most of the time. His appetite was even starting to increase.
We called Indy with an update on Monday morning. Later that afternoon, Sara called. She's Dr. Abraham's (surgeon) nurse practitioner. She wanted to hear for herself what was going on with Eli. She said she'd call if they wanted to do anything different. We later got a call from Dr. Amy's office saying that Dr. Amy & Dr. Steinberg (Indy cardiologist I spoke with on Friday & pacemaker guru of the group) had spoken with each other. One of Eli's blood tests (C-Reactive Protein) came back elevated (52). That test is an indicator of an inflammatory reaction taking place within the body. The doctors want to repeat that lab this coming Friday. Also, because he was still running an occasional low grade fever accompanied by the nighttime spikes, Dr. Amy wanted to see him in the office today to evaluate him again.
The doctor appointment went well. Eli has no obvious signs of infection (no red throat or infected ears, incisions look good, etc). His lungs sound good, but we went ahead with a chest x-ray because he's tricked us before with respiratory issues despite sounding clear. A quick glance at the image didn't show anything significant although we don't have the radiologist's interpretation yet. Eli was running a low fever again through the day (99.6) which is normally not concerning except it's accompanied by the late evening temperature spikes.
Our best guess at this point is that he has an inflammatory response occurring due to the surgeries he's had since mid-April. To recount he's had:
- the Fontan which also included mitral valve repair
- pacemaker placement (this was done at the same time as the Fontan and MV repair, but it is its own incision)
- multiple lines and drains due to the Fontan (two JP drains, an arterial line, and a central line)
- a staph infection in his blood which required removal of the central line and placement of a PICC line
- two pigtail chest tubes
- an abscess on his sternal incision which resulted in another trip to the OR and a wound vac for twelve days, including seven dressing changes
- a third trip to the OR for the diaphragm plication (to lower the right side of his diaphragm as it was creeping up and crowing his lung) which is another incision on his little chest
- another JP drain after the diaphragm plication
Yes, it would make total sense if he has an inflammatory process still going on! We hope that's all it is. That or a viral bug that is just about done with him!
Specific Prayer Requests:
- prayers of thankfulness that Eli is actually feeling pretty good through most of this
- prayers that his fevers stop and his next CRP level decreases (indicating a lessening of the inflammatory response)
- prayers that the four of us are able to take some type of "vacation" prior to Zachary starting school in a few weeks
- prayers for health and strength for some family and friends....there have been some things happen to some loved ones (info that is not ours to pass along and really should remain private anyway) and they could use some extra support!
Thank you for the prayers. Thanks for caring and taking the time to read. We hope each of you remember the true beauty of the Fourth of July holiday and that it's not just about cookouts and fireworks. Stay safe everyone and remember to cherish Every Little Beat...
Tuesday, July 2, 2013
Friday, June 28, 2013
Fever Time :(
I just got Eli to bed. It's almost midnight and I just got the monkey in his crib. Why so late? Well, he's running a fever. This has been happening off and on in the evenings since Sunday night. Today he ran a low grade fever all day and then spiked to 102 after 9:30pm. He did wait until after we saw which NBA team drafted Cody Zeller. He & Zachary were very excited for the draft and were yelling "Victor!" (Victor Oladipo, IU player drafted #2 overall) and "Cody!" Well, that's what Z was yelling. Eli's sounded more like "Vicar!" and "Tody!" It was so neat to see IU guys drafted #2 & #4. Good guys too.
Anyway, back to Eli. He's had these temperature spikes in the late evening since Sunday. One dose of Tylenol had taken care of it, but why was he getting them in the first place? We really didn't worry the first night, but when it kept happening we knew something was up. We still don't know what. On Tuesday (06/25) he had a scheduled check up with the cardiology team in Indy. I say team because it was with several people. Luckily they're all in the same office so it was them who had to take turns seeing Eli, not us rushing around to accommodate them! We saw Dr. Parikh (Eli's main cardiologist in Indy), Dr. Steinberg (cardiologist in charge of the pacemaker), and Sara (surgical nurse practitioner). Overall, the appointment went well. They're happy with how he's doing. He'd even gained a little weight since discharge which made me happy because he doesn't eat as much at home as he did in the hospital. He eats, but he's a busy two year old who has much better things to do than sit down and eat more than three bites at a time. We basically offer him food every 20-30 minutes all day, every day.
Eli had an echo, EKG and his pacemaker was interrogated. That means they hold a device over the area of his body that has the pacer and it feeds info to a machine. They use the machine and that device to check and change settings on the pacemaker as needed. Eli has a dual lead pacemaker which means there's a lead in his atria (top chamber of his heart) and in his ventricle (lower chamber of his heart). Yes, I said chamber for each because Eli's heart is soooo much not like ours that he basically now has one atria instead of two and one ventricle instead of two. Dr. Steinberg has said all along that Eli only required atrial pacing, but since he was in there and you never know what a single ventricle kid will need in the future, he went ahead and placed a dual lead pacer. Now the lead going to the ventricle isn't working. That's really no big deal because Eli wasn't using it anyway, but it is kind of annoying. Dr. Steinberg said we'll just remove it or change it when it's time to change the battery or the atrial lead. Good news is that the important lead, the atrial lead, is working very well. The only thing he changed was Eli's rate. When Eli is awake he's paced at 80 beats per minute, when he's asleep it's 70 beats per minute. If he's really active or upset, he can go higher. The pacer doesn't stop his heart rate from rising because its purpose for Eli is to keep his heart rate up. Prior to the pacer he was in a junctional rhythm which resulted in a very low heart rate for him.
