Peyton was scheduled for her eye exam under general anesthetic this morning. This has already been rescheduled once due to illness. Last night, Peyton's heart rate was running higher than normal, so it was a little concerning. She's also been a little more congested than usual. By the time I went to bed, I was already having my doubts about this procedure actually happening. When we woke up, sure enough her heart rate was even higher and she had a low grade fever. At 7:00 this morning, I was calling the two numbers I had for people who might need to be contacted to cancel the procedure. Actually, they weren't the "right" ones for the immediate need of canceling, but I figured I could leave early morning messages and hope they would be returned. I wound up calling the main line to the hospital to see if I could be transferred to the procedure area. I actually wound up speaking to a friend of mine from choir who is an operator at MUSC. He put me through to the place I needed to speak with and within a couple minutes I'd spoke to a nurse and explained why I was having to cancel, and we were all set.
Peyton's a little better now than she was this morning, but she's just not herself. I did speak with the nurse practitioner in the pulmonary clinic to get some advice. I think we're ok to just watch and wait til tomorrow to see how she is doing then. We're hoping to see an improvement by then!
As for when the procedure will be rescheduled to, I am not sure - that phone call wasn't returned!
Thursday, March 17, 2011
Friday, March 11, 2011
Update
Things have been relatively quiet here since I last posted. No sudden middle of the night trips to the ER for a clogged g-j tube, or for any other reason for that matter!!
Peyton was scheduled for an eye exam under general anesthetic a week or so ago. However, that was the day she decided to have a temp of 102. It was cancelled and moved to March 17th, so we have that to look forward to next week.
Yesterday we saw the pulmonary doctor. It went well. No big changes at all. We're just to keep on doing what we're doing as far as those antibiotics go. We did get the one antibiotic switched to a different form which has helped out immensely with the g-j tube getting clogged. We had made this switch about a week ago. I let the doctor know and he is happy that it is working out. It looks like Peyton will be staying on the antibiotics for the long haul. We go back to the pulmonary clinic in 2 months, so that's another 2 months of antibiotics. She's developing thrush in her mouth from all the antibiotics. Two rounds of oral nystatin did nothing, so she's now on another antibiotic to target the thrush. That makes me happy. I don't care much for the oral nystatin as we have to be so careful to not let any get swallowed - we use those oral swabs to swab all around inside her cheeks and tongue. Glad to be on a different form.
We went to the semi-annual "biggest waste of time" genetics appointment today. Why do I call it that?? Because the very advanced testing she had done at Texas Children's Hospital in her first two years of life (we moved here when she was two and a half) is far more advanced than anything MUSC can do. The doctor spoke for a bit and basically said, "Yeah...it's some kind of genetic disorder...." Great. Thanks. Same answer as last visit....and the visit before....and the visit before that. I really wish Peyton was well enough to travel so we can go back to TCH and see her old geneticist. Who knows, perhaps we'd get the same answer there, although so much has changed in the past year, I'm certain (based on past experience) that the doctor would be sitting with us for a long time discussing her case. It makes me wonder if there's any testing available through TCH that isn't available here. Ugh.
Disney World with Moira was fantastic!! You can read about Moira's birthday here http://fontenblog.blogspot.com/2011/03/happy-birthday-moira.html and you can view pictures from our trip here http://www.facebook.com/album.php?aid=277941&id=690215792&l=6d1cf09192
Aside from this, we're still trying to get Peyton's full 84 hours of nursing each week covered. I figured February would be a challenge since that's when the increase happened. March....well, I thought we'd have a little more coverage. Here's hoping that we're able to get closer to 84 hours in April. We're currently running about 10 hours or so short each week. We got pretty close to 84 once or twice, but generally not. We're also still waiting to hear back to see if we have continuous coverage for the end of April so Ron and I can get away for a few days. Hard to make plans when you have no clue if you'll have the coverage you asked for over 2 months ago. Makes you wonder why there was the urgency to let them know the dates we were needing coverage for.
