What. A. Day. I woke at 4 am- I know you are surprised I was able to drag myself out of the ultra-luxurious
bed vinyl couch I’ve been sleeping on for the past week. My thought was I’d take a quick shower before His Royal Highness woke up for a fun-filled itinerary of Bloodwork! NG Tube insertion! Gastric Emptying Study! Ole!
How is it that kids who are dead asleep sense when their mommies are attempting to spend 3 minutes doing something for themselves and then decide that it is URGENT that they be picked up NOW? Well, I did shower with a soundtrack of screams and then picked him up, and then really, he didn’t want to be put down the rest of the day.
He was miserable. No food or drink allowed due to the gastric emptying test that was supposed to be this morning- it didn’t end up happening until 1:00. On top of that, that mean lady with the needle came and stuck him- again- to draw blood for a thyroid test.
Then came the NG tube insertion. The original plan was to put the tube in after the gastric test, but in order to do the test, he had to drink 2 ounces of the solution, and they were skeptical if he would do that. Do down the nose the tube went. It wasn’t as traumatic as I thought it would be- G screamed through it all, but he’d been screaming all morning anyway. Since it was put in, the tube hasn’t really seemed to bother him at all. We did have to do an X-ray to make sure it went in his tummy and not his lung (um, yes, please make sure) and yep, everything looked good.
The gastric emptying test basically tests how fast his stomach is emptying after food is put in. Grayson hadn’t slept all day and had been crying nonstop, so I was confident he would sleep right through the 90 minute test, especially since I knew he’d be laying down. Well, what I didn’t know was they actually TAPED his little body to the board so he was in a weird little straightjacket and this meant NO THUMB. (Cue horror music). So he cried and cried for about 30 minutes and then settled into a whimper every few minutes just to let me know he was still dissatisfied with the current predicament.
So here’s the exciting part of this crazy day: WE HAVE AN ANSWER. The test showed that yes indeed, his stomach is emptying too slowly. This is probably causing him to feel full most of the day because the food is sitting in his stomach (getting old and stale). Then when he eats more, he gets sick. Also, (and this is just my own hypothesis sitting here thinking about this), maybe this is why he always eats so much better in the morning- the food has had 12-13 hours to empty from his stomach- and then his feeds get worse and worse throughout the day.
Even better news- there is medication to help this problem! We started it tonight, along with continuous feeds through the NG tube (1 oz/hour right now). Hopefully, with the help of the medication, we’ll get that food moving and we will be able to put some weigtht on that baby!
There has been no mention of us going home. We do know we will be here long enough to establish he can tolerate the feeds and that he is gaining weight. We also are waiting on labs and a possible genetics consult. I am happy to be here- the thought of going home with the tube (which we most likely will) is freaking me out right now. Thankfully, we will have home health care when we do, and I spoke to our pediatrician today and she said she would help me reinsert the tube if I need to. Also, I’m dreading being home because we’ll be back to our newborn-like days of being up every 4 hours (to clean the bag). Ugh.
So, our hardest, worst, and best day since we got here. I feel like we’re finally getting somewhere.