14 Jun Here we go again
Keegan was, as we said earlier, admitted back to the hospital yesterday morning. He struggled through Audrey’s party and really declined quickly overnight. He maintained a 103+ degree fever throughout the night and started retching and throwing up in the middle of the night. Evidently, his body was trying to focus blood flow on more critical organs. So his stomach couldn’t tolerate anything in it, and his torso and head would be burning up while his hands and feet were cold. By 5am, his temperature hit 104 degrees and back to the ER we went. This weekend’s fever was absolutely the hardest one on his little body. Keegan felt so terrible. It just broke our hearts, especially when he would start mumbling, “I’m sorry, Mama.”
The fever finally broke by late last night. We were already planning on coming in later this week for the steroid pulse, but since we are here already, things are kicking into hyperdrive. Here’s the plan for this week:
- Today, Keegan had another infusion of albumin and IV lasix to try to pull off the extra 3 pounds he is carrying of fluid right now.
- Tomorrow, he will have another colonoscopy done to get new intestinal biopsies. Since the last scope was almost 2 months ago, we need to have a good idea of where we stand before the steroid pulse starts. And who knows? We might find something that gives us an idea of where these fevers are coming from. Everyone has been quite quick to blame them on inflammation from his GI problems. Maybe we will have a clearer picture after repeating the scopes and biopsies tomorrow.
- Unfortunately, that means Keegan has to be “cleaned out” tonight. Oh so fun. Even though he has not had any feeds since early Sunday morning, you can bet the onslaught will be bad tonight. The worst part is the high volume of solution that has to be pumped through him usually causes him to start throwing up at some point. Yippee…
- We are anticipating a neuropsychology consult sometime this week to get a good read on where Keegan stands cognitively and developmentally. That way, we have a baseline with which to compare him months down the road if he develops more brain bleeds.
- No matter what the scopes say, we will start the steroid pulse Wednesday or Thursday. He will stay inpatient for at least 48 hours after it starts for monitoring. We are most concerned that his bone marrow will have difficulty with the weight of the steroids. Between the scopes, his anemia, and a few big labs that need to be drawn, it is conceivable that we may have to support him with another transfusion sometime this week.
- As you can tell this puts us dangerously close to being inpatient or going home at his usual fever time. The team is working on getting him set up through home health for IV tylenol at home, so that we can better support him there through another fever cycle.
- The team wants to repeat an echocardiogram sometime within the next two weeks. We will just have to see where we are when they want to do it. Between his “stiff heart” (increased diastolic pressures) and the donor-specific antibodies, we are going to be watching his heart very, very closely from here on out.
