I'd like to post that Izzy has improved or that the doctors have
found the problem so that, at the least, they can ease her pain. I
can't post that.
Izzy has stabilized to a certain extent in that she doesn't
appear to be losing more weight. She's still not eating much though
and the pain is always there. There are times when she cannot bear
the pain though. She is absolutely in the worst pain when she
vomits. The vomiting comes and goes, but a pattern is beginning to
emerge related to the excessive bouts of vomiting.
The ultrasound of Izzy's abdomen came back unremarkable. The doc followed that up with a series of abdominal x-rays, which came back showing quite a bit of stool. Of course, the GI nurse's first thought was Izzy must just be constipated. Izzy proved them wrong on that front and continues to have the pain and associated vomiting. Unfortunately, the GI doc has told us to go back to cardiology. Why does it always feel like Izzy is a tennis ball in a long rally of a doubles match between her specialists? Let's hope that none of them get a chance to spike her.
As I mentioned, we have seen a small pattern emerge with regard to the excessive vomiting. We originally thought it had to do with her eating so late at night, but may be more related to fatigue. The first time Izzy vomited for several hours was the night after the first day of camp. She had been very active and doing a lot more than she was used to and the night ended very late. The second time she vomited for hours followed a day where she had a field trip, playing mini-golf and walking the course in the heat without breaks.
Yesterday, Izzy spent her day partying and doing this:
This morning, Izzy was in extreme pain with a ton of vomiting. Even after she rested and hours had passed, she got purple lips and gums and was just worn out. She took a two hour nap after she had slept in late (Izzy rarely naps these days).
The ultrasound of Izzy's abdomen came back unremarkable. The doc followed that up with a series of abdominal x-rays, which came back showing quite a bit of stool. Of course, the GI nurse's first thought was Izzy must just be constipated. Izzy proved them wrong on that front and continues to have the pain and associated vomiting. Unfortunately, the GI doc has told us to go back to cardiology. Why does it always feel like Izzy is a tennis ball in a long rally of a doubles match between her specialists? Let's hope that none of them get a chance to spike her.
As I mentioned, we have seen a small pattern emerge with regard to the excessive vomiting. We originally thought it had to do with her eating so late at night, but may be more related to fatigue. The first time Izzy vomited for several hours was the night after the first day of camp. She had been very active and doing a lot more than she was used to and the night ended very late. The second time she vomited for hours followed a day where she had a field trip, playing mini-golf and walking the course in the heat without breaks.
Yesterday, Izzy spent her day partying and doing this:
This morning, Izzy was in extreme pain with a ton of vomiting. Even after she rested and hours had passed, she got purple lips and gums and was just worn out. She took a two hour nap after she had slept in late (Izzy rarely naps these days).
I don't know if this means anything, but we've been desperate to
find some pattern so that some doctor, any doctor, can figure out
the problem and help Izzy. She felt so miserable this morning and
in so much pain, she told us that she didn't want to be Izzy any
more. She declared that life is too hard. Unfortunately, this is
not the first time she's said this. We can usually help her see
that these moments will pass and that we are trying to find her
help, but it is getting harder and harder because the pain is
relentless, even for a child who has not known a day without pain
her entire life.
I will be calling cardiology again tomorrow since we were lobbed back there. Not that we ever left cardiology. I've been in constant contact with them over the last several weeks since Dr. Cutler has been increasing Izzy's digoxin levels to get her to a therapeutic dose. (Another bonus for Izzy--weekly blood draws for this.) Maybe Dr. Cutler can make sense of all of this, especially when we add in Izzy complaining of extreme chest pain radiating out to under her arm on Wednesday, followed by extreme lethargy and shortness of breath (of course, I took her to the doctor, but by the time she was seen, all seemed well).
Anyway, that is how Izzy is doing. Well, I guess if you asked her, at this moment, Izzy would say she is doing okay or she'd give you a thumbs up--her signature response. She is currently playing her Nabi, listening to music, and getting her army (hizentra/immunoglobulin infusion), while drinking homemade strawberry lemonade (with miralax).
And in a world full of pokes, medicines, and pain, that is a good way to spend an evening.
Thanks for checking in on our girl,
Mel
I will be calling cardiology again tomorrow since we were lobbed back there. Not that we ever left cardiology. I've been in constant contact with them over the last several weeks since Dr. Cutler has been increasing Izzy's digoxin levels to get her to a therapeutic dose. (Another bonus for Izzy--weekly blood draws for this.) Maybe Dr. Cutler can make sense of all of this, especially when we add in Izzy complaining of extreme chest pain radiating out to under her arm on Wednesday, followed by extreme lethargy and shortness of breath (of course, I took her to the doctor, but by the time she was seen, all seemed well).
Anyway, that is how Izzy is doing. Well, I guess if you asked her, at this moment, Izzy would say she is doing okay or she'd give you a thumbs up--her signature response. She is currently playing her Nabi, listening to music, and getting her army (hizentra/immunoglobulin infusion), while drinking homemade strawberry lemonade (with miralax).
And in a world full of pokes, medicines, and pain, that is a good way to spend an evening.
Thanks for checking in on our girl,
Mel
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