The Boy's blood pressure started climbing up again around lunchtime today. Even though he took his medicines as he was supposed to, he still had high readings and needed a dose of rescue medicine. He will be getting 6 mL of Hydralazine instead of 5 mL when he gets it. I am speculating that they don't want to add any more ACE or ARB meds because the potassium is still a concern.
He did get the blood yesterday, and usually right after he gets blood, his BP reading is high. Obviously, because he is getting all this extra stuff pumped into his body. Thinking about it, I don't know if it stays high for a day after a transfusion, because we haven't been doing BP at home for that long that we'd know if BP was staying high for that long after a transfusion, but his numbers were fine overnight and in the morning, Grandma reports.
One of the oncologists was also in this afternoon. He is the head of the group and so very nice. He marveled at The Boy eating an apple like a grownup. Grandma said something about hoping that The Boy will get to grow up, because that's been on our minds these days. He said that he feels it, that The Boy will in fact be growing up. That's good to hear, because his feelings are colored by his professional experience. It doesn't so much mean that based on The Boy's current medical status that he is giving us a definite answer about long-term health, but I think that since he has dealt with many many many children with cancer and other related health problems, he probably has seen enough of them go through what The Boy is going through and has seen them come out on the other side.
Laundry is in progress right now. Had my mother not brought me a new pair of shorts and two shirts, I would not have had an acceptable outfit to wear today.
Today was Musical Daddy's brother's birthday. He was given a surprise party with just family present, at their father's house. And before he knew about it, he was MAD, because he thought that everyone had forgotten his birthday and that his father was just getting on his case and didn't have any time for him on his birthday and blah blah...he was grumping and ticked off and whatever else, making the excitement of being surprised by his family with an amazing steak dinner and cake and presents that much more rewarding.
Would have been lots of fun to have The Boy there. And he would have been excited about the steak for dinner. Filet mignon, to be precise. We did bring him some, but Grandma mentioned that he had thrown up a bit this afternoon, so steak wasn't a good idea.
I'm worried, a bit, about him. He doesn't throw up too frequently. Even as a chemo patient. Sometimes he gets something that goes down the wrong way when he is eating and a bit comes up. Sometimes he feels a little queasy from chemo. Usually during and after chemo he gets Zofran, which, hopefully, is doing its job. I try to wean him off of it as soon as it doesn't seem he'll need it.
Also, the blood pressure was under control for...well...a week. Not exactly a ringing endorsement but still means that there is a possibility that something else is going on.
Let's hope that it's not too much.
Saturday, May 30, 2009
Found Money
My parents had a fire in their house last fall, and they are finally almost finished putting everything back together again. The fire was confined to the downstairs--the kitchen and the family room mostly--but smoke filled the house so everything had to be taken out so that things could be cleaned.
The upstairs "sunroom" was a holding cell for all sorts of assorted junk. Old documents, pictures, books, and generalized nonsense. And one of the things that my mother found were four savings bonds of mine, $50 each. I was excited to be getting an extra $200. Then I went to calculate the values online and they are actually worth a total of over $400.
This extra money was brought to us by the Department of Disorganization and Inefficiency. Thanks!
The upstairs "sunroom" was a holding cell for all sorts of assorted junk. Old documents, pictures, books, and generalized nonsense. And one of the things that my mother found were four savings bonds of mine, $50 each. I was excited to be getting an extra $200. Then I went to calculate the values online and they are actually worth a total of over $400.
This extra money was brought to us by the Department of Disorganization and Inefficiency. Thanks!
Friday, May 29, 2009
What's going on
Likely, chemo will be starting on Monday. They still don't know exactly what the infection is. The oncologist is hoping that the infection can be treated with a different medicine than Vancomycin, because it would be better for the kidney.
Ah, yes...the kidney.
I also learned something very important today. I don't know why I didn't get this before. Basically, this infection and the last one seem to be from the bacteria living on The Boy's body. We all have it. But it can get in through his port. Or through his mouth. Or whatever. And with low immunity, he can't fight it off well enough. Possibly, those times when he has had fevers for an hour that went away were these infections that didn't stick around long enough to be treated. Every time he has been sick..it is from himself. We have done a great job of keeping him from other's infections. But if something is just on him, then that's the breaks.
