Matthew has been on quite a roller-coaster this week. We've had food marathons, lots of bacon and pizza, supercharged emotional mood-swings, and sleepless nights. I was bracing myself to go to work tonight and tomorrow on no sleep. Then, yesterday afternoon, Matthew went to sleep at about 2 pm. Since then, he sleeps for long stretches, only waking up for an hour or so at a time to eat in large quantities. Then he goes back to sleep. Most of the time insisting that I sleep too. I'm all slept out, and that's really saying something!
Finally, I decided I better call the clinic. The nurse (Tricia, who I LOVE) called back and said she thinks we need to check his counts. We were sure he'd need a transfusion on Tuesday, and then his Hematocrit was fine. More than fine. Really good. But it was weird, because he's been really tired, and sleeping a lot until the steroids kicked in, and now even on the steroids. So we're going to check again.
Since this is just for a CBC (complete blood count - they'll draw his blood to find out his levels), we decided to try Home Health again. The first two times were not good, and I don't have high hopes, but I have friends who absolutely love their Home Health nurses, so I'm going to give it another shot. It sure would be more convenient!
So, here's the Home Health scoop. Matthew's protocol often calls for a CBC the day before treatment because a lot of his chemos require at least a certain ANC (absolute neutrophil - that's the infection fighting white blood cells) count. Most people have Home Health come out the day before and draw a CBC. Then you know if you met counts or not, so you don't waste a trip to Primary's if the counts are low.
We opt out of Home Health, and instead, we go to our appointments about half an hour earlier, knowing we will have to wait an hour for the CBC results before he can get any chemo. We do that because the two times Home Health came out were disasters. The first time, the nurse said she'd been doing Port accesses (that's his implanted central line, which they have to poke a needle into) for 14 years, and she never misses. She poked him 3 times, and never got blood. So we had to get the CBC at the clinic the next day anyway. The second time, they sent a guy who works at Primary's, and is comfortable with port placement, but new to Home Health, and a nurse who has worked for the company for a long time, but was learning how to access a port out together. They were teaching each other things. The nurse from Primary's poked him 3 times, with no luck. When he stopped trying, he realized the needle was sheathed, and that's why he wasn't getting anything, but Matthew was NOT about to get poked again. So then we tried to get enough blood from his finger. He poked him and kept on squeezing Matthew's finger, getting tiny little drops of blood until the bleeding stopped. He didn't even have a tenth of what you need for a CBC. He wanted to poke another finger, and I said no. So, we got our CBC at Primary's the next day, again.
Both times, it was way worse to even try to access him while at home, and I think it's because home is supposed to be the safe place, where he doesn't get poked.
The following couple of weeks were uncharacteristically difficult with his port. He had a lot of extra fat on his chest, so the port was difficult to access in the first place, and even after it was accessed, it was sluggish. Finally, one day at the hospital, the nurse couldn't get more than a few drops of blood from it, so she put something in to clean it out. It took an hour, and then a good, strong flush, and then it worked like a charm. There have been no problems with his port since then.
The thing is, in two weeks he has to get IV infusions of a new type of chemo for 4 days in a row, and then again the following week. Those infusions can happen at home - he only has to go to the hospital for a check up once a week. So we need to figure out the Home Health thing. The nurse from the hospital called the pharmacy that we were working with, and they told her both times, the service had been outsourced, and that this time they'll send one of their own nurses.
Sigh.
So, we'll try it again.
I have friends who really love their Home Health nurses. They get the CBC the day before, and leave the port accessed, so they don't even have to get accessed at the clinic. It probably makes clinic visits SO much faster! I would really love it if we can get it to work out. So, I'm crossing my fingers that today is the day.
If I can find the time (I work for 14.5 out of 24 hours, starting at 4:30) I'll update the blog tonight or tomorrow to let you all know how it went.
In the meantime, please keep poor little Matthew in your thoughts! I hope the reason he's so sleepy is because he needs a blood transfusion, and not that he has some sort of infection. I hope the port access goes smoothly, and isn't traumatizing to him.
I hope the nurse can become my new best friend, and I can be converted to Home Health fandom!
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