February 5, 2024

Slow and steady progress was made today. For the most part David was a lot happier. He had his CT scan this morning, so we’re eagerly awaiting the decisions that will be made tomorrow in which we’ll finally see the next stop on this journey rather than blindly following a path, not knowing where it is heading.  

Despite hardly exerting any energy eating yesterday, since most everything has gone through his tube, his weight is down. So today they increased his volume per feed by 5 ml. We’ll see how this goes, at home he spit up more on the higher volumes so he actually gained less weight than if he consumed a lower volume. However, he wasn’t on his reflux medication when we last tried. Also, he does seem to keep things down better with his feeding tube.  

David’s team also put in a referral to be visited by speech to see if they could figure out his feeding aversions. Of course the little turkey displayed no aversion and ate like a little angel for them. They did recommend a larger nipple size that apparently exists but is not sold in stores. We had tried the next size that is in stores without much success at home, but he seemed to like this middle one. I got the pleasure of trying his next feed – unfortunately it was after he was upset for a vital check and he would not calm down. So, of course it seems so far that he only shows off for speech – I’m guessing he likes them and wants them to visit more often. The speech folks are going to think we are all crazy when they never witness his screams. Hopefully the rest of the feeds tonight go better if he starts from a calm state. 

The only other thing today was vascular was called to check his IV and then ended up replacing it in his other arm. Now his arm closest to his feeding tube no longer has an arm board on it, and he gets a big smile when his arm is free and he starts to head toward the tube. I’m definitely keeping a close on him and his free arm this time – I don’t want him to pull another feeding tube on my watch! Although, it wouldn’t be so bad if it happened if he would actually eat orally. I did request that they start giving him all his meds orally again – I’m not really sure why that was stopped and the tube was used for all of it. David was taking all his meds at home orally without issue, so I don’t want him to lose that skill.