Keegan’s fever broke early in the morning today. He was amiable but refusing to leave bed for most of the day. All in all though, it ended up being a pretty happy Friday. We had our first big meeting with GI today. As always, Dr. Kamin is tackling things head-on with Keegan once again. They are still reviewing his history, his old procedures and labs, and reviewing with us to ensure they have everything right as to how Keegan has been doing from an intestinal standpoint. So, they haven’t come up with an overarching plan or any new possible diagnoses just yet. Dr. K was trying to collect all the data before jumping to any conclusions. In order to do that, he felt we needed to at least jump on the opportunity of no fever over the weekend and try to challenge Keegan’s gut a little. The fevers throw a big wrench into the picture. Since we are all in general agreement that the fevers are indicative of an immune response/inflammation process, it is no surprise that they do affect his GI system. They probably would in a normal person, even more so with a not-so-normal one.
So, how do you challenge Keegan’s gut? For the last several months, it has seemed that even minimal amounts of a very diluted, very elemental formula challenge him on a daily basis. The team felt that since the tube feeds were doing absolutely nothing for Keegan and he is stable on TPN for nutritional support, we should try to stop the tube feeds and add in some solid food in a very planned and controlled environment.
And so, Keegan ate a graham cracker today!
His first food by mouth since late February!
“Wait…you want me to eat that?”
He looked at it for awhile. He licked it. He nibbled it.
Not so sure about it.
Kinda remembering what it tastes like. Still not so sure.
“Really funny, guys. You can take these back now.”
Not exactly the response we were hoping for. I can’t say that I am wholly surprised though. Keegan ate a little bit of food back in January to February, but he really hasn’t eaten consistently since early last November. He did ultimately eat one square of the graham crackers. We offered more multiple times today, which was declined each time. Hey, at least he was polite about it. We will offer more tomorrow and possibly Sunday, just to watch what happens with his diapers. He had a few bad ones after the graham cracker, but I wouldn’t say just yet that it was a direct response. Could just be “normal Keegan” fluctuations.
But the tube feeds are gone, at least during this trial. Due to his kidney function and the steroids, he is extremely fluid positive right now and needs to get rid of a little over five pounds. The tube feeds were very, very minimal, only about 10 ounces per day. Losing them won’t make much difference, but he has some wiggle room of healthy weight loss to cushion him too. This is not a permanent solution. No one is suggesting we just lose the tube feeds forever and continue with diarrhea and TPN long-term. That might end up being what happens, but for this weekend at least, we are just doing a test of sorts to see what will happen. Collect more data, as it were. As Dr. K said today, once you have all your dots, you can keep throwing them against the wall to determine if you see a new way to connect them.
Around 4pm, we finally convinced him (after a lovely little meltdown, of course) to take advantage of his newfound freedom and leave the room. He did fine once we were out and about. We found the playroom and grabbed some toys to keep him busy over the weekend. Then, we ventured outside into this beautiful 67-degree, ragweed-free evening.
“Hold my hand, Daddy!”
The Prouty Garden
It should be an interesting long weekend between him (hopefully) having a little break from the fevers and challenging his tummy. It’s difficult to imagine being inpatient on his “good days” and keeping him busy. Other than the GI test, we have no other plans for the weekend. Transplant is going to let GI have these fever-free days to take over the show for a bit while they continue researching and pouring over Keegan’s history. Then, they will ideally be more ready to tackle the fever when it reappears next week.
And in case you were wondering how Ladybug is doing, well, she is just as cute as ever.
Swimming at Great Uncle Tim’s for Great-Grandpa Max’s birthday
Sun and water are two favorites of this little fish! Takes after her mama that way.
Miss these sweet chubby cheeks!
Big Daddy and Audrey…and yes, she’s just in a swim diaper.
