Nights have been pretty rough and days are for the most part great. Colten is healing, improving, and getting challenged. This isn’t easy for him or our family and we know we still have a long road ahead. We are still in the PICU, possibly moving to the general pediatrics floor later this week. Colten is stable and doesn’t really need to be in the PICU, but he’s provided more full-time, dedicated care over here, at a 1:2 or 1:1 ratio. In the regular floor the ratio is much different. Since the PICU has space and they aren’t pushy, our doc is milking it and no one seems to be opposed. Probably because this kid is such a dang charmer. And I have some good pictures so I’ll try to inundate you in this post!
Playing I Spy with Grandma…
Colten is his regular self in terms of alertness, charisma, and asking a million questions. Today when one of his aunts visited, I’m pretty sure he didn’t stop talking for 15 minutes straight. He’s smiling, laughing, and wanting to play. He really wants to go home and he would love to be able to eat or drink something.
Visiting with Aunt Kara… with stuffed animals, giving her a ride on the bed, and snuggling while watching Beauty and the Beast.
He’s still on TPN feedings (fluid through his PICC line), he is getting twice a day injections to stop the blood clot from progressing (these will continue at home for a total duration of 8 weeks, but hopefully go down to once a day – and by the way, NOT looking forward to giving my child injections!!), and he continues to get a variety of medications to help stave off infection and keep pain at a minimum.
While he doesn’t have a lot of pain, it was quite disconcerting last night when he had such spasms inside his body that they gave him valium, followed an hour later by morphine. Thankfully, the other medication that is supposed to help with the spasms appears to have kicked in a little more today and while his spasms still occur, they are less intense and for a shorter duration. Still hard to see him in pain but he really has done AMAZING with this entire ordeal. Very impressive.
Today he finally said, “I hate doctors”, as the nurses were removing his PICC line dressing to replace it. In my very sympathetic-motherly-nature, I said, “Well, good thing these ladies aren’t doctors!” Then he had to think a bit through the pain of getting the adhesive removed, and finally it came out, “I hate nurses!” I feel bad that these wonderful ladies we’ve had with us have to be seen as “bad” in his eyes, because of course, they’ve been incredible! But he does hate when dressings need to be changed, or anything adhesive needs to be removed, and anytime they mess with his PICC line or do injections. Doesn’t seem to be bothered at all by that NG tube up his nose though, as long as it’s not getting yanked back!
Overall, everything in this process is going well and as the doctors would expect. The blood clot was unexpected but it’s being handled and his arm is hardly swollen at all anymore and he plays with both arms very well again. They are keeping a keen eye on blood counts, as his hemoglobin dropped a bit this morning. The surgeries aren’t without long recoveries though, and often have complications in the process, and that’s where we are at. Dealing with multiple incisions, some leaking, draining, and of course, waiting for his organs to wake up so he can eat again.
For a kid that has SEVEN tubes of various sizes coming out of him in various places, he is being incredibly patient and compliant. He hates anyone messing with them, of course, but he isn’t yanking at anything, he isn’t pulling anything out, and he isn’t being in any way what I would expect a four-year-old to be like going through all this. We even have the injections down to a process, where we count 1-2-3-POKE, and then immediately count down, 5-4-3-2-1-and-done, then it’s all done He picks the thigh and the location, demands a bandaid, and puts up with it quite well.
He has also started PT and OT now. He tried standing, requiring a LOT of support, and even tried to take a few steps yesterday (Dad was holding him up but still – he tried!). Today he wasn’t interested in steps. He enjoys going out in his wheelchair to the play areas though – we can only be gone about 30 minutes right now though, due to the NG tube needing to stay on a suction. Thankfully he has SO MUCH to keep him occupied in the room while sitting down. Lots of table-top activities to do, and of course, as much TV as he could possibly want!!
We were allowed to give him a sucker to get his body moving, but he took a few licks and wasn’t interested. We’ll try again tomorrow…
As for the rest of the family, Richard/Dad is at home running the roost (and since I usually don’t let him do that, I’m sure he’s delighted by that!), Parker and Max are still in school through Friday, and Sophia gets to hang out with her dad all week!
We all FaceTimed yesterday – the boys had fun talking, and Sophia just kept saying “Hi Momma”. They got a kick out of the fact that they were all watching the same show from two different locations, at the same time!
Colten continues to get visits from a small circle of people we can have back here in PICU. He seems to enjoy snuggling with anyone that will snuggle, and is always up for games and crafts. And stuffed animals. So. Many. Stuffed. Animals.
We don’t have an end in sight yet here, and are just trying to be patient with this big waiting game. Even when we do get to go home, it will be an adjustment as Colten will still have a few tubes coming out of him (for about 6 more weeks after we get home), and will likely still be regaining strength and mobility. And of course, going home means lots of follow-up appointments to check on progress, and no 24/7 help from these lovely nurses (I am in awe of them)!!
Thanks for keeping up with us, and for the loads of well-wishes, prayers, good vibes, messages, cards and more!