The echo and EKG were good. Eli wasn't thrilled about the echo, but he's so used to these things now that he doesn't actually fight us. He'll scream and reach for us, but he doesn't fight the procedure. Eventually he settles down and doesn't scream, although he doesn't act happy until it's over and he'll put his hands out, shrug a shoulder, cock his head to the side and say "All done?" It's very cute. The echo showed that he does still have some pleural effusion present, but it isn't any worse than before.
When we mentioned the fevers to the cardio team, they weren't too worried. At the time he'd only had two nights of fevers so they said if it continued to get two blood cultures and a couple other blood tests. Getting the tests isn't such a big deal. The part that was going to be tricky was they wanted them while he had the fevers, before any meds were given. He wasn't feverish until the late evening, so that meant we would have to go to the hospital after hours, get out outpatient admission done through the ER (not an ER visit though!), and then go to the lab.
So, that's what we did tonight. The past couple nights he had very low grade temps. Then he had a low grade fever all day today which spiked to 102 this evening. I went to change and gather our blood work order and insurance info. In the meantime he fell asleep on Bryan's lap. Hoping the fever had broken didn't work because I took the temp again and it was the same. So he was woken up as I lifted him off his comfy spot on Daddy's lap and took him to the hospital. We didn't have to wait too long, but from start to finish the whole thing took a little over an hour. Because they needed two blood cultures from him, he had to be stuck twice. Again, he screamed the whole time, but didn't fight it. I don't blame him for screaming. He wasn't feeling well, couldn't have any medicine for it, and it was waaayyy past bedtime in a not so fun place. Luckily, the guy who drew the blood only had to stick him once on each arm. He was very good and I was incredibly grateful for that.
The only other change we're making to Eli's routine is to resume a regular diet (instead of low fat diet) as of Monday July 1. That means instead of this special formula he's getting at night, we'll go back to cans of PediaSure for the nighttime feeds and he'll drink 2% or whole milk instead of skim. We also don't have to watch his diet (any more than a reasonable parent should anyway!). After being on a regular diet for a week, he'll get a chest xray and some blood work. That will show how his body is tolerating the fats well and if it changes the effusion in any negative way.
Tonight's update sounds pretty depressing, but honestly he is doing well. He plays a lot, he's nuts, he runs races (by himself or with us), he plays drums, he doesn't turn blue and he's pretty happy most of the time. He's been a little fussier with these fevers, but who isn't?
While I have your attention, I'd like to ask for prayers for a new heart warrior. Liam was recently diagnosed with cardiomyopathy. His mom was one of our nurses during Eli's seven week stay, and Eli was very comfortable with her (that was a HUGE deal!). The day Eli was discharged, Liam was taken to the ER for what they thought were asthma issues. An incidental finding that his liver was lower than normal lead to a chest xray. That revealed an enlarged heart, which lead to an echo, which lead to the diagnosis that their precious 3 1/2 year old son will need a heart transplant. A few days later, Liam had a cardiac MRI to determine more details about his heart. In the recovery room, he went into cardiac arrest. They were able to bring him back and put him on ECMO (heart & lung bypass machine that does the work of those organs allowing Liam's to rest). He was transferred to Cincinnati Children's Hospital a few days later. He is now off ECMO which is wonderful. Things are still very serious for him as the medical teams continue to determine what damage has been done and how long before he will need a transplant.
All this has come as a shock to his parents who just thought their son had asthma complications. I completely remember the overwhelming feelings of shock, disbelief, numbness and grief that we went through when Eli was diagnosed. These parents have been very strong, but need more prayers for them and for Liam. I know they're staying in the nearby Ronald McDonald house and their family & friends in Indy are working on fundraisers for them as they begin this journey they never expected to take. Please keep them in your prayers.
Specific Prayer Requests:
- for us to find out what is causing Eli's fevers
- for the perfect heart to be donated to Caleb
- for Liam to continue to do well and for his family to deal with these life-changing events
- for Eli to do well when his diet is changed
Thank you all for the prayers!
Anyway, back to Eli. He's had these temperature spikes in the late evening since Sunday. One dose of Tylenol had taken care of it, but why was he getting them in the first place? We really didn't worry the first night, but when it kept happening we knew something was up. We still don't know what. On Tuesday (06/25) he had a scheduled check up with the cardiology team in Indy. I say team because it was with several people. Luckily they're all in the same office so it was them who had to take turns seeing Eli, not us rushing around to accommodate them! We saw Dr. Parikh (Eli's main cardiologist in Indy), Dr. Steinberg (cardiologist in charge of the pacemaker), and Sara (surgical nurse practitioner). Overall, the appointment went well. They're happy with how he's doing. He'd even gained a little weight since discharge which made me happy because he doesn't eat as much at home as he did in the hospital. He eats, but he's a busy two year old who has much better things to do than sit down and eat more than three bites at a time. We basically offer him food every 20-30 minutes all day, every day.
