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!

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. 

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