There are times I think back on our hardest hospital stays. I often wonder how we did it, and how I will do it again when the time comes. The answer is simple. There is no choice. There is just not a chance Jacob will ever be alone in this. We are doing the smaller part of the bargain as our boy fights for his life.
We're on day 10 in the hospital, and it hasn't been an easy stay. Jacob was so sick when we got in, me always fearing this is going to be the time he will not win the battle. Jacob has also added diagnosis after diagnosis over the years, which makes treatment harder. If you do one thing, it will impact another organ or diagnosis of our boy. Jacob is getting so much sicker when his own body can't produce adrenaline. Dealing with steroid dependency is not something I wish anyone. I know now why GI was so hesitant to start steroids on Jacob two years ago. They knew the road we were going down, and I am sure their worst case scenario is where we are now. We will never get off steroids.
The good news is that we're out of the PICU. We're on the 9th floor, and I do appreciate that I can close the door as I am cuddling up with Jacob in bed. We have our own toilet and shower. Being in the fish tank on display for 8 days is a long time, especially when two kids die on the same night. It hit me hard this time.
The other good news is that Jacob's EEG is unchanged. Unchanged doesn't mean good. His epileptologist in fact called his EEG "ugly". Jacob's brain spikes at all times. What it means for us is that we should not chase Jacob's lethargy as seizures. A big sigh of relief. It was very hard to see Jacob's wrapped head and the very active screen of Jacob's brain. I have seen a few too many EEGs to know Jacob's is not good. For 24 hours I was trying to suppress my worry about his EEG possibly being worse. The word "unchanged" was like music to my ears, and as I was driving home the tears of relief and sadness came.
Today we had another turn for the worse. Yesterday, Jacob was moved to oral steroids and the dose was taken down to his new maintenance dose. Hello colitis!!! Jacob is tonight back on a stress dose of steroids, and we're waiting to talk to GI in the morning about a plan. In the meantime, we are changing diapers like there is no tomorrow. In the middle of Jacob stooling, he actually looks really good. He is alert, and very much looks his handsome self again. Did I say this happened after we were told we were going home today and our car was packed with all our stuff? It sure is an emotional roller coaster.
Tomorrow is going to be crucial. It is all going to depend on how well the GI attending knows us, and how comfortable he is going to be to a) jack up the steroids without lab results being back and b) let us manage this from home. Where we are tonight would not be a good place to go home.
I feel as if we relive our hospital stay from two years ago. Jacob came in very sick, was very lethargic, all labs were negative - and then the colitis came! It is as if Jacob gets really, really sick before the stool shows up. I also think the stress dosing in the PICU masked the colitis.
We're four days away from Thanksgiving. We would love to be home with our boy in time for turkey.