Archive for August, 2016

Noah’s heart surgery

Thursday, August 25th, 2016
Picture from 7/11 - the first one I felt comfortable sharing

Picture from 7/11 – the first one I felt comfortable sharing

Picture from July 15th with the Husky on his head - first real smile in a while!

Picture from July 15th with the Husky on his head – first real smile in a while!

Picture from July 18th - Hannah and Micah and friends with Toby and Noah and came to build with them.  They visited every couple of days - so kind!

Picture from July 18th – Hannah and Micah and friends with Toby and Noah and came to build with them. They visited every couple of days – so kind!

Picture from July 27 as we were all just killing time and hoping the effusion would stop so he could get his last chest tube out!

Picture from July 27 as we were all just killing time and hoping the effusion would stop so he could get his last chest tube out!

Pic from July 28th - we are sick of the hospital, but so appreciated the support!

Pic from July 28th – we are sick of the hospital, but so appreciated the support!

Picture from Aug 1st - the first time Noah was free of lines since he got to the hospital on July 7th!!

Picture from Aug 1st – the first time Noah was free of lines since he got to the hospital on July 7th!!

Toby and Noah heading out for the first day of school - Noah made it!

Toby and Noah heading out for the first day of school – Noah made it!

Hi, all, I confess it was very hard to keep up with my blog while we were living in the hospital. I updated my Facebook the whole time, but I’ve heard from some people who are checking here, and thought I’d just put all those Facebook posts in one place – don’t know why I didn’t think of that before. So my Facebook posts are here and I added extra and new notes in italics. It’s super long, but then, so was the hospital stay!! If you’re brave enough to read a book, dive in!

7/7/16, 10:02 am
Noah’s been in surgery since a bit before 8. It takes a long time to get all the lines in, so the main surgery started around 9:30. The first lyric we heard when we turned the car on this morning to go to the hospital was “You can mend a heart that’s frail and torn.” Isn’t God good?!

I was so terrified. It is so hard to take your kid who looks pretty good and subject them to that, even though you know intellectually it’s for their good. He was so brave. Can you imagine how sweet it was to turn on the radio at 5:30 in the morning knowing what you were facing and hear that lyric?! Noah hated the meds they’d given him to relax him for the past surgeries, so he actually went in awake. I was able to come with him into the OR, but I had to leave him awake. It’s a very intimidating room – I can’t believe he did that, but he did, and he even told me he was fine and would see me later. “You have the hard part,” he said, “I get to sleep through it.” Wow.

4:11pm
Noah is out and recovering! We are back in the ICU with him. They said everything went really well, and his O2’s are already reading 95-98! He is in a pretty good amount of pain and I am very struck by the amount of monitoring on him, so we’d appreciate your continued prayers, but I am praising God that we are on this side of the surgery! Thank you all for praying and for your support! We really have been so touched. I will update again when we get out of ICU or if there’s something significant to say. πŸ™‚

The ICU was impressive and sunny and much happier than I was expecting. Noah looked very scary. He had no color and so many tubes and lines – O2 monitors on his finger and head, oxygen in his nose, three chest tubes, 2 sets of lines through his chest to his heart in case they needed to shock him, 5 “stickers” and a box for the heart monitor, about a 12″ incision, arterial lines in his neck and wrist, IVs in both arms, catheter… more that I’m not remembering. But his monitor was reading 98 percent O2 sats when we came in and I never thought I’d see that number – his average before surgery was about 75. We have a dedicated nurse just for us, and have multiple dedicated doctors on this unit, and we feel as safe as we can feel. He was not awake at first, and then when he was I wished he wasn’t – he was in a lot of pain and wanted a drink so badly that he couldn’t have. Just so hard to see your kid like that, it makes me teary. One interesting thing – he woke up in English. We had an interpreter standing by in case he needed that with all the drugs in his system, but he woke up asking for water in English. Just amazing.

July 8, 1:41pm
Unbelievable (except for all the prayer!) but we have been released from the ICU! We’ve been in the step down unit for about an hour. He’s doing well medically, although struggling with pain and nausea quite a bit. Please pray that he can eat so they can see that his system is working and we might be able to get a couple of these chest tubes out – they are very uncomfortable. We’re going to try walking a few steps later tonight. Again, we just continue to thank you all for praying – it has totally touched our hearts!

