25 Dec Christmas Eve
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It was a fairly quiet Christmas Eve here in the hospital. I suppose when it comes to Keegan, quiet is a good thing. We learned that the pseudomonas was susceptible to the IV antibiotic we had been using. However, Keegan’s white count and ANC have dropped to very concerning levels, and it’s possible that particular antibiotic could have been contributing to it. Keegan’s ANC is already always low, but today it dropped below our usual threshold to restart GCSF injections to raise it back up. We haven’t done that since last year. We are going to wait until tomorrow to see if changing antibiotics alone will fix the problem before we have to resort to the injections.
Keegan obviously is in need of his TPN that he should be receiving tonight, as his electrolyte levels continue to drop. TPN can only be given through a central (or somewhat central) line, so he won’t be able to get it again until after his new line is put in. That has been pushed back to Thursday now because the culture from the 22nd grew back positive too. Keegan needs three days of negative cultures in a row to be cleared for a new line placement. In the meantime, we are replacing what we need with IV supplementation through his peripheral line, which became another problem when we lost both of the lines the OR put in last night. It took 2 teams, 3 sticks, and until 11:30pm to get one in his hand. It’s a good one, and he doesn’t seem to mind it. Hopefully it will make it until Thursday. We are lucky that his anakinra can be given through the peripheral line. At least one thing works in our favor.
Other than that, he was an emotional MESS today and extremely tired. The only time we saw smiles out of him today was after his IV anxiety medication was given to prepare for a lab draw. He slept most of the middle of the day away and was ready to go to sleep tonight early.
These pictures are from yesterday, but the sentiment shown remains true.
Thanks for the pizza set, Helene! He likes it; I promise! 😉
We didn’t have real pizza, so we tried to make some out of playdough instead.
Other than that, it was just a quiet day trying to keep Keegan happy. There’s not alot of commotion in the hospital on Christmas Eve, other than discharging as many patients as possible. We watched Christmas movies and took him on some wagon rides to check out the Christmas trees and decorations. Then, we were able to FaceTime with my family tonight after dinner and watch Audrey open some presents. Definitely the highlight of our day!
Audrey with the gingerbread house she helped me make last week.
She was pretty proud of her work
…and of how many “sprickles” (sprinkles) she put on it.
On the rocking horse Poppy made for Alex and me when we were her age
Sure miss this beautiful face when we are apart
Tomorrow will be the first Christmas morning we have spent inpatient. We have been discharged on Christmas Eve in the past and admitted late in the evening on Christmas Day, just not been here Christmas morning. My parents will bring Audrey up to spend the morning with us tomorrow so that we get some quality family time together. Gray and I are upset that we will not be able to enjoy Christmas at home tomorrow, but we are thankful that Keegan and Audrey don’t fully understand the complexity of the Christmas tradition. The meaning of Christmas does not change whether it is celebrated on December 25 or any other day. We will have our own Christmas when we are home together, and it will be extra special. After all, we’ll be the only ones Santa comes back for, right? 😉
From our family to yours,
we wish you a very MERRY CHRISTMAS!!
“The Word became flesh and made His dwelling among us.
We have seen His glory, the glory of the one and only Son,
who came from the Father, full of grace and truth.”
John 1:14
