Delay

This has been a long and difficult week, and while we still have a few more long days ahead of us, Henry seems to be doing well.

Henry threw us a curveball last week with more blood in his stools. This was pretty devastating to us, as it delayed our homecoming. What made it even more frustrating is that we had seen some blood in his diapers the week before his surgery, and we asked several times if all the nurses and doctors were OK with that. At the time, the consensus seemed to be that the GI tests done ahead of his G-tube surgery, along with the surgery itself, could have caused some irritation and bleeding. Since then, however, we have not been able to get a straight answer - no one seems to know, or be willing to commit to a reason.

We have spent the past week trying to rebuild our confidence in the staff here. The fact that our concerns turned out to be valid after they were repeatedly brushed off made it difficult to trust what we hear from the doctors. It has been a struggle to regain that trust though, since no one can really tell us anything. We had one nurse tell us on Saturday that of her dozen years at Children's, she has never seen pneumatosis in a heart baby, post-Glenn - and Henry was the first of two babies with this scenario this week. We have been reassured by the team that they do not believe it is due to decreasing heart function. Their reasoning behind this is that his echocardiogram on Monday showed no change, and his BNP number remained low. 

As far as Henry goes, he has not eaten since Monday night/Tuesday early morning, and is rather upset about it. He does appear to be more comfortable now that at this time last week. Even though he is hungry, the pain from his surgery and his vaccines seems to have gone down. We did also backtrack a step this week on his methadone wean to try and help him be comfortable. We started on antibiotics the morning we transferred back to the PICU. He will continue on the antibiotics and no feeds for a full week. Henry will have another ultrasound to check for pneumatosis on Monday. This was how it was originally found last week, as all of his abdominal X-rays have been negative. If the ultrasound is negative, and the echo on Tuesday looks OK, then we will resume feeds on Tuesday.

It's so incredibly hard to listen to Henry's hungry cries and not being able to do anything for him. Our hope is that this was truly an artifact of his G-tube surgery, and we can get back on track this week for homecoming in June.

Two steps forward and three back

I write this while holding my dear Henry on my chest. Overnight he continued to have blood in his stools and the ultrasound this morning confirmed air, a sign of pneumatosis. We are waiting on antibiotics and will be heading down to the PICU.

Please continue to keep us in your thoughts and prayers. This has been incredibly hard to deal with as all we wanted was for Henry to finally come home.

Patience

This long weekend has been an anxious one for us. Henry has been very uncomfortable since his G-tube surgery. He was irritable Saturday after having to wait over 37 hours between meals, and his first one was only a half of feed at that. He downed the first bottle we gave him as well as his second one. Once we got to full 100 ml feeds, he started to only take half, which was about what he had been doing before surgery.

On Sunday the doctors gave the okay to give Henry his four month vaccinations. Shortly before we gave them, he started becoming very upset. He was crying - screaming at times - and it took us a long time to console him. We gave him some oxycodone and he handled his shots very well. We left to visit family, only to come back to an upset baby.

We took turns holding Henry until midnight. He had had some blood in his diaper, which we were warned may happen since he did have stomach surgery. Doctors at night seemed okay with it, and ordered a KUB (abdominal X-ray) to clear out pneumotosis. He didn't have any more blood in his stools the rest of the night and most of Monday.

On Monday, Henry was finally moved back up to the transitional floor. This was the first time he has been out of the PICU since the first week of February. Shortly after arriving, he had another diaper with flecks of blood in it. We saw several doctors coming in and out and were asked lots of questions. We reiterated the fact that we were warned this would happen. We even specifically asked about the blood in the diapers he had last week during the Care Conference on Friday, and no one was concerned. The doctors for now have decided to "do nothing". 

