05 Sep Bye-bye PICC
There truly is never a dull moment with Keegan. Never an opportunity to have just a normal, fun or relaxing weekend.
There is a small playground at the hospital. Friday afternoon when we finally convinced him to get out of bed, we showed him the playground. Keegan probably hasn’t been to one (except for his little fort in the backyard) since at least January. He went down the slide a few times and walked around, but he was fresh off his last fever and not feeling quite right yet. So, we went back yesterday afternoon and did a little better.
This afternoon, the hospital’s air conditioning had a brief slow-down, making it a little steamy in the room. Since Daddy had stepped away to get some work done, I asked Keegan if he wanted to go outside. This time, he said “slide?” immediately. There were a handful of kids out there, and he was slightly apprehensive about all the running around they were doing. So, he took a seat on one of the benches to watch. The benches are made of a metal “mesh” with round holes…exactly the size of the end of Keegan’s PICC line. He tried to turn around on the bench, and in an instant, his PICC got caught in a hole and stayed there. Even as Keegan stood up. Ugh.
I put pressure on his arm, and scooped him up to run back to the room. The nursing staff and resident handled it very well. We stopped the bleeding and did an xray to be sure none of the line broke off in his vein. They measured the line and called Dallas to see if there was any documentation of the length of the line. There wasn’t, but from our best estimates and a clear xray, it seemed like a little blood from the pulled stitch and insertion site was the worst of it.
Luckily, he still has his port. It was still leaking two weeks ago, and the original plan here was to worry about that after everything else was over. Our hand has been forced into using it for now. Maybe we’ll get lucky, and it will start behaving now. The oncology charge nurse came over from Dana Farber and accessed it. Different type of needles here, which might help. That wasn’t a fun cap to the day, but at least he gets his IV nutrition tonight. He will need it considering the minimal eating he is doing during the day.
GI instructed us to pick one new food every two days. Simple carbs, no fats or fruits, and no leading tummy-upsetting/allergy culprits, i.e. dairy, eggs, soy, shellfish, etc. That basically leaves us with plain crackers, vegetables, and bland meat. We started with the ubiquitous graham crackers. There was no additional enthusiasm for them yesterday. I think he ate two, instead of one. So, today we went with an old standby…plain goldfish crackers. He ate 30 this morning and then tried to throw them up on the cardiologist. He refused them the rest of the day until around 5pm. With George to distract him on the TV, he downed 60. And kept them down! It’s better than 2 graham crackers!
Unfortunately, he has had quite a few bad diapers yesterday and a few today. I think it’s too soon to tell if it’s directly related to the food or not. We need a few more days to be sure. It’s not as bad as it could be, I suppose, so we’ll take that. I’m not sure what any of us were expecting to happen, which makes it a bit tougher to decide what it means. Tomorrow we will offer more goldfish crackers. Then, it will be about time for another fever spike, and any conclusions about his reaction will be clouded by the effects of the fever. One day at a time for now though.
We had a great discussion with the cardiologist on service this weekend yesterday. She spent a lot of time answering our questions, discussing the differences in their approach to transplantation, and going over our expectations for this trip. Even though she’s not our primary here, we really enjoyed having her spend uninterrupted time just getting to know Keegan and talking shop. The transplant team is trying hard to get caught up in time for the next fever cycle. They want to be able to evaluate it based on what they know and not just react to the fever itself. Just like with the port, there are a lot of things they want to just leave alone while they focus on the fever and the related autoimmune reaction, i.e. his immunosuppression regimen, his blood pressure, his fluid retention, etc. The fevers top the list of to-do’s with Keegan, so we are trying to keep everything else stable for now. That being said, we likely only have one more day to get ready if the pattern from the last two weeks hold.
A little drama here. A little drama at home. Audrey has been running a low-grade temp. She doesn’t want to eat and feels pretty crummy. I feel worse knowing my baby is sick (for the first time), and I can’t be there to make her feel better. Absolutely breaks my heart. Please say a little prayer that it’s just a little virus that passes quickly.
And also a very, very big prayer for our sweet friend, Rylynn. She is relying on a Berlin heart (a ventricular assist device) while she waits for her angel heart. Ry had to go back to the ICU today because her kidneys were starting to get a little unhappy. Please join us in praying for lots of wet diapers and a better day ahead for Ry and her family. Thanks friends!