Noah’s biggest problem at the beginning was balancing pain and sickness. The meds they gave him for pain made him ill and he was throwing up frequently which is obviously extremely painful and started the cycle again. They worked hard to find a balance for us, and once we could get him off the heaviest narcotics, things started looking up. But the first 3 days were extremely tough, and the first 5 were much harder than anything I’d done or expected to have to do with my kids.

July 9th, 5:59pm
Update for the day: Noah had a pretty good day and is definitely less sick – thank you for praying! He was even able to eat a few bites of real food for dinner which is a huge improvement. He’s still having a good bit of pain, and there are some concerns now about his lungs because breathing deeply is painful (moves his sternum) and there were some air pockets so they don’t want to pull his chest tubes as that could cause his lungs to collapse. Please pray with us for his breathing and comfort, but he’s a lot more like himself today and even watched a movie and talked to me during lunch, so it’s good to see our little guy coming back to himself some! Again, thank you so much for praying with us!

One thing that was really concerning Nathan and I was that after the surgery, Noah seemed to be in shock. Even after the anesthesia wore off and the heaviest drugs were out of his system, he would just stare at us and not respond when we talked to him, or if we asked him a question three or more times, we might get a one word answer. This is from a boy who never stops talking. I was getting quite worried – you think about oxygen deprivation from the bypass machine and things like that. But a few other adoptive heart moms (I’m connected on a Facebook page with them) told me this was pretty normal, especially since our kids have had trauma in the past, and this day, he started talking to us a little more and I was just relieved to see a bit of his personality re-emerge. It took about 5-6 days for me to feel like we really had our Noah back.

July 11th, 10:38am
This is a kiddo who’s starting to get his mojo back. πŸ™‚ Down to one chest tube, got another one of his IVs out today, got a decent night’s sleep, and everything’s looking just a little bit brighter.

This was the first picture I felt I could post of Noah without disrespecting what he might want out there publicly. He had gotten most of his lines out – we were down to two IVs, one chest tube, heart telemetry, and an O2 on his finger, and he was feeling like he might survive. We were still worried about his lungs – hard to explain all the technical stuff, but they were worried about pneumonia and his lungs collapsing, and Noah had to do breathing treatments that really hurt him – it was tough, tough, tough.

July 12th, 12:12pm
Some good news and some bad news today. Good news is that Noah’s lungs look great now, so that is a blessing. Bad news is that his lymph system is freaking out a bit. So, this is not scary yet, but it is annoying because it means the chest tube is staying for quite some time, Noah’s on a special diet now, and we’re definitely in the hospital longer. The doctors tell us it’s unpredictable, but it could last a long time or turn off “like a switch” so I’m asking for prayer for that! We do not want to be here for weeks! Thanks!

So, apparently the procedure Noah had is done right on top of the main branch of the lymph system and this complication is pretty common after this procedure, but it doesn’t make it any easier to deal with it. He had what is called a chylothorax or chylous pleural effusion. It just means that his lymph system was leaking fat and fluid into his chest cavity. Again, this can collapse the lungs, so we needed his last chest tube to stay in until it stopped. They put him on an almost fat-free diet, the idea being that if the lymph system has less fat to process, it will be less stressed and heal faster, etc. So now, my kid who really misses Chinese food and doesn’t particularly like American food is on fat-free, diet, American, hospital food. You can imagine how that went over. We were told this would extend our stay, but sometimes it’s for a week or two and sometimes it can literally be months. That not knowing is hard to live with, especially with a kid who wants to know the plan. He just got a home, and he really wanted to go back to it.

July 15th, 2:08pm
Couldn’t really help but post this one – someone brought him a Husky, and somehow it got on his head! That kid is cute. πŸ™‚ Not a lot to report except that things, while slow, are going in the right direction and so it’s just a waiting game. Hoping to have this chest tube out in a couple of days and then a couple more days to make sure his body adjusts to that and then we’ll see. But the little man is up and playing a lot more and just generally so much more comfortable! And the coffee’s not half bad, so I’m surviving too. πŸ™‚

I was pretty optimistic at this point because his chest tube output numbers were falling. That stalled later, but on this day, one week out, Noah was starting to feel decent and wanted to play games and watch movies and we all just thought we’d be there another 5-7 days and it would be good.

