Thursday, June 4, 2009

As far as evenings go, we've had better

I spent today at home with B, my mother's housekeeper, who is a wonderful person and has taken care of our family for over 20 years. She did a lot of cleaning, which prompted me to do some organizing and help with cleaning as well. Since our house isn't a total disaster, we did a bit more than half of what needed to be done and left some for tomorrow.

We had a later breakfast and worked through what would have otherwise been lunchtime. We went to the hospital around 3, as B hadn't seen The Boy in over a year. He had just had a giant poo and everyone arrived at that time, so it was rather convenient. Beyond that, he was very playful and fun at that time. My aunt also stopped by, and I accompanied her to the grocery store. When I returned, The Boy was in less of a happy mood. Not long after that, they brought his Cozaar, and then the fun started.

The Cozaar was previously given as a very small pill, which we would give in yogurt or something along those lines. Precisely, it was half a pill. Then the nephrologist upped the dose a little bit, because of some increased protein in the urine. Except she didn't raise the dose to anything that is easy to break up. Yesterday's nurse, after seeing him complain about the compounded syrup medicine that they sent in place of a pill, said that she'd pass along the word that we'd much prefer a pill, and that she would mix it a certain way in juice so that she could measure it the right way and, furthermore, we'd have the rest of the pill as extra in case he spit it out.

No one got the message. The syrup was given in little increments the same way that his Hydralazine is given. Not even halfway through, the puking started. No dice on the Cozaar syrup.

He was agitated. He was sad. He is clearly uncomfortable. His blood pressure was good for most of today but a bit higher this evening. He has been puffy for days. He is also getting blood (red cells) today, which has never happened that he'd get anything in the middle of chemo. He still has one more chemo dose to go.

I didn't realize exactly how much fluid he is retaining. It's frightening. A decent weight on him, before this stay, is 11.2 kilograms (which is 24.6 pounds). He has been weighed a few times (and is to be weighed every day for now) and he's at 12.6 kilos. 27.7 pounds. Ladies and gentlemen, my son has three pounds of extra water in his body. Fortunately, they have given him Lasix. He got it before getting blood and will get it again after. Lasix is a diuretic. So he'll be peeing extra for awhile.

Grandma just called--he is very settled and relaxed. His breathing is better too. He had something going on where he was grunting a bit, and not comfortable. She also said that he looks better.

He had a few instances of blood in his urine. Not anything visible to us, but they test every time--that's what the cotton balls are for. His most recent urine test did not have blood in it. So that's good news too.

We are waiting to see if one of the pediatricians on the floor will order an abdominal X-ray. Lungs are clear, thankfully, as sometimes they will get "wet" from retaining water.

I guess it was just a very stressful afternoon and evening. The social worker from Chai Lifeline also stopped by. She's very nice. The whole organization is wonderful.

It's a weird balance, as I said in my last post, with the fluids and the swelling versus the potential damage from this chemo. I think that they decided that the stress from the swelling was just too much for him, so they are giving him the diuretics awhile after the chemo is done, rather than risk him being dehydrated before getting it. Hopefully he'll look a little less like a Sumo wrestler tomorrow. Poor guy.

We still love him so much and just want him to be well. Still hoping for no more complications. He's a sweetie boy.

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