Please keep us in your prayers. Things have been incredibly stressful and frustrating in a few areas of our everyday life. Disney was awesome, but can only imagine how much more awesome it would have been if I wasn't so completely exhausted. All I want to do is sleep. I am so tired and worn out. I feel guilty for the state of my house constantly - it looks like the people who live here just don't give a care. I care...trust me...I just have ZERO energy. I feel like I'm so far behind on sleep that no amount of napping will ever catch me up.
I will keep you posted on Peyton's eye exam next week. It should just be a routine thorough exam, although there's always the possibility that something has to be done. One never knows!!
As always, thanks for your prayers!
Peyton was scheduled for an eye exam under general anesthetic a week or so ago. However, that was the day she decided to have a temp of 102. It was cancelled and moved to March 17th, so we have that to look forward to next week.
Yesterday we saw the pulmonary doctor. It went well. No big changes at all. We're just to keep on doing what we're doing as far as those antibiotics go. We did get the one antibiotic switched to a different form which has helped out immensely with the g-j tube getting clogged. We had made this switch about a week ago. I let the doctor know and he is happy that it is working out. It looks like Peyton will be staying on the antibiotics for the long haul. We go back to the pulmonary clinic in 2 months, so that's another 2 months of antibiotics. She's developing thrush in her mouth from all the antibiotics. Two rounds of oral nystatin did nothing, so she's now on another antibiotic to target the thrush. That makes me happy. I don't care much for the oral nystatin as we have to be so careful to not let any get swallowed - we use those oral swabs to swab all around inside her cheeks and tongue. Glad to be on a different form.
We went to the semi-annual "biggest waste of time" genetics appointment today. Why do I call it that?? Because the very advanced testing she had done at Texas Children's Hospital in her first two years of life (we moved here when she was two and a half) is far more advanced than anything MUSC can do. The doctor spoke for a bit and basically said, "Yeah...it's some kind of genetic disorder...." Great. Thanks. Same answer as last visit....and the visit before....and the visit before that. I really wish Peyton was well enough to travel so we can go back to TCH and see her old geneticist. Who knows, perhaps we'd get the same answer there, although so much has changed in the past year, I'm certain (based on past experience) that the doctor would be sitting with us for a long time discussing her case. It makes me wonder if there's any testing available through TCH that isn't available here. Ugh.
Disney World with Moira was fantastic!! You can read about Moira's birthday here http://fontenblog.blogspot.com/2011/03/happy-birthday-moira.html and you can view pictures from our trip here http://www.facebook.com/album.php?aid=277941&id=690215792&l=6d1cf09192
Aside from this, we're still trying to get Peyton's full 84 hours of nursing each week covered. I figured February would be a challenge since that's when the increase happened. March....well, I thought we'd have a little more coverage. Here's hoping that we're able to get closer to 84 hours in April. We're currently running about 10 hours or so short each week. We got pretty close to 84 once or twice, but generally not. We're also still waiting to hear back to see if we have continuous coverage for the end of April so Ron and I can get away for a few days. Hard to make plans when you have no clue if you'll have the coverage you asked for over 2 months ago. Makes you wonder why there was the urgency to let them know the dates we were needing coverage for.
Please keep us in your prayers. Things have been incredibly stressful and frustrating in a few areas of our everyday life. Disney was awesome, but can only imagine how much more awesome it would have been if I wasn't so completely exhausted. All I want to do is sleep. I am so tired and worn out. I feel guilty for the state of my house constantly - it looks like the people who live here just don't give a care. I care...trust me...I just have ZERO energy. I feel like I'm so far behind on sleep that no amount of napping will ever catch me up.
I will keep you posted on Peyton's eye exam next week. It should just be a routine thorough exam, although there's always the possibility that something has to be done. One never knows!!
As always, thanks for your prayers!
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