July 17th, 1:05pm
Well, it’s day 11, and sadly, we are officially stalled over here. Noah has not had much progress with his lymph system, although it’s not getting worse either. We’ve also had a few concerning/confusing fevers and arrythmias, so it looks like we will be in the hospital for a while. He’s still doing well, and the doctors are not concerned, but he’s definitely getting a little sad about still being here and he’s bored. If you’d like to send Noah a card, you can do that through the hospital website and they will print and deliver it to him -http://www.nationwidechildrens.org/netapps/greetingcard… His unit is H4A. And please keep praying with us!

Noah kept having a low fever, just over 100, every 15 hours or so. Sometimes after trauma, kid’s bodies react strangely, and we thought that was all it was (and still do) but they are very on top of fevers because of the risk of infection. These were just low enough to not count apparently, and we learned to be thankful because the one time it got high enough we had people all over us, a very traumatic blood draw, and massive testing which all turned out fine but we didn’t want to do that again!

July 18th, 7:04pm
Just heard that upon review, Noah’s hospital is giving us an unlimited length-of-stay parking pass – this cannot be a good sign. Sigh. On the upside, though, friends and time in the hospital means you can make amazing Lego creations!

At this point, we are just waiting for the stupid chylous effusion to resolve. There’s really not much to report. We are living here, the other kids visit everyday, we’ve played a million games, done puzzles and built lots of Legos. Just hanging around waiting for the chest tube to come out!

July 21st, 12:35pm
Again, we come to you with some good and some bad news about Noah’s recovery and just appreciate you keeping him in your prayers! We’re on Day 15 after his open heart surgery. The good news is that his heart looks great, he’s feeling really good, off all pain meds, and just his chest tube is a little uncomfortable. The bad news is that he’s not progressing much toward getting this tube out, and we’ve heard some kids can be in here for a really long time with the complication Noah has with his lymph system. They have two potential things to try, one that is not so bad and will likely start tomorrow, and one that has a better chance of working but is really hard and potentially extremely difficult for him considering his history. Both treatments last a week or two and aren’t usually concurrent. If neither of those works, we may be looking at another surgery. Please pray for wisdom for the doctors, for Noah’s body to heal, and for patience as Noah really wants to go home now. Also, please pray for a little almost-three-year-old guy named Walker – we’ve gotten to know his family as we’ve been here, and he’s recovering from a heart transplant. They’ve been here 100 days today on this trip, and it sure puts things in perspective. Thanks!

This was super tough. We didn’t know how much to share because we didn’t know what was going to happen. The standard treatment for a chylous effusion that is not clearing is to take away all food and drink and just feed intravenously for two weeks. Since your stomach is still empty, though, you will be hungry. This sounded terrible. We don’t know a lot of Noah’s history but one thing I do know – you don’t take food away from an orphan. So often food is a major point of trauma for these kids with their histories, and I didn’t want to risk it, not to mention that that sounds really terrible just to be hungry for two weeks! The other potential treatment involved a new medication that had to be given through a pic line which is a hard procedure and also has a greater chance of infection and really didn’t have a lot of info on whether it was helpful or not, so we might just waste two weeks in the hospital trying that. And if neither of those worked, the only other option was to wait it out no matter how long it took, or do another smaller heart surgery which would undo some of what we had just done (again, very complicated) and see if that would help. We told them taking away food was sort of a last resort for us. All the doctors came back that afternoon and said that given his history and age, they wanted to take a day to research all possible options one more time. We continued to pray. The next day they told us they wanted to give him the weekend to see if anything changed on its own, and they scheduled him for his pic line on Monday.

Walker, by the way, was the sweetest little guy, and I got to know his mom pretty well. He was rejecting his new heart at this point and they had to kill his immune system to try to get it to reset. It was a scary and hard time for them, but I’m happy to say that it did work, and he was released from the hospital Aug. 17. He still has a long road ahead of him, but hopefully he’s through the hardest stuff on this go-round.

