It's about 11:30 p.m. Friday night, and Kevin's been peacefully asleep for about an hour and a half. We watched Home alone tonight. He got a kick out of the lead character also being named Kevin, and enjoyed the movie, but lost steam the last 15 minutes of the movie. Kev's done quite well today. No vomiting to report, and his attitude seemed a little better. He's sick of the hospital at this point. He's tired of the nurses waking him up every couple of hours taking vitals. Last night he even starting making a slapping motion towards the nurse's hands. I was half asleep, but promptly settled him down in the booming voice that Kevin immediately obeys. I've been pretty patient with him, but let him no in no uncertain terms, that he needs to keep his hands to his self, especially since the nurses are just doing there jobs in monitoring him. Becca and Mike have been in town several days and have been a big help to Rachel. Kevin enjoys seeing both Jake and Liam (spelling?). Becca's husband is a very nice guy that I liked immediately........
I hooked up Kevin's TPN today and felt very confident in doing so. For some reason yesterday I was nervous and was fumbling a little, probably because I had never flushed his line before. Today though, espcially since doing it 2 days in a row, it seemed almost second nature. He's down to 12 hours a day now on TPN, which is great. It means he gets a few hours a day not connected to any tubes. We used this time to take several laps around the BMT (Bone Marrow Transplant) floor, which is where most of the kids on inpatient chemo stay. He did well, but complained about walking with his crocs on. He didn't need to ask me twice. Once Rachel relieved me a the hospital around 2:15 this afternoon, I went to Oaks Mall and bought him a pair of Nike gym shoes. I can't wait for him to test the out tomorrow. Every morning we get awoken by the Doctor, and every morning she's indicated his counts (ANC) haven't risen enough. She did say since his white counts started to rise, that typically it means his ANC should follow suit. She was hopefull that perhaps tomorow morning's counts should be on the rise. Rachel and I both agree that it's not the worst thing in the world for him to be inpatient when his counts are so low. He's doing well though, and I can see him doing just fine at the Target House. Next Sunday for Father's Day, the local baseball team, the Red Birds donated a suite to the Target House. I signed up for 4 tickets (the max) so a group of us can go to the game. I'll probably take a late Sunday flight home (game's at 1) so I can make it to work the following morning. I'm still getting work done here though, and being here when he's inapatient is clearly where I belong. I'd be pulling my hair out if I was home. Looking at the calendar today it occurred to me, since May 12, I've been home exactly 1 1/2 days. I have wonderful friends, Ed and Susan Clancy, who've been taking care of things for me at my house in my absence. Thank You guys! At least my utilities should be low this month! Once again, I couldn't have done this if not for the fantastic fundraisers that have been thrown for Kevin. It's nice to be able to buy my plane tickets or rent a car, and not have to worry about the cost building up. Having one less thing to worry about has been an enormous help. In addition to the fundraisers, I've also been sent a few checks including one extremely generous one from my Uncle Tom Thank You!
The Nurses assistant just came into take vitals and Kevin awoke briefly. It's tough to see him get so upset. He usually falls back asleep very quickly, but it's still a drain on him to get woken up several times a night. Because he's so little his blood pressure is very low unless taken whil he's on his back (when sleeping). He sleeps on his stomach/side so it's always a chore getting him into position for a proper reading. He should be out soon though, and his next round doesn't start for 2 more weeks. He should have at least 12 or 13 days at the Target House before we start the cycle all over again. The protocol at St. Judes has plusses and minuses. Rachel, Mike and I feel the plusses far outweigh the minuses. The minuses being of course that he, and by extension us, have to be away from home....Also, he doesn't get much rest between cycles of chemo, so I imagine it's going to be a draining 4 or 5 months. The pluses include a better prognosis, which has been clincally proven through hard numbers.........Also, although the 4 months is going to be a struggle, he at least won't have to endure chemo for 18 months like many other protocols call for. The other protocols don't do the stem cell infusion, so they have to do much lower doses or wait much longer periods of time between cycles. If all goes well, Kevin can begin the road to recovery starting this fall as opposed to going through all of '09. St. Judes really rolls out the red carpet for the kids too. Kevin has a Wii in his room, as all patient do. They cater to the kids in every way possible here.
I'm getting sleepy.
Take Care all,
Eric
No comments:
Post a Comment