Eli had an echo, EKG and his pacemaker was interrogated. That means they hold a device over the area of his body that has the pacer and it feeds info to a machine. They use the machine and that device to check and change settings on the pacemaker as needed. Eli has a dual lead pacemaker which means there's a lead in his atria (top chamber of his heart) and in his ventricle (lower chamber of his heart). Yes, I said chamber for each because Eli's heart is soooo much not like ours that he basically now has one atria instead of two and one ventricle instead of two. Dr. Steinberg has said all along that Eli only required atrial pacing, but since he was in there and you never know what a single ventricle kid will need in the future, he went ahead and placed a dual lead pacer. Now the lead going to the ventricle isn't working. That's really no big deal because Eli wasn't using it anyway, but it is kind of annoying. Dr. Steinberg said we'll just remove it or change it when it's time to change the battery or the atrial lead. Good news is that the important lead, the atrial lead, is working very well. The only thing he changed was Eli's rate. When Eli is awake he's paced at 80 beats per minute, when he's asleep it's 70 beats per minute. If he's really active or upset, he can go higher. The pacer doesn't stop his heart rate from rising because its purpose for Eli is to keep his heart rate up. Prior to the pacer he was in a junctional rhythm which resulted in a very low heart rate for him.
The echo and EKG were good. Eli wasn't thrilled about the echo, but he's so used to these things now that he doesn't actually fight us. He'll scream and reach for us, but he doesn't fight the procedure. Eventually he settles down and doesn't scream, although he doesn't act happy until it's over and he'll put his hands out, shrug a shoulder, cock his head to the side and say "All done?" It's very cute. The echo showed that he does still have some pleural effusion present, but it isn't any worse than before.
When we mentioned the fevers to the cardio team, they weren't too worried. At the time he'd only had two nights of fevers so they said if it continued to get two blood cultures and a couple other blood tests. Getting the tests isn't such a big deal. The part that was going to be tricky was they wanted them while he had the fevers, before any meds were given. He wasn't feverish until the late evening, so that meant we would have to go to the hospital after hours, get out outpatient admission done through the ER (not an ER visit though!), and then go to the lab.
So, that's what we did tonight. The past couple nights he had very low grade temps. Then he had a low grade fever all day today which spiked to 102 this evening. I went to change and gather our blood work order and insurance info. In the meantime he fell asleep on Bryan's lap. Hoping the fever had broken didn't work because I took the temp again and it was the same. So he was woken up as I lifted him off his comfy spot on Daddy's lap and took him to the hospital. We didn't have to wait too long, but from start to finish the whole thing took a little over an hour. Because they needed two blood cultures from him, he had to be stuck twice. Again, he screamed the whole time, but didn't fight it. I don't blame him for screaming. He wasn't feeling well, couldn't have any medicine for it, and it was waaayyy past bedtime in a not so fun place. Luckily, the guy who drew the blood only had to stick him once on each arm. He was very good and I was incredibly grateful for that.
The only other change we're making to Eli's routine is to resume a regular diet (instead of low fat diet) as of Monday July 1. That means instead of this special formula he's getting at night, we'll go back to cans of PediaSure for the nighttime feeds and he'll drink 2% or whole milk instead of skim. We also don't have to watch his diet (any more than a reasonable parent should anyway!). After being on a regular diet for a week, he'll get a chest xray and some blood work. That will show how his body is tolerating the fats well and if it changes the effusion in any negative way.
Tonight's update sounds pretty depressing, but honestly he is doing well. He plays a lot, he's nuts, he runs races (by himself or with us), he plays drums, he doesn't turn blue and he's pretty happy most of the time. He's been a little fussier with these fevers, but who isn't?
While I have your attention, I'd like to ask for prayers for a new heart warrior. Liam was recently diagnosed with cardiomyopathy. His mom was one of our nurses during Eli's seven week stay, and Eli was very comfortable with her (that was a HUGE deal!). The day Eli was discharged, Liam was taken to the ER for what they thought were asthma issues. An incidental finding that his liver was lower than normal lead to a chest xray. That revealed an enlarged heart, which lead to an echo, which lead to the diagnosis that their precious 3 1/2 year old son will need a heart transplant. A few days later, Liam had a cardiac MRI to determine more details about his heart. In the recovery room, he went into cardiac arrest. They were able to bring him back and put him on ECMO (heart & lung bypass machine that does the work of those organs allowing Liam's to rest). He was transferred to Cincinnati Children's Hospital a few days later. He is now off ECMO which is wonderful. Things are still very serious for him as the medical teams continue to determine what damage has been done and how long before he will need a transplant.
All this has come as a shock to his parents who just thought their son had asthma complications. I completely remember the overwhelming feelings of shock, disbelief, numbness and grief that we went through when Eli was diagnosed. These parents have been very strong, but need more prayers for them and for Liam. I know they're staying in the nearby Ronald McDonald house and their family & friends in Indy are working on fundraisers for them as they begin this journey they never expected to take. Please keep them in your prayers.
Specific Prayer Requests:
- for us to find out what is causing Eli's fevers
- for the perfect heart to be donated to Caleb
- for Liam to continue to do well and for his family to deal with these life-changing events
- for Eli to do well when his diet is changed
Thank you all for the prayers!
