I HAVE DREADED THIS DAY

I have dreaded the Friday before spring break for a while now. Last year on this day, we didn't know if Jacob would make it. He was diagnosed with bacterial translocation of his gut due to having a severe allergic reaction to protein. This was also the first time Jacob showed us signs of adrenaline insufficiency. There was not much of a spring break last year. I spent most of the week in the ICU with Jacob while Sarah and Joakim were skiing with the kids' cousins visiting from Sweden. When I finally made it up to ski for a day, Jacob went into adrenaline shock at home and I barely made it home to change out of my ski clothes to once again rush Jacob to the ED and PICU. A very scary day and spring break.


I am typically not superstitious, but as we were coming up on this day again, I saw way too many familiarities with last year. We had once again Joakim's family in town, we had once again a vacation planned in Breckenridge together with an elaborate nursing schedule for Jacob, we even had a doctor's visit with the same doctor on the same Friday! It definitely got me to think about last year, and how things would pan out this year. To the picture we have to add that Jacob hasn't had a great week. He has struggled with ear infections for the last month. They move from ear to ear, and Jacob was finally put on steroid ear drops on Monday. Jacob has also been extremely tired and lethargic this past week. Each day he has been sleeping more, being awake less. There are so many reasons for Jacob's body to be tired, but it's just not our boy's pattern. He sure enjoys a nap, but never sleeps for hours on ends. I knew something was wrong. We started to stress dose Jacob yesterday afternoon, and called Dr. E to get a plan for labs and going to Special Care Clinic.


As soon as I heard they wanted to do IV steroids, I knew we were getting admitted. We need to get him stable again before he can come home, and we need a good steroid plan. We have known for almost a year that Jacob will be dependent on steroids for the rest of his life. We have tried so very hard to wean him off, but after him going into adrenaline shock last year, everyone concluded that being steroid dependent is safer than going into adrenaline shock. Once again, I think we see a "new" Jacob. We are faced with a Jacob who is needing even more steroids to go through his regular day. This is not so much about colitis any longer, this has now turned into a severe adrenaline insufficiency.


Dad and Jacob are hanging at Children's tonight. The plan was for them to hang at home this weekend while I took Sarah and the grandparents up to Breckenridge. We made it up here tonight, and the plan is for Sarah and I to ski tomorrow. I am going to try really hard to stay in the moment and enjoy that day with her. I know our boy is in good hands with dad. We're hoping the steroids can be figured out quickly, and that we all can get to enjoy this spring break just a little bit.


Love, Maria.