We are anxious to be home but so worried about having a setback. In the four days from Friday through Monday, Henry has had abdominal surgery, gone a day and a half without eating, started getting food through a hole in is stomach, received four vaccines in his two little legs, and had his daily amount of methadone cut in half. We have tried hard to remind ourselves that this is enough to make anyone upset, and on top of it all, he's not even five months old - for all we know, he could be starting to cut teeth!! We are still hopeful to bring Henry home this weekend, but always  appreciate your continued thoughts and prayers. 

Picking Up Speed

Henry has had a pretty rough Friday, but we hope that the cause has brought us closer to home. Henry had a G-tube put in this morning. The surgery to place it took probably 20 minutes, but it has made for a long day. Henry's feeds stopped at 9pm last night, and they want him to wait 24 hours after the surgery before feeds resume. The hunger, combined with pain from the surgery itself has made him quite cranky - but who wouldn't be!

For us, making the decision to get a G-tube was quite a rollercoaster this past week. It came out of a conversation we had with the team from the recovery floor last weekend. We were surprised and frustrated to learn that the PICU team felt Henry was doing so well (good!) that he was ready to move upstairs (not good!) Based on our experiences back in January, we had a lot of concerns about Henry going up to a unit that was unfamiliar with him, and that we felt couldn't handle making decisions if his condition changed. At the time, Henry was only one day off of oxygen and less than one week off of his milrinone. The PICU might have felt he was stable, but Paige and I were still worried.

Our main frustration that we conveyed to the floor team was that if Henry is stable enough to go upstairs, why not just send us home? And if he wasn't ready to go home, what was keeping him here. We had a long conversation with them on Saturday, during which the question of a G-tube was raised. Paige and I had a deep conversation about this. We had known for a long time that a G-tube was a possibility. Obviously the ideal would be to not need it - for Henry to take his full feeds by mouth, along with all of his meds. Henry was still averaging a little under half of his feeds by bottle, and we had not even started trying to give him his meds orally. The hospital was willing to give him time to learn, but there's no telling how long it might take him. Selfishly, we worried about the stress of going to the floor for a few weeks, only to come back down to the PICU so he could get a G-tube installed. Ultimately, we decided that if feeding was the only thing keeping him here, we would get the G-tube so we could take him home. When the floor team returned on Sunday, they told us the only part of Henry's overall condition keeping him in the hospital was his feeding. The decision was made.

That is when our rollercoaster ride began. The climbs came as we realized we were getting one big step closer to home. Then there were a number of loops caused by issues in communication. First, we were told there would be a study done to make sure there was no constriction through his GI tract, caused by his earlier bouts with NEC. Then the second half of the study was going to be delayed, either because he hadn't passed all of the dye, or because of concerns about his bowels - or because he had gas. As the timing of the study kept changing, so did our surgery date - first, Friday; then, Thursday, and not until after Memorial Day if it was delayed; and finally, Friday. And then came the drop. When Paige called in to check on Henry Thursday morning, the nurse nonchalantly mentioned that he had several bloody diapers overnight. Apparently, she was too busy to call us, and none of the doctors were concerned. This brought Paige back up a day early, and she spent the whole day trying to figure out how many bloody diapers he actually had, if this truly was a concern or not, and whether this would have any impact on his surgery. By the end of the day Thursday, the answers were: unknown, apparently not, and no, the surgery was on for first thing Friday.

So now, Henry has his G-tube in, and we will resume his feeds in the morning. Over the next week - assuming all is well with Henry - we will learn how to feed him, give him his meds through, and care for the G-tube. We will also get any other training the staff feels we still need to care for him, and show that we can take care of him on our own. The hope now - still cautious, but more realistic than merely optimistic at this point - is that we will bring Henry home next weekend. The car is hurtling along now, with the station in sight!

Sunny Days

Henry has had a great week! He has been off of his milrinone since last Monday afternoon, and he is looking better than ever. His BNP is staying low, and his echos show some slight improvement. This is likely the positive effect we were hoping the digoxin to have once it got into his system.


Over the past week we have also begun weaning him from his methadone. The doctors had indicated that this might be a long process, but he is already down to one-third of the level he was getting. If he keeps acting well, we hope to have him off of it by next next weekend!

