Being back to being hospital mom, the worst thing is when you finally get discharged and then have to return right back to the hospital. You have barely settled at home or caught up on your life again, and then you are starting all over again. This is what we did last weekend.
The next worst thing is when you are told you are going to be discharged. You see the light at the end of the tunnel, and then the discharge plan changes. You are told you are not going home. This is where we are tonight. We have been told since Tuesday morning by our inpatient team that Jacob would go home Thursday or Friday. This has been repeated to us every morning on rounds. We were even told we would get an early discharge tomorrow, so we could get Jacob settled at home and get our nursing set up again.
This afternoon, I filled a red wagon full of bags with the things I have collected during this past week. I didn't leave any traces of myself in the hospital room. I wanted to make sure we had as little as possible to bring back home tomorrow morning.
Tonight, I didn't unpack my bags. I now know I have to bring them all back to the hospital tomorrow morning again. I am extremely frustrated with the medical team. For two days, we have been told we need to have a consult with endocrinology and GI before we go. They both needed to weigh in to our discharge plan. I knew it wasn't going to be easy to go home this time, but there was never a doubt of the medical team that it could possibly not happen tomorrow.
I so remember the hesitation of GI putting Jacob on steroids the first time he had colitis. They wanted to try every possible solution before they put him on steroids. That feels like a very long time ago. Since Jacob was diagnosed with colitis, he has been on and off steroids. Since Jacob's colitis flare up this past fall, we have not been able to get Jacob off steroids completely. When you get really sick, and you have been on steroids for a long time, you need a high dose of steroids for your body to respond. This is called your stress dose. When Jacob was septic two weeks ago, he was put on a stress dose of hydrocortisone for the first time. It is not great to be on such a high dose of steroids, therefore the reason to take him off so quickly last week. I don't think anybody could have foreseen Jacob's extreme withdrawal from hydrocortisone.
Now Jacob is diagnosed with adrenal insufficiency and his immune system is completely suppressed. They think he went into adrenal crisis on Saturday when I brought him into the ED. Yesterday, we started the wean of hydrocortisone once again. We are going 10 times slower than the first time. We know what signs to look for if Jacob possibly is having withdrawal symptoms. What we learned from endocrinology tonight is that if Jacob shows any signs of illness, he needs to be given his stress dose of steroids again. We need to be trained to give Jacob that dose as an injection at home. The message was that we should go to the ED this weekend for any sign of illness. It didn't sound like the best discharge plan.
Later on tonight, GI finally came by. With the start of Jacob's steroid wean, he is not getting enough steroids for his colitis. We are now seeing a flare up of his colitis, and no one is comfortable sending us home with his current stool output.
Nothing is easy when it comes to Jacob, I should know that by now. Tomorrow, GI and endocrinology need to put their heads together (finally) to decide on the exact dosing of each steroid. I don't think we can go home until we have a care conference with GI, endocrinology, and special care (who will manage the wean). Having been too many times in this situation, I can't see us go home until Monday or Tuesday now. It will also all depend on how Jacob is doing of course.
I am frustrated tonight. This whole steroid business with two different reasons (immune suppression and colitis) for being on steroids is definitely not straight-forward for anyone to treat. Thinking about how very sick Jacob has been these last two weeks, settling in at hotel Children's for a 3rd weekend in a row is the only way to go right now. I know that is true, it just sucks a little.
I am hoping we can get everyone talking tomorrow, so we will have more of a plan as we're going into the weekend.