Tuesday, June 18, 2013
Days 46, 47, & 48 Post Op Fontan (June 2, 3 & 4) AND the First Two Weeks at HOME!!!!
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.
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.
Saturday, June 1, 2013
Days 44 & 45, Post Op Fontan (May 31 & June 1)
Friday and Saturday were much of the same. Our plan for the weekend is to watch Eli's output (from his JP drain) and monitor his activity and oxygen levels. So far, that plan has worked. Zachary was supposed to have a baseball game Friday night, but it was cancelled due to the rain. Bryan asked if he wanted to stay home Friday night or come on up to Indy. Zachary's answer was that he wanted to see Eli (insert "awwws" here).
Eli had played hard all day and was too tired & busy to take a nap. He was definitely fussy as the evening wore on, but that all changed when he saw Daddy & Bubba! After a late supper together and some more play time, Zachary and I left to spend the night at Ashley & Josh's house. It's always nice to get some snuggle time with my Z-boy!
While at Ashley's house, I used the morning hours to do a load of laundry and wash some bottles (much easier at their house than sharing the hospital-provided washer/dryer or doing dishes in the bathroom sink). We didn't get to the hospital until early afternoon so I missed the docs who stopped by in the morning. Bryan said that everyone is impressed with how he's doing and hoping he continues.
Eli's JP drain is draining fluid, especially after he's been up playing. His activity greatly increases the amount of drainage (which is a good thing). His oxygen levels are doing well too. When he's been off his off supplemental oxygen for a while, his sats are ranging anywhere from the upper 80s to the low 90s. Those numbers are higher than they used to be and we're hopeful they'll rise once his JP is finally removed.
Dr. Abraham said Eli will have another chest x-ray on Monday morning. Depending on what that shows, it will determine the discharge plan. If the x-ray shows much fluid, Eli will have to stay and possibly have another chest tube. If there's not much or no fluid present, Eli will be discharged from the hospital. The x-ray findings combined with the amount of fluid his JP drains over the weekend will determine if he goes home with or without the JP drain. We haven't talked specifics, but I'm guessing that if Dr. Abraham decides to pull the JP, Eli may have to stay a day or two to make sure there's no further accumulation. If the JP stays in place, it sounds like Eli may be allowed to come home Monday or Tuesday.
Yes, the end is in sight. We're not getting excited about it yet, we can't emotionally afford to get excited about it yet. What we are excited about is that we have another goal in sight and so far it is attainable. We'll go from there!
Specific Prayer Requests:
- for Eli's chest x-ray to come back without any new fluid accumulation
- that his oxygen levels stay up
- for us to finally get back home together!
- thankful that Eli has been improving and is doing so well
Eli had played hard all day and was too tired & busy to take a nap. He was definitely fussy as the evening wore on, but that all changed when he saw Daddy & Bubba! After a late supper together and some more play time, Zachary and I left to spend the night at Ashley & Josh's house. It's always nice to get some snuggle time with my Z-boy!
While at Ashley's house, I used the morning hours to do a load of laundry and wash some bottles (much easier at their house than sharing the hospital-provided washer/dryer or doing dishes in the bathroom sink). We didn't get to the hospital until early afternoon so I missed the docs who stopped by in the morning. Bryan said that everyone is impressed with how he's doing and hoping he continues.
Eli's JP drain is draining fluid, especially after he's been up playing. His activity greatly increases the amount of drainage (which is a good thing). His oxygen levels are doing well too. When he's been off his off supplemental oxygen for a while, his sats are ranging anywhere from the upper 80s to the low 90s. Those numbers are higher than they used to be and we're hopeful they'll rise once his JP is finally removed.
Dr. Abraham said Eli will have another chest x-ray on Monday morning. Depending on what that shows, it will determine the discharge plan. If the x-ray shows much fluid, Eli will have to stay and possibly have another chest tube. If there's not much or no fluid present, Eli will be discharged from the hospital. The x-ray findings combined with the amount of fluid his JP drains over the weekend will determine if he goes home with or without the JP drain. We haven't talked specifics, but I'm guessing that if Dr. Abraham decides to pull the JP, Eli may have to stay a day or two to make sure there's no further accumulation. If the JP stays in place, it sounds like Eli may be allowed to come home Monday or Tuesday.
Yes, the end is in sight. We're not getting excited about it yet, we can't emotionally afford to get excited about it yet. What we are excited about is that we have another goal in sight and so far it is attainable. We'll go from there!
Specific Prayer Requests:
- for Eli's chest x-ray to come back without any new fluid accumulation
- that his oxygen levels stay up
- for us to finally get back home together!
- thankful that Eli has been improving and is doing so well
Thursday, May 30, 2013
Days 42 & 43, Post Op Fontan (May 29 & 30)
Wednesday, May 29: An easy, laid back kind of day. We had therapy, lots of play time, food, and no x-rays or testing to do. The hope was that the effusion seen on the previous x-ray would dissipate as Eli was more active and that his lung function would fully return since having the diaphragm plication. The plan was to do a chest x-ray in the morning.
Thursday, May 30: Transport came to get us before we were even awake! That's the first time that's happened to us this admission. They let me go brush my teeth & put on shoes as the nurse got Eli ready to go. It was nice to get it over with so early. Once back in the room we ordered breakfast and ate a little. Our nurse was in the room as we were eating and she got a phone call. I heard her say "he's eating now." Immediately I knew Eli needed a chest tube and they were discussing his NPO status. I was right and we let him take a little more milk as I cleared away the food.