More than the heart meds, it is likely the weaning of the methadone that has had the best effect on Henry. Over the past week, it is like he has woken up again. He has much more time where he is awake and alert, looking at people and smiling and laughing. It has been so great to see him again!

We continue to work on his feeds, and he is still only taking about half of his feeds by bottle. We can tell he is getting hungrier, as he typically wakes up and starts crying about a half hour before a feed, but he just loses interest after a while. We also get the impression he is getting hungry, as he has figured out how to throw his thumb into his mouth!

 For the first time in his life, we were able to take Henry outside. We visited a little garden attached to the ICU this afternoon, which Henry loved - even if he slept through it! Given we were at though, we are excited with how far we have come, and we are hopeful that the remaining road home is growing shorter.

Happy 1st Mother's Day

Thank you, Paige, for being a kind, beautiful and strong mother for our son. Henry and I are so lucky to have you in our lives.

Happy Mother's Day!

Two Steps Forward...

Well, the two weeks since our last update have been long and eventful, with a few victories but also a few concerns and worries. Henry is still doing OK, and is probably a little further along than he was, overall.

In the plus column, Henry has been fully off of his IV sedative, the dexmedetomidine, since the end of April! There were some rough spells during that last week on dex, but he has adjusted well since then. He is also getting oxycodone for pain less often now. Today, we even began to wean him off of his methadone. This will be a long process - possibly taking months - but is something we can continue weaning him from after we return home.

Henry has also been tolerating his feeds quite well. He dipped to about 4.8 kg (10 lb 9 oz) right after his surgery, but since then is up to about 5.4 kg (11 lb  14 oz)! We continue to work on his oral feeds, as he is still reliant on the feeding tube. He is now consistently taking about 15 - 20 ml (1/2 - 1 oz) each feed, which is a nice start. When we restarted giving him bottles, it had been over six weeks since he had been allowed to eat, so this is not an unexpected challenge. He still knows what to do, we just have a ways to go to get him to take his full 95 ml (3+ oz) feeds every three hours.

[And, last Sunday, we completed the "Run for Little Hearts" 5k - Jason's first! Thanks to everyone who came out, ran virtually, or donated to help raise awareness of CHDs!]

But for each couple of steps forward, we have a small step back. Last weekend, a couple of nurses (who have never had Henry before) were worried about his breathing. When we showed up last Saturday, Henry had on a nasal cannula. The doctors didn't seem concerned, saying they would keep an eye on him, and took Henry off oxygen the next day. Wednesday night, Henry had more problems with his breathing and his O2 levels were dropping. So, Henry went back on oxygen and is still wearing the cannula. He has been put on sildenafil to help promote the flow of oxygen in his lungs. If that helps through the weekend, we hope to come off of the oxygen on Monday. We're not really sure why his oxygen levels have been low at times. This could still be his body adapting to the new physiology after his Glenn. It could be that he does have a little bit of a "floppy airway" - he does breath a little squeekly at times - and sounds like his father when he sleeps! It could also be his heart.

There is still concern on his heart function. It currently isn't that great, even for a baby with hypoplastic left heart syndrome. Our primary cardiologist went over several of his echos with us, going all the way back to January. It helped us to see that the muscle squeeze is just not as vigorous as it has been in the past. Only time will tell if this function will improve. Some kids with similar function concerns need to be on ventilators, others are running around at home, and right now Henry is somewhere in between. The doctors have added a new medicine (digoxin) to help with the squeeze of his heart, but it takes about two weeks to see its effectiveness. The plus side is his BNP number (an indicator of heart failure) has been stable and very low the last few times it's been checked. We will be getting our weekly echo on Sunday, and will make a decision Monday on whether or not he is ready to come off of the milrinone.

The road goes ever onward, and we keep moving down it. Slow and steady is still progressing. If this oxygen issue is just a small blip, then we are still looking toward a June homecoming.