July 25th
Monday morning. We were scheduled for our pic line today, but after being completely stalled for two weeks, an amazing thing happened over the weekend – his numbers started to drop. I was actually afraid to post this, so I didn’t – we were afraid to hope. I did find his doctor this morning, though, and asked if they were willing to push the pic line to the next day just to see if the trend continued. It did – slowly, but it did. So they agreed to give us a few more days to see if it was just resolving on its own. Please, Lord!!

July 27th, 2:26pm
This is what happens when you’ve been in the hospital this long – the whole family moves in. πŸ™‚ Rinnah’s playing Catan with Noah, Toby’s reading, and Rachel’s on the bed. Thank you so much for praying for us! I’ve been hesitant to post because things have been really hard to predict, but it finally seems to have turned in a good direction! We were set to get a pic line and start a new med this Monday, but over the weekend, he finally made some progress so they decided to put that on hold to see if it was a trend. So far, it looks like it is, and we are so happy to be in a better place! Still not sure how long it will take to resolve, but it is looking much more hopeful this week than it was, and we are thankful!

By this time, each day Noah’s numbers fell a little. They told us it had to be under 50ml from the chest tube to remove it, but since it was taking so long, our surgeon said he would be more comfortable getting under 40. No one wanted to have to put it back (us first in line on that statement!!) and if there’s too much fluid, it will collapse the lung. So we were waiting, and each day they just pushed the pic line back one more day.

July 28th, 11:36pm
Thanks to all the sweet people who have sent Noah cards – they have really brightened up our room! And Sweet Dreams for Kids sent Noah and his sibs PJs today – thank you! Our numbers are really good today and they even started talking through our exit plan, which is amazing. Noah had one pretty scary episode today with his breathing that may or may not set us back a bit (love for your continued prayers for his lungs/ air pockets, etc) so we are back on suction, but hoping that will resolve by morning. All things considered, we are way ahead of where we thought we’d be last week (this is so unpredictable, and sometimes goes on for months!), and we are pretty hopeful that we may get home early next week – we will see what God does!

This was a scary afternoon, and hard emotionally since they’d been talking about Noah going home in a few days just that morning. After lunch, Noah started crying and suddenly he was holding and hitting the left side of his chest and couldn’t breathe and I thought he was having a heart attack. We had a pretty peaceful stay overall, but you realize you’re on a heart floor at that moment – I yelled out the door (we were next to the nurses’ station) and had about 9 people in our room instantly with crash carts and the whole nine yards. It was very scary. When Noah started having pain and trouble breathing and then saw all the people running for him, I think he actually had a panic attack too, so it made it much worse. In the end, they decided it was actually pain from his scar and chest muscles that simulated a heart attack (the cardiologist on the floor said they see that with some frequency after surgery while everything is healing), and even after we got home we’ve seen that if he cries or laughs too hard, he will have a hard time breathing. It’s getting better over time, and they have tested everything and assure us it’s just the healing process. He knows it will get better now too, so he doesn’t panic in the same way which helps, but man, I don’t really want to do that ever again.

After that, he had to have had a bunch of tests including x-rays and they found he had air pockets in his lungs again. Having the chest tube in so long was starting to cause it’s own problems by then, but taking it out wasn’t an option yet, so he was put back on suction and that means he was tied to the bed again. Sigh. He was discouraged but he’s really been such a trooper.

July 29th
So, by now, we were having a little issue with our doctors who were starting to disagree. There’s a whole hierarchy of who makes decisions, etc, and there’s our surgeon and the floor cardiologist and our cardiologist and the cardiology fellow and on and on. We felt strongly that we wanted to be conservative because the last thing I wanted was to pull that chest tube too soon and have to put it back (that process is exactly as bad as it sounds, yes. It’s a large tube that they insert directly INTO YOUR CHEST. Not fun.). We’d had doctors who were very much in tune with this, and our surgeon was all about being conservative, but we’d gotten one new doctor who unfortunately out-ranked all the others on the floor who clearly wanted to pull the tube and get us out of there. We were close, but all of Noah’s numbers were still borderline. Our surgeon had the final say, but we usually only saw him for about 2 minutes at the end of the day after his surgeries, and the team was making their decisions at rounds that morning. I did not want them to decide to pull the tube that day before we saw our surgeon, and I really didn’t want it to be done over the weekend with none of our regular team there. I started praying about this.