His chest x-ray actually looked worse than two days ago. Dr. Abraham wanted to proceed with another chest tube in addition to the JP drain Eli already has in place. It was tentatively set for 2pm in the PICU. I had four hours to distract him from food and drink. We went to the playroom, played baseball outside on the play ground and walked many laps in the hallways. At one point, a volunteer came and sat in the room with him so I could go eat lunch. It's really difficult for me to get away & eat when he's NPO because I don't want to eat in front of him. He was screaming when I left, but she said he settled down quickly and actually fell asleep. When he woke up he was asking for "bot" and "bites" (bottle and food). I have developed several ways to lie to my toddler when we have to withhold his food and drink. The easiest is to tell him we're out and I have to find some. He'll even send me out to the hallway to look for it while he waits. When he thinks I've been gone long enough he'll start yelling and I go back. We try another method of distraction for a while before returning to that one. Yes, I lie to him because I've tried reasoning with him and found it doesn't work. Who knew?
Just before we were supposed to go down to PICU for the chest tube, I posted a prayer request on Facebook letting people know what was going on. Five minutes later our nurse came in the room and said we had a change of plans. Throughout the morning and early afternoon, she had emptied his drainage bulb and "stripped" the tube several times. She had removed over 100cc in the few hours she had been his nurse. Cardiology said they wanted to see if anything was different from the chest x-ray he'd had a few hours prior, so an ultrasound of his chest was ordered. The tech saw NO fluid. Eli is still making and draining fluid, but the large effusion that was seen this morning had drained off!!! ELI DID NOT GET A CHEST TUBE TODAY! :) We came back up to the room and (after making sure he was allowed to eat) he got a bottle. I asked what he wanted to eat and he immediately said "burger." We ordered him a burger & he ate several grapes while we waited for it to arrive.
The plan now is to wait and see. There is some talk of sending him home with the JP drain. He will definitely stay through the weekend and we'll re-evaluate on Monday. He's been in the hospital so long and it's amazing he hasn't gotten sick from being here. The risk of him getting sick while he's here increases the longer he's here. Even with everything Eli's had going on, he's not sick. He's still getting antibiotic therapy while he's here, but Dr. Belcher says he would have stopped that had we already been discharged.
Specific prayer requests:
- for the JP drain to keep draining and no new pockets of fluid to develop
- for Eli to stay healthy and not get sick because of being in the hospital so long
- for us to be home soon!
Thank you for the response to our prayer requests via the blog and/or Facebook. Thank you to the visitors we've had today and yesterday (fellow heart baby Caleb's parents came Wednesday evening and today we had a long-lost family friend, a relative, and a new family friend). They've all helped boost our spirits in their own ways. In no way have I felt that we've been forgotten, but it was a wonderful, visual reminder that we are remembered and loved. Thank you all for that through your visits, comments, and prayers! Today's experience with the vanishing effusion is evidence that prayer works!!!!!
Thursday, May 30: Transport came to get us before we were even awake! That's the first time that's happened to us this admission. They let me go brush my teeth & put on shoes as the nurse got Eli ready to go. It was nice to get it over with so early. Once back in the room we ordered breakfast and ate a little. Our nurse was in the room as we were eating and she got a phone call. I heard her say "he's eating now." Immediately I knew Eli needed a chest tube and they were discussing his NPO status. I was right and we let him take a little more milk as I cleared away the food.
His chest x-ray actually looked worse than two days ago. Dr. Abraham wanted to proceed with another chest tube in addition to the JP drain Eli already has in place. It was tentatively set for 2pm in the PICU. I had four hours to distract him from food and drink. We went to the playroom, played baseball outside on the play ground and walked many laps in the hallways. At one point, a volunteer came and sat in the room with him so I could go eat lunch. It's really difficult for me to get away & eat when he's NPO because I don't want to eat in front of him. He was screaming when I left, but she said he settled down quickly and actually fell asleep. When he woke up he was asking for "bot" and "bites" (bottle and food). I have developed several ways to lie to my toddler when we have to withhold his food and drink. The easiest is to tell him we're out and I have to find some. He'll even send me out to the hallway to look for it while he waits. When he thinks I've been gone long enough he'll start yelling and I go back. We try another method of distraction for a while before returning to that one. Yes, I lie to him because I've tried reasoning with him and found it doesn't work. Who knew?
Just before we were supposed to go down to PICU for the chest tube, I posted a prayer request on Facebook letting people know what was going on. Five minutes later our nurse came in the room and said we had a change of plans. Throughout the morning and early afternoon, she had emptied his drainage bulb and "stripped" the tube several times. She had removed over 100cc in the few hours she had been his nurse. Cardiology said they wanted to see if anything was different from the chest x-ray he'd had a few hours prior, so an ultrasound of his chest was ordered. The tech saw NO fluid. Eli is still making and draining fluid, but the large effusion that was seen this morning had drained off!!! ELI DID NOT GET A CHEST TUBE TODAY! :) We came back up to the room and (after making sure he was allowed to eat) he got a bottle. I asked what he wanted to eat and he immediately said "burger." We ordered him a burger & he ate several grapes while we waited for it to arrive.
