Steady as he goes

Henry had a nice, and rather uneventful week. As we waited for our care conference with several doctors and nurses on Friday, we only made some small changes to his dexmedetomidine and continued to condense his feeds. We had requested the conference so that we could all understand, at a high level, what challenges remain for Henry before we can go home. 

Our first step is to see him show consistent weight gain. Because he is still on a fairly high dose of the milrinone to help his heart, we need to know he is at least capable of gaining weight with that much support. Even if he only goes up 10-20 grams (about half an ounce) each day, it will show he is capable of gaining weight. Only then will we begin weaning him from the milrinone. The hope is that his heart will be able to keep up and he will continue to gain weight. He did have an echo this week which showed that while the leakage in his tricuspid valve has improved since before surgery, the function of the right ventricle has not yet improved, and may be slightly worse. It is not terrible, and they have seen kids be successful with the same amount of disfunction, but it is something we will be watching closely as he is weaned from the milrinone.

After failing to come off of the dex last weekend, we have weaned him much more slowly, by only .01 or .02 micrograms (per kilo per hour) each day. At our current rate, we hope to be off of the dex by then end of this week. As his does is lowered each day, Henry gets pretty cranky for a few hours in the afternoon, but he does get some oxycodone to help him through it. He is usually less fidgety by night and is able to make it through the night without additional drugs. at other times when he is fussy, he can still be consoled the old fashioned way - he enjoys being held!

As far as feeds go, we have worked down so the amount he was getting over three hours (about three ounces) is ran over an hour. Henry seems to be tolerating it well, and we have just begun working with a bottle more regularly. It seems he got rather lazy during the six-plus weeks when he was getting continuous tube feeds, but we think he still knows the mechanics. The bolus feeds will help as the more time there is between feeds, the more he will feel hungry.

So while we wait for Henry to grow and be weaned off of the dex, if his next echo mid-week looks good, we will start to wean the milrinone. Optimistically, the doctors think we night be coming home within 4-6 weeks. Again, that is a best-case scenario, but we are hopeful that we are all home sometime in June.