08 Aug A fever, a birthday, and some bows
That has been the theme of the last few days here at the Harrison house.
Keegan’s fever held out until early Saturday morning around 4am. This was a break from what had become his “norm” of the fever coming every 6-7 days. It “should” have come back on Tuesday. When it didn’t, it just made us all extremely on edge waiting to see what would happen. Instead, Keegan has started having some extreme and random temperature fluctuations this week. He would heat up to upper 98s to mid-99s, and then instead of continuing to spike, it would quickly be followed with him becoming kind of clammy cold. It would disrupt his sleep overnight, but during the day, it didn’t seem to bother him that much.
Saturday morning, he reached 101. We held off on tylenol because he seemed to be handling it ok. Our transplant coordinator was able to get the Legacy ER to draw the obligatory labs as an outpatient lab visit, so we didn’t have to incur yet another ER charge. SO helpful! Last night, his temperature reached into 102, and he began the garbled jibberish that has come to signal a problem to us. So, we gave IV tylenol, and he was able to sleep again. He spent all day until about 5pm on the couch today with several quick temperature fluctuations. However, his heartrate has not come down just yet, so we may be in for one more night on this cycle. All in all, this one seemed to be milder than the others though. These little random spikes he has been having nearly every day don’t seem to be as hard on him. Although, they are just as, if not more, unnerving for us. Even if he tolerates them ok, it is absolutely not normal and indicative of a problem of some kind.
Of course, all this happened on Gray’s birthday weekend. Despite the fever and Keegan feeling pretty crummy, I think Gray had a good birthday. I hope! Keegan and Audrey had some fun painting a birthday banner for their Daddy. My mom made Gray an insane chocolate cake, and Granny made him a chocolate pie. It’s quite possible he will OD on chocolate over the next few days, since he is really the only one in the house that eats it. Ok, I guess Audrey will help a little! Ha!
Lastly, we finally tagged and bagged all the bows that were donated to the hospital in honor of Audrey’s birthday! What an AMAZING result! Y’all are awesome! We collected so many that we were able to spread the love a little. I separated them into three boxes – one for the CVICU, one for the heart floor, and one for the GI floor. Each box has over 30 bows in it to start, and we have an enormous bag of bows that we can use to refill the boxes over the next few months. Child Life was ecstatic at the idea of having such gorgeous bows to give to the precious little girls on the floors. And who knows? We may just have to keep it up permanently!
Big week ahead. Gray and I will have a conference meeting with GI tomorrow afternoon, and we were told his biopsy results should be available then. Keegan has an appointment with the immunologist on Wednesday. A lot rests on the information we are able to gather, or not, from these meetings. If either or both of them are out of ideas, it will be time to seek out another opinion for Keegan. It is very difficult to consider that right now. It’s not nearly as easy to pack up and go these days. But we will do what needs to be done to help our son. We will find a way to make it work. We would greatly appreciate your prayers for Keegan’s stability and for wisdom and clarity for the doctors, Gray, and me this week as we ponder these big decisions. Thank you, as always, for your continual support and love for Keegan and our little family.