The plan now is to wait and see. There is some talk of sending him home with the JP drain. He will definitely stay through the weekend and we'll re-evaluate on Monday. He's been in the hospital so long and it's amazing he hasn't gotten sick from being here. The risk of him getting sick while he's here increases the longer he's here. Even with everything Eli's had going on, he's not sick. He's still getting antibiotic therapy while he's here, but Dr. Belcher says he would have stopped that had we already been discharged.
Specific prayer requests:
- for the JP drain to keep draining and no new pockets of fluid to develop
- for Eli to stay healthy and not get sick because of being in the hospital so long
- for us to be home soon!
Thank you for the response to our prayer requests via the blog and/or Facebook. Thank you to the visitors we've had today and yesterday (fellow heart baby Caleb's parents came Wednesday evening and today we had a long-lost family friend, a relative, and a new family friend). They've all helped boost our spirits in their own ways. In no way have I felt that we've been forgotten, but it was a wonderful, visual reminder that we are remembered and loved. Thank you all for that through your visits, comments, and prayers! Today's experience with the vanishing effusion is evidence that prayer works!!!!!
Tuesday, May 28, 2013
Day 41, Post Op Fontan (May 28)
Today's been a very up & down kind of day. Eli woke and wanted to walk so we played in the play room. While in there he pooped! I took him back to the room and changed him. His breakfast had arrived so we ate together. I didn't push for him to eat because he hadn't been eating much due to the constipation. He asked for and ate two bites of scrambled egg with ham bits and a slice of bacon along with drinking two ounces of juice. That took 30 minutes. A little later he threw up. :( He was resting in bed when therapy came by to see if it was a good time to try some PT. At first I said no but Eli started being silly so we asked him if he wanted to play. He immediately said "Shoosh" (shoes) and started to sit up. We took that as a yes!
The therapist knew he was having belly issues and is only 4 days post op, so she was planning on just following his lead. His lead included playing basketball, bowling, climbing some therapy stairs, pushing a shopping cart, going into the stairwell and climbing a full flight of stairs, coming down said stairs, and pushing a shopping cart (with Pablo inside) the length of the hallway. When he stopped and wanted held, I said I couldn't push him to do more and she was shocked at how much he wanted to do. Before we got back to our room, transport had arrived to take us to radiology for his chest x-ray.
We got back to the room and sat together on the couch. I thought he might fall asleep in my arms, but he said he wanted to walk. We went out to the playground for a long time and enjoyed hiding from each other. Sara (surgical NP) found us out there and checked in on Eli's weekend. She hadn't seen him since before the plication and probably had hopes that his drainage would be less and/or he'd be off the oxygen.
After we got him back to the room he finally took a nap. I slipped out for an hour and came back just as he was waking. It was 2pm by then and I hadn't ordered him a lunch tray because of how his stools and belly had been. He ate some Goldfish crackers and jello. The nurse came in and we gave him a bath. At home, he loves baths. Here, not so much. He screamed at us the whole time but, as usual, as soon as it was over and I was dressing him on the couch as the nurse changed the sheets, he was fine.
Sara & the unit's hospitalist came in to talk while I was lotioning him and getting his clothes on. Eli's chest x-ray actually showed more fluid in his chest. It's above the area that his JP drain is reaching. Because he'd been up and active prior to the chest x-ray, we can't really even entertain the thought that gravity will "pull" it down. Dr. Abraham is aware and will let us know what he wants to do. He was in procedures all day. Sara said he may get with us tonight about what he wants to do or he may sleep on it and we'll know more tomorrow. My suspicion is that they'll have to place another chest tube, but that's me guessing.
I told you the details of our day just so you understand what I meant by "an up & down kind of day." He played a lot and did very well, but he's also still somewhat constipated, threw up because of it, and has a lot of fluid in his chest. I'm mad, annoyed, sad, getting disheartened, etc. I'm not any of those things at anyone, just the situation. I feel like we're doing everything we are supposed to and his body is still not responding right. I get that every case is different. I know the doctors and nurses are almost as frustrated as we are. I'm just getting tired of making lemonade with all the lemons we've had. Thankfully, the things that are happening aren't really going wrong, they're just not going right.
We'll be okay. I'm just having a moment! Please pray for Eli's chest fluid to magically/by the grace of God clear up & never return! Pray for that to lead to increased oxygen saturation levels so we can go home without oxygen! Pray that we all stay strong for each other and get through this long trial. Thank you.
The therapist knew he was having belly issues and is only 4 days post op, so she was planning on just following his lead. His lead included playing basketball, bowling, climbing some therapy stairs, pushing a shopping cart, going into the stairwell and climbing a full flight of stairs, coming down said stairs, and pushing a shopping cart (with Pablo inside) the length of the hallway. When he stopped and wanted held, I said I couldn't push him to do more and she was shocked at how much he wanted to do. Before we got back to our room, transport had arrived to take us to radiology for his chest x-ray.
We got back to the room and sat together on the couch. I thought he might fall asleep in my arms, but he said he wanted to walk. We went out to the playground for a long time and enjoyed hiding from each other. Sara (surgical NP) found us out there and checked in on Eli's weekend. She hadn't seen him since before the plication and probably had hopes that his drainage would be less and/or he'd be off the oxygen.
