Alec has made great progress since we’ve been home, but it’s also been a difficult adjustment. He’s now able to walk around the house pretty well and can get out of bed on his own fine, but his legs are still too weak for him to get up off the floor or out of the tub without help.
He’s also still tapering off the sedation medication as well as the appetite stimulant steroid and now he’ll also have to taper off the blood pressure medication so that he doesn’t get hypertensive. The biggest hurdle was getting his bowels moving again. They had given him Miralax in the hospital and had overshot the mark and cleaned him out, and once he got home that all stopped again. Because of his sore throat, he started on only formula at home and that with the blood pressure meds stoppered him up. We tried several days of increasing Miralax doses, but he was too scared to try after the trauma in the hospital at the beginning of his stay.
Laura finally tried a sticker chart (sit on the toilet for 2 minutes and get a sticker, get 5 stickers and go shopping) and within 90 seconds he was done. Laura and I couldn’t talk, soothe, or coax him into trying, but a SpongeBob sticker did the trick. He also walked the fastest I’ve seen him so far when I reminded him he forgot to post his sticker last night.
He was finally eating enough where we could pull in NG tube on Sunday, and he was happy to have all the tape off of his face. I’m happy not to have to mix up any more formula, but we have two cases left so I’ll have to find somewhere to donate it.
Today we went down to the clinic to begin our long-term maintenance chemo. The day did not start well; we had a lumbar puncture scheduled, and since that’s a sedation procedure, we have to be down there at 8:00. I hit mile marker 100 on 131 at 7:30, and it’s usually about 15 minutes to the hospital from there, but today it took 45 minutes because of traffic. I’m not sure why. There were no accidents and no slippery roads, it was just cold and dark and busy.
After that, we got there and started an IV. Since his port is not replaced yet, we needed the IV for the blood draw, chemo, and sedation. He was upset as I expected; however, we hit the lucky combination of good vein and skilled nurse and it went right in on the first try without any moving it around.
But our luck ended there. Just as the nurse practitioner was explaining the protocol, his counts came in and she said, “and we can’t start today.” His platelet counts were too low. They were 55 thousand (high for him) but they had to be 75k. At first, they decided to run his monthly pentamadine (antibiotics) since we were there, but I looked in my notes and it had only been 17 days since his last one, so I asked to put it off and they did.
It seems that the clinic may have not paid close attention to some of his hospitalization. The NP said she didn’t want to run a platelet transfusion because of his risk of reaction, but I reminded her that he had twelve platelet transfusions during our inpatient stay without any problem now that they are using washed platelets. I’m not sure that information got through. In the clinic, we have a lot less contact with the staff, unlike in the ICU where I had daily meetings with the whole team working on his care, but we’re also at the clinic only a few hours rather than around the clock. It was also supposed to be a routine visit today anyway, so we didn’t have much face time with the decision makers scheduled in.
So we wound up with no treatment today, and we were out of there by noon, a wasted trip. However, he was thrilled to go to Toys R Us. It was his first shopping trip since November. We had a great time looking at all the Lego, Kreo, Cobi, K’Nex, and Mega Bloks building kits. There were something like four aisles there. We were looking for more SpongeBob Legos, but they were gone, so we looked at the K’Nex Mario kits, and the Scooby Doo Cobi kits. We took the wheelchair in with us, but he walked around to look at toys a few times. He did lose his strength once and collapsed into a pile, but that didn’t dampen his fun. We of course found a new Thomas and Friends kit to bring home.
Our other piece of good news: Make-A-Wish is starting to book his trip. We got the phone call yesterday and we’ll be going to the Give Kids the World Village next to Disney World in early May. They’re booking our plane tickets any day now!