I truly hope that this is just an unlucky streak and that our lives are not going to be like this all the time.
The Boy took his medicine again for the nurse. She had him sitting up and was holding him under the chin. She gave him something to do, pushing buttons on her calculator. And she gave 1 mL at a time, leaving the syringe in his mouth, telling him to swallow and waiting as long as necessary. She was very stern with him but not mean, and she got it to work.
The Boy is also getting blood again. Some of this is due to IV fluids diluting everything. Mostly, it is his body using up resources to fight infection. So we are waiting on that.
So that's about that.
Ah, yes...the kidney.
I also learned something very important today. I don't know why I didn't get this before. Basically, this infection and the last one seem to be from the bacteria living on The Boy's body. We all have it. But it can get in through his port. Or through his mouth. Or whatever. And with low immunity, he can't fight it off well enough. Possibly, those times when he has had fevers for an hour that went away were these infections that didn't stick around long enough to be treated. Every time he has been sick..it is from himself. We have done a great job of keeping him from other's infections. But if something is just on him, then that's the breaks.
I truly hope that this is just an unlucky streak and that our lives are not going to be like this all the time.
The Boy took his medicine again for the nurse. She had him sitting up and was holding him under the chin. She gave him something to do, pushing buttons on her calculator. And she gave 1 mL at a time, leaving the syringe in his mouth, telling him to swallow and waiting as long as necessary. She was very stern with him but not mean, and she got it to work.
The Boy is also getting blood again. Some of this is due to IV fluids diluting everything. Mostly, it is his body using up resources to fight infection. So we are waiting on that.
So that's about that.
Thus far, a better day
The Boy was lounging around when I arrived to send Musical Daddy off to work. He was just fine. Good night and good morning, and we are content.
Except that Elmo is taking a break and The Boy isn't too happy...but then he got over it when he found my keys.
On medicine: the nephrologist would like to see him taking Cozaar and less Hydralazine. Cozaar will also help with the protein in the urine. I talked with her this morning and expressed my frustration. She does have kids, by the way, and she said that her kid gave her trouble with meds too (although he is not chronically ill). We tried Hydralazine as a crushed pill. Fail. It is a bit bigger and, more to the point, it is bright orange. You can't really hide this stuff. Mix in his yogurt, and spit. So the nurse gave him the liquid a little while after breakfast. It was a somewhat involved process, and I actually left the room. She apologized to me, saying that she had to be a taskmaster about it and that isn't even her style. And she'd hate if someone had to do that to her kids. Her son is the same age as The Boy, like within weeks, so she knows the age. I told her that it makes me sad but that he has to take the meds, and now that we have a jumping-off point, we can work with it. I prefer a relatively quick delivery when unpleasantness is involved, as do most people. Cuts down on the therapy bills.
He was about to fall asleep when he had to take his medicine and, unfortunately, has still not visited dreamland almost two hours later.
He is thinking about it. Unfortunately lunch is in half an hour. Timing...
Except that Elmo is taking a break and The Boy isn't too happy...but then he got over it when he found my keys.
On medicine: the nephrologist would like to see him taking Cozaar and less Hydralazine. Cozaar will also help with the protein in the urine. I talked with her this morning and expressed my frustration. She does have kids, by the way, and she said that her kid gave her trouble with meds too (although he is not chronically ill). We tried Hydralazine as a crushed pill. Fail. It is a bit bigger and, more to the point, it is bright orange. You can't really hide this stuff. Mix in his yogurt, and spit. So the nurse gave him the liquid a little while after breakfast. It was a somewhat involved process, and I actually left the room. She apologized to me, saying that she had to be a taskmaster about it and that isn't even her style. And she'd hate if someone had to do that to her kids. Her son is the same age as The Boy, like within weeks, so she knows the age. I told her that it makes me sad but that he has to take the meds, and now that we have a jumping-off point, we can work with it. I prefer a relatively quick delivery when unpleasantness is involved, as do most people. Cuts down on the therapy bills.