After we got him back to the room he finally took a nap. I slipped out for an hour and came back just as he was waking. It was 2pm by then and I hadn't ordered him a lunch tray because of how his stools and belly had been. He ate some Goldfish crackers and jello. The nurse came in and we gave him a bath. At home, he loves baths. Here, not so much. He screamed at us the whole time but, as usual, as soon as it was over and I was dressing him on the couch as the nurse changed the sheets, he was fine.
Sara & the unit's hospitalist came in to talk while I was lotioning him and getting his clothes on. Eli's chest x-ray actually showed more fluid in his chest. It's above the area that his JP drain is reaching. Because he'd been up and active prior to the chest x-ray, we can't really even entertain the thought that gravity will "pull" it down. Dr. Abraham is aware and will let us know what he wants to do. He was in procedures all day. Sara said he may get with us tonight about what he wants to do or he may sleep on it and we'll know more tomorrow. My suspicion is that they'll have to place another chest tube, but that's me guessing.
I told you the details of our day just so you understand what I meant by "an up & down kind of day." He played a lot and did very well, but he's also still somewhat constipated, threw up because of it, and has a lot of fluid in his chest. I'm mad, annoyed, sad, getting disheartened, etc. I'm not any of those things at anyone, just the situation. I feel like we're doing everything we are supposed to and his body is still not responding right. I get that every case is different. I know the doctors and nurses are almost as frustrated as we are. I'm just getting tired of making lemonade with all the lemons we've had. Thankfully, the things that are happening aren't really going wrong, they're just not going right.
We'll be okay. I'm just having a moment! Please pray for Eli's chest fluid to magically/by the grace of God clear up & never return! Pray for that to lead to increased oxygen saturation levels so we can go home without oxygen! Pray that we all stay strong for each other and get through this long trial. Thank you.
Days 39 and 40, Post Op Fontan (May 26 and 27)
Back in early April when we were planning Eli's Fontan, I never dreamed my hospital updates would go to 40+ days. We've been here longer than Noah was on the ark (some days it probably smells similar). I think we try to just go day by day and that's a big reason why I haven't lost my mind (much) in here. However, when I think about it, I can't believe we're still here. It's frustrating at times, but we know Eli's not healthy enough to come home yet. Even though he's not healthy enough, the things keeping him here are not super serious either. We've said all along "he's breathing and he's beating, we can deal with the rest." That's still true, but it's surprising to us the variety of problems we've encountered. It's been interesting to say the least!
The night before Eli's diaphragm plication, we were in the play room. There was a little girl playing with her mom and Eli had to check out what she was doing. They "played" together (as well as a two year old and three year old can) and the mother and I started talking. I found out the daughter was in the hospital overnight because she'd had a heart cath that day. I couldn't help but get that excited feeling a heart mom gets when meeting another family who's been through it as well. We're in no way excited that another family has watch their child go through such things, but the fact is that these families are out there and it's nice to meet up and share stories and support when we can. I found out the little girl was going to have her Fontan in the next few weeks. Excitedly I blurted out that Eli was in the hospital because he's had his Fontan. Her next question was "When was it done?" I've never in my life wanted so badly to lie to someone. Why would I want to tell her that my son's surgery, the one she was preparing for with her young daughter, was five weeks ago, we hadn't been home yet, and he was about to make his third visit to the OR in less than twelve hours? I truly debated telling her his Fontan was the previous Monday (as if he'd be out of PICU and playing in the play room in less than four days' time?), but I didn't. I told her the truth. I also told her of his complications and why he was still here. She could see that he was doing well, but understood that he wasn't well enough to go home. She was very gracious and even introduced me to a Facebook support page for heart parents. I still feel bad and almost wish we hadn't met when we did. But I am very glad we met! Please keep her daughter "B" and their family in your prayers through June as she undergoes her Fontan.
As far as Eli updates, there's not a lot to report yet. His bowels are slowly starting to move along, but that's with a couple doses of Miralax and a suppository each day. His belly is still distended but not nearly as big as it was Saturday. His appetite is slowly improving and he's feeling better. The JP drain is still draining fluid from his chest, but we are only on post op day 3 (for that surgery). Yesterday it was 116cc and the previous day was 155 so we are trending in the right direction. He hasn't had a chest x-ray since right after surgery, so I suspect they'll do one in the next day or two. Eli still requires supplemental oxygen (1/2 liter), but again, we're only post op day 3. Overall, he's feeling well, playing better, and starting to eat more.
