(This will not be a well written post- I’m really tired/stressed and writing this just as an update for people and for me to have in my records.)
Grayson has been in the hospital since Sunday night. Sunday afternoon he started vomiting, but since he throws up almost daily, we didn’t think much of it until it didn’t stop. He fell asleep before 5:00 pm so we put him to bed, but he kept waking up to throw up. We ultimately decided he needed to go to the ER about 9:00 pm because he just looked awful in addition to the vomit.
He threw up twice in the car on the way to the hospital, making the total about 8 or 9 times since 3:00 pm. He was really pale and the circles under his eyes were really dark. When we got to the ER, they did a CT scan, drew blood, and started fluids. The scan showed no intestinal blockage, but that he was really backed up. His labs showed slightly elevated liver enzymes and a high white blood cell count.
Early afternoon Monday the nurse was changing his bed linens so I was holding him up in the sitting position. He started throwing up, but this time it was dark green bile, and a lot of it. Really scary. Dr. K came by and told us they were concerned again there might be a blockage and if there was he would need surgery that night. Great. They called in Pedi surgery to do an assessment and an abdominal x-ray. Thankfully, again, no blockage, but no still no answers why he’s sick.
By yesterday afternoon, he was feeling a lot better. This actually made being in the hospital harder, because he was so bored and whiny. Even his Veggie Tales weren’t cutting it. ALL afternoon I held him and his million tubes and wires and sang the same 7 songs over, and over, and over. For Grayson, if he doesn’t know the song, it’s no good. And of the ones he does know, he only likes certain ones. Nothing like being whacked in the face repeatedly with an IV arm cuff because you are singing the wrong song, or the right one but for too long. Sigh.
The Pedi team assessed him yesterday afternoon and predicted we would be able to go home this morning. I traded with Ryan about 5:00 pm thinking I’d be back here in the morning just to take him home. Around 9:00 though, I got a text that he was vomiting again. He threw up six times in 20 minutes. So much for going home. They stopped feeds overnight and have just now started up again, but very slowly. He is also still constipated. If he tolerates his feeds and we get them back up to full speed, and get him to poop, we should be able to go home tomorrow.
Ryan, my mom and I have been juggling things this week. At the hospital, Ryan does evenings/nights, I do days, and my mom has been keeping Charlotte during the day. It’s tricky- I have been trying to pump but for some reason my body just doesn’t respond well to the pump and I hardly get any milk, and just end up really sore. I need Charlotte as much as she needs me- ha! I hate, hate, hate that I can’t be at the hospital 24/7 with Grayson, but at this point in life, it’s just not possible.
The scariest part about this whole thing is just how fast things go downhill. Sunday morning we went to church and things were fine. We were excited about him starting summer school Monday and attending 2 birthday parties this coming weekend. With Grayson, we really have no warning when he’s going to get sick; he’s fine one minute and needing to go to the hospital the next. Mito is a cruel, unpredictable disease.
I’m hanging in there, but barely. I was talking to a nurse yesterday- I think about needing to pump, and juggling two kids when one is in the hospital (this is our 4th stay in the 4 months since Charlotte has been born), and she said the good ol’ “God doesn’t give you more than you can handle” line (Barf). I actually said this to her…
…which may be true, but this is more how I’m feeling this morning…