He was about to fall asleep when he had to take his medicine and, unfortunately, has still not visited dreamland almost two hours later.
He is thinking about it. Unfortunately lunch is in half an hour. Timing...
Thursday, May 28, 2009
More meds
He had a high BP this evening, right after fighting me about his meds. Later, it was okay. Still, now he is back on Cozaar, but they didn't say so until 9. The medicine still isn't here. Of course, I had brought it yesterday but didn't leave it here. My fault. I was trying to keep him awake. He is sleepily whining at "Goodnight Moon" because it isn't Elmo.
I am annoyed. I hope that the confidentiality in the hospital includes the things that parents say to nurses about doctors. Not that it was do bad, what I said. I just asked if the nephrologist had any kids. Implying that she didn't seem to know anything about them.
I am annoyed. I hope that the confidentiality in the hospital includes the things that parents say to nurses about doctors. Not that it was do bad, what I said. I just asked if the nephrologist had any kids. Implying that she didn't seem to know anything about them.
Crankiness quotient
At least three times a day, The Boy gets Benadryl before getting Vancomycin. It makes him either tired or cranky, and he is more prone to fit-throwing and general contrary behavior. One of these is overnight, so it isn't an issue. Then he gets his Hydralazine three times a day, but this one is just spaced out during waking hours. He is obnoxious when being given this medication and I waste as much as I give because he spits it out, as I described. He is really good at spitting out medicine.
Between that and the time he spends sleeping, it doesn't leave much time where he is even remotely himself. That's one of the sadder aspects of this current ordeal, because so much of what gets us through his treatment is his sweet nature and good behavior. He doesn't get to act like himself much under these circumstances. It also tries my patience and I get upset.
Both last week and this week I have needed to call on Musical Daddy to rescue me and help me resolve a major issue with The Boy. I have a feeling that his acting not like himself will end up being normal for him and the sweet boy that we know will be just a fleeting fantasy if things continue as they have been. I hope I am wrong.
I know--get over it, the "Terrible Twos" are coming. Well, no. It isn't "Terrible Twos." It is a product of being dehumanized by constant medical involvement. Don't worry, I won't do like that mother in Minnesota who isn't having her kid treated for lymphoma. I can get behind her seeking alternative treatment but it didn't work...anyhow, not on that right now. Point is, the treatment and frequent medication is what is causing his behavior to change, and it upsets me.
I don't want to spend my energy getting upset with someone who doesn't know enough to care. I have been amazingly patient and compassionate, and I love him so much. I want to do what is best for him.
And, selfishly, I want to do all I can for him and see him live long and be healthy...so that I don't feel like we went through all this only to lose him anyway.
Yes, it has come up in more than one conversation.
Between that and the time he spends sleeping, it doesn't leave much time where he is even remotely himself. That's one of the sadder aspects of this current ordeal, because so much of what gets us through his treatment is his sweet nature and good behavior. He doesn't get to act like himself much under these circumstances. It also tries my patience and I get upset.
Both last week and this week I have needed to call on Musical Daddy to rescue me and help me resolve a major issue with The Boy. I have a feeling that his acting not like himself will end up being normal for him and the sweet boy that we know will be just a fleeting fantasy if things continue as they have been. I hope I am wrong.
I know--get over it, the "Terrible Twos" are coming. Well, no. It isn't "Terrible Twos." It is a product of being dehumanized by constant medical involvement. Don't worry, I won't do like that mother in Minnesota who isn't having her kid treated for lymphoma. I can get behind her seeking alternative treatment but it didn't work...anyhow, not on that right now. Point is, the treatment and frequent medication is what is causing his behavior to change, and it upsets me.
I don't want to spend my energy getting upset with someone who doesn't know enough to care. I have been amazingly patient and compassionate, and I love him so much. I want to do what is best for him.
And, selfishly, I want to do all I can for him and see him live long and be healthy...so that I don't feel like we went through all this only to lose him anyway.
Yes, it has come up in more than one conversation.
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