He did have a moment today to make Momma very proud. Bryan was getting the tire on our fan fixed (it was completely flat & we found out it had a concrete nail in it....that would do it!). While it was me & the boys in our room, one of the priests came by to check on us. Father John has been around here since long before Eli was diagnosed, although this was the first time this admission that we've seen him (we've seen others). He remembered Eli and exclaimed over how big he's gotten and asked questions about his health. A Mickey Mouse cartoon was on and Eli had been sitting up in bed and Zachary was on a stool beside the bed watching it. Father John wanted to pray, so he took Eli's hand and my hand while I held Zachary's with my other hand. Right after he started the prayer, Eli says "Oop-day!" (whoops!). He reached over to the DVD player and pushed pause before turning back to Father John. Father John offered up a very nice, somewhat lengthy prayer specific to the needs of Eli and thanked Him for bringing him this far in such good health. When the prayer was over Eli reached back over to the DVD player and pushed play. Father stood and stared at him for a moment and then turned to me and said "That was no coincidence! He knew what he was doing!" Our nurse walked in right then and Father told her what Eli had done. He stood there amazed for a few moments before saying he'd never seen a little one do that. I think Eli remembers us pausing/muting the tv for family "night-night" prayers at home, but it makes me feel good that he hasn't forgotten. And it's never been his job to mute the tv for prayer time so maybe it is now! And by the way, after Father left, Eli threw three of his toys out of the bed and pulled Zachary's hair. He's not a complete angel ;)
Bryan and Zachary had a good time at the Louisville Bats game. They got to meet up with one of the pitchers, Chad Reineke. He's a really nice guy Bryan has been following for a while and he's become aware of Eli's story. He gave the guys an autographed hat to bring back to Eli and they got some pics with him at the game.
It was a fun weekend for us. Eli got his Daddy & Bubba fix, I got to spend time with all my boys and some one on one time with Zachary. Our dorm room now sports dragon pictures to go with the dinosaur pictures Zachary previously brought. The four of us were together most the time and that's what's important. Hopefully we'll have more (good!) news to update with this week. Thanks for all the prayers and support!
The night before Eli's diaphragm plication, we were in the play room. There was a little girl playing with her mom and Eli had to check out what she was doing. They "played" together (as well as a two year old and three year old can) and the mother and I started talking. I found out the daughter was in the hospital overnight because she'd had a heart cath that day. I couldn't help but get that excited feeling a heart mom gets when meeting another family who's been through it as well. We're in no way excited that another family has watch their child go through such things, but the fact is that these families are out there and it's nice to meet up and share stories and support when we can. I found out the little girl was going to have her Fontan in the next few weeks. Excitedly I blurted out that Eli was in the hospital because he's had his Fontan. Her next question was "When was it done?" I've never in my life wanted so badly to lie to someone. Why would I want to tell her that my son's surgery, the one she was preparing for with her young daughter, was five weeks ago, we hadn't been home yet, and he was about to make his third visit to the OR in less than twelve hours? I truly debated telling her his Fontan was the previous Monday (as if he'd be out of PICU and playing in the play room in less than four days' time?), but I didn't. I told her the truth. I also told her of his complications and why he was still here. She could see that he was doing well, but understood that he wasn't well enough to go home. She was very gracious and even introduced me to a Facebook support page for heart parents. I still feel bad and almost wish we hadn't met when we did. But I am very glad we met! Please keep her daughter "B" and their family in your prayers through June as she undergoes her Fontan.
As far as Eli updates, there's not a lot to report yet. His bowels are slowly starting to move along, but that's with a couple doses of Miralax and a suppository each day. His belly is still distended but not nearly as big as it was Saturday. His appetite is slowly improving and he's feeling better. The JP drain is still draining fluid from his chest, but we are only on post op day 3 (for that surgery). Yesterday it was 116cc and the previous day was 155 so we are trending in the right direction. He hasn't had a chest x-ray since right after surgery, so I suspect they'll do one in the next day or two. Eli still requires supplemental oxygen (1/2 liter), but again, we're only post op day 3. Overall, he's feeling well, playing better, and starting to eat more.
He did have a moment today to make Momma very proud. Bryan was getting the tire on our fan fixed (it was completely flat & we found out it had a concrete nail in it....that would do it!). While it was me & the boys in our room, one of the priests came by to check on us. Father John has been around here since long before Eli was diagnosed, although this was the first time this admission that we've seen him (we've seen others). He remembered Eli and exclaimed over how big he's gotten and asked questions about his health. A Mickey Mouse cartoon was on and Eli had been sitting up in bed and Zachary was on a stool beside the bed watching it. Father John wanted to pray, so he took Eli's hand and my hand while I held Zachary's with my other hand. Right after he started the prayer, Eli says "Oop-day!" (whoops!). He reached over to the DVD player and pushed pause before turning back to Father John. Father John offered up a very nice, somewhat lengthy prayer specific to the needs of Eli and thanked Him for bringing him this far in such good health. When the prayer was over Eli reached back over to the DVD player and pushed play. Father stood and stared at him for a moment and then turned to me and said "That was no coincidence! He knew what he was doing!" Our nurse walked in right then and Father told her what Eli had done. He stood there amazed for a few moments before saying he'd never seen a little one do that. I think Eli remembers us pausing/muting the tv for family "night-night" prayers at home, but it makes me feel good that he hasn't forgotten. And it's never been his job to mute the tv for prayer time so maybe it is now! And by the way, after Father left, Eli threw three of his toys out of the bed and pulled Zachary's hair. He's not a complete angel ;)
Bryan and Zachary had a good time at the Louisville Bats game. They got to meet up with one of the pitchers, Chad Reineke. He's a really nice guy Bryan has been following for a while and he's become aware of Eli's story. He gave the guys an autographed hat to bring back to Eli and they got some pics with him at the game.
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| Zachary with Chad Reineke |
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| Zachary wanted to take a picture of Bryan with Chad Reineke. Pretty good! |
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| Eli with an autographed Memorial Day weekend Louisville Bats hat autographed by Chad Reineke |
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