About 10 minutes later, our surgeon came in. He had never been there before 4pm in our entire stay, but here he was at 10am. He checked Noah, and I actually heard rounds coming down the hall and heard that doctor say, “We just need to get that tube out today, etc” and they walked up as our surgeon was walking out and he just said, so casually, “Yes, no one touches that tube until Monday. I want to be in the building when it’s pulled, and I want his numbers lower. Thank you!” and walked away. It was actually pretty funny because rounds was about 18 people that day and they were totally silent until someone said at the back, “Well, I guess that’s the plan then.”

That’s hard to put into words, and maybe hard to picture, but it was just such a direct answer to prayer for us! We wanted Noah to come home, but more than that we wanted him safe, and we just weren’t comfortable yet. I was so happy I didn’t have to fight with the doc!!

Aug 1st, 7:01pm
See that?! That’s a kid who is NOT ATTACHED TO ANYTHING!!! Yea! Chest tube out, telemetry off, O2 off, woot! And that’s not the best news – we had awesome numbers over the weekend, and if our x-rays today and tomorrow show that the air pockets have resolved with the chest tube out, they may, drum roll please, release us TOMORROW! Can hardly believe it! One week ago they were telling us to get ready for the long haul and we were hoping to make the opening of school with some really tough treatments. We didn’t have to do any of that! Now, just pray it doesn’t start again (that can happen) but whatever happens, God is good all the time, and we are thrilled that it looks like we are going HOME!!

Well, our prayers were answered over the weekend, and Noah’s numbers continued to drop steadily to the point that we knew it was as safe as we were going to get to remove that chest tube. It was going to take a while to heal because it had been there so long, but he was so thrilled!! And because we live locally, they said they would probably send us home the next day and let us come back for x-rays since that was what they were worried about – they needed to see if fluid was accumulating around his lungs. We were more than happy to bring him back as much as they wanted if it got us home!

Aug 2nd, 10:20pm
And yes, we are home! The boys are already playing, and the dogs had a field day with everyone in the house at once! And my lovely friend and sister Linda brought us dinner – I almost cried I was so happy not to figure that out. Passed out on the couch so hard I forgot where I was! They told us they let us go because we are local – we can bring him back for x-rays this week and next. Otherwise they would have kept us until Friday. But things continue to look good and we’re so extremely grateful to have the whole family together in one house again! Noah was so excited to get to sleep in his own bed! We offered to wake him up every two hours and squeeze his arm and take his temp and make beeping sounds at him, but oddly, he refused. πŸ™‚

It was a super long day, but in the end we were allowed to go home! Noah was so excited to see his bed, and we were just thrilled to all be in the same house again! Nathan and I took turns sleeping at the hospital, so it was just nice to see him again for more than a high five as we switched cars! 27 days later, we were home.

August 22nd, 7:45pm
Awesome cardiology follow-up for Noah today! X-ray was totally clear, no evidence of pleural effusion, heart sounded good, and his scars are healing beautifully. What does this mean, you ask? It means: NO more special diet (which he hated), NO more x-rays for 3 months (unless we notice something), NO more restrictions on him physically, and, drum roll, yes, that boy is allowed to go swimming! So basically, we just treat him like a normal kid from now on unless something happens that tells us to change that. Yea!

Noah went for x-rays every couple days, then twice a week, then more, and each time the amount of fluid in his chest was less. Finally on 8/22 they gave us the all-clear. He was able to start school as planned on August 17th, and now they tell us we don’t have to go back for three months. He was very weak after being in the hospital so long, but every day he’s stronger, and he’s starting to realize what a huge difference his heart surgery is going to make in his life. I asked him if he noticed the other day and he said, “I’m never blue now (he would turn blue with exertion before). If I run, I can run and keep running!” Praise God!