We’re back at Children’s again as of yesterday. Since our last hospital stay almost 3 months ago, we have been working with GI and Endocrinology to wean Jacob off his steroids. We have tapered the dose slowly each week, and Jacob was doing great. No sign of colitis or adrenaline insufficiency.
Well…until this last week. We were on an all-time low level of Prednisone, and Jacob started to show little signs here and there of not completely agreeing with the steroid dose. He was not sleeping well, his heart rate was higher than normal, he needed oxygen during the day, and he had more myoclonus. Saturday night, Jacob had insomnia. Nothing could get him to fall asleep. In the morning, he had elevated heart rate and needed oxygen. As the day went by his blood pressure started to drop…I gave Jacob his first injection of stress steroids, and it was time to take a trip to the Emergency Room.
The reason Jacob has adrenaline insufficiency is that his adrenal gland is asleep. This can happen to anyone who has been on steroids long-term. His adrenal gland is not producing adrenaline and cortisol right now. This means that any time Jacob’s body is under stress, he is going to need higher doses of steroids to help his body to fight. This is what is called stress doing. As soon as you open up Jacob’s medical chart, it pops up a red flag telling the team he is adrenaline insufficient.
Our hope and plan was to slowly taper his steroids and wake up his adrenal gland again. The doctors had predicted that if Jacob’s body wouldn’t agree with this plan, we would see signs of adrenaline insufficiency in about a month. As always, Jacob doesn’t follow any typical plan, so yesterday was the day.
The good thing is that he is not sick. All the labs and tests are coming back negative. On the other hand, this means that he became adrenaline insufficient from not getting enough steroids this time. Our boy is officially steroid dependent. Yep, that sucks. It is not good for his already low immune system and for his bones. It is yet a medication to add to his list of permanent medications. The plan is now to find the lowest magical dose Jacob can safely be on. We also have a new plan for stress dosing, if Jacob gets sick and we will continue to have hydrocortisone injections wherever we go for true emergencies.
I am actually taking it pretty well, and so is his medical team. In the big scheme of things, we can live with this. If this can keep Jacob from getting into adrenaline shock and his colitis at bay, we are fine. Being in the PICU is also always a reality check.
The plan is to remove the IV antibiotics by midnight tonight. We will discuss the exact steroid plan during rounds tomorrow. If Jacob behaves, we should be discharged straight from the PICU tomorrow!
Jacob also got to play astronaut for 30 minutes today. This is a new test only available in the PICU. It measures your exhaled gases, and the test determines exactly how many calories you need. Jacob is getting about 150 extra calories each day right now, so we will be cutting his daily intake down a little bit. This explains his steady weight gain, and everyone agrees to keep Jacob lean and healthy.
Jacob has his best friend’s birthday party tomorrow. We are not sure we can make it, but we will try! We also have a week off from school, so we are hoping to check off a few things from Jacob’s summer bucket list.
Next Tuesday, we are back at Children’s for ear tube surgery and dental work. We are hoping it will be another short stay in the PICU!
Until next time,