04 May Waiting, waiting
I’m being a bad blogger, I know. I apologize to all of Keegan’s faithful followers and to my future self who looks to this blog to remember medical details that have since fled my mind. I just don’t have the energy in me to hash it all out in writing at the moment, but I will do my best to cover the major points. Please forgive me in the meantime. The beginning of the week was quite tense, but we find ourselves just waiting and biding time on just about everything right now.
It seemed earlier this week that, in a not so surprising manner, the different specialists involved in Keegan’s care were not not communicating well with each other or with me and Gray. The whole right hand-left hand communication issues are exponentially more exasperating when they involve your child’s medical care than in just about any other possible situation. There wasn’t as much disagreement as there was simply assuming what other doctors would say or do, instead of all getting together to discuss a single plan. Additionally, the head of rheumatology has been tasked with making the decisions on which drug to start and when. However, she is not on service at Children’s and hasn’t been in town for awhile. After months of saying we need to make these changes and seeing his disease process escalate in the face of an infection, we are quickly losing patience with not having a plan or at least a next step settled. It isn’t as urgent as we would like it to be anyway because we can’t do anything at all until we are finished with the entire course of treatment for this infection, which won’t end until next week. That’s where the rest of the tension arose over the last few days.
Again in a not surprising in the least manner, the transplant team decided (without our input and in fact quite against our stated wishes) that we could handle the 24-hr a day of IV medications, nutrition, and central line lock therapy from home because Keegan was no longer symptomatic of the infection. I was trying to bite my tongue and allow the logistics to speak for themselves, all the while fuming inside that our needs, comfort, and wants were being flat out dismissed. Ultimately, that’s what happened. Some of the protocol for treatment is not available for use outside the hospital setting, and the level of antibiotics in Keegan’s blood has been swinging dramatically and in a very unstable manner each day. Both of which will necessitate that we stay inpatient until next Wednesday at the earliest. I could write an entire book on this issue. When it is all said and done, this is where he needs to be now – no matter how much we wish he didn’t. I simply wish that this fiasco had been the “a-ha” moment that it could have been for this team. Instead, I will likely end up sitting on my frustrations until the next issue simply because the proper outcome occurred, not because of the proper motivation for reaching it.
So that leaves us once again with the waiting. Keegan is feeling much better and appears outwardly extremely stable despite it all. The steroid pulse is over, so we are just dealing with the lovely readjustment phase to his baseline dose now. Tuesday was pile of goo/emotional train-wreck day. Yesterday was swinging between giddy goofball and energizer bunny, and today was bouncing-off-the-walls crazy. Ahh, the stages of Keegan on a steroid pulse. Who knows what tomorrow will bring, but for now, we will be stuck riding them out inpatient. When he feels well, it is a challenge to keep him entertained in the hospital, but we are doing our best. While we do that, we just have to wait out his blood cultures, the remaining 6 days of antibiotics, and attempts to rally the troops to put an actual treatment plan for his immunodeficiency. Just a few things on our plate.
There is no way we could possibly say thank you enough for all the prayers and support sent Keegan’s way. Words simply fail us when we try to explain how much each of you mean to us on this journey. Thank you so very much.
