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.