Yes, we spent another holiday at The Children's Hospital of Philadelphia!!! (Our first visit was over the new year.)
It started on Wednesday, when we went to the pediatrician for our weekly blood pressure and weight check. Since starting the ACTH, I have had to check Emily's glucose levels in her urine. They had always been fine, until this past weekend when the test strip registered her glucose at the highest level on the chart! So, while at the pedi's office, they checked her sugar level with a heel prick. It was over 500 twice (it should be around 100!). The pediatrician called Emily's neurologist right away and they decided we should come in right then. (Thank you to Grandmom who was helping on Wednesday and watched Drew, Carter, and Brenna while I was gone.)
Off to CHOP we went. Unfortunately, we had to go through the ER and the wait was about an hour and a half before they took us to a room. We were in that ER room from about 4pm until 10 pm when they admitted us to an overnight room back in 7west (neurology). We actually got the room right next to our room from last visit. Unfortunately, again, our roommate was a little one with a serious cough and infection of some kind that made him vomit often. Apparently there is a rule, that as long as you are three feet away from the other patient, you can share the room. Although any doctors or nurses coming in had to wear masks and gowns and I had to walk by them everytime I left or entered the room for something. And we shared the same trash can and soiled linens bin, ugggh! I washed my hands a ton and am hoping we'll avoid coming down with anything. Last visit, Emily caught a cough - which went through the whole house of course!
But back to the reason for our visit. The neurologists had to confer with the endocrinologists about how best to handle the situation. They decided it is time to take Emily off of the ACTH. She has to be weaned slowly, which we were already starting to do, but are now doing faster. While she is weaning from the steroid, she will need insulin injections (there is no oral insulin) to keep her sugars stable.
Before we could leave I had to be taught how to use the glucometer to test her sugar levels several times a day, and then another "class" to learn how to give the insulin injections. So now, between the ACTH and the insulin, Emily could need up to 4 shots a day!
So far, she has not needed all of her insulin injections (there is a certain number below which we do not give it) and her levels have been mostly ok.
She seems happier already and is sleeping better (yeah!) - now going 4 hours or more at night instead of 2-3 hours only. She used to sleep from 9 -7 before the spasm ever started. Eventually we will sleep again, right?
Her treatments of both ACTH and insulin should be finished in about 2 weeks. The high blood sugar problems should go away once she is no longer taking the steroid. She responds well to the insulin when she needs it, so that is a good sign.
Emily is so brave and has been a real trooper through all of the poking and prodding. She had another IV at the hospital, and her poor little feet are all marked up with pin pricks on her toes and heels. She gets the ACTH in her thighs and the insulin in her arms and buttocks. Her face is all puffy from being on the steroid for almost 7 weeks now. She has gained almost 4 pounds in that time!
We love you Emily!!
It started on Wednesday, when we went to the pediatrician for our weekly blood pressure and weight check. Since starting the ACTH, I have had to check Emily's glucose levels in her urine. They had always been fine, until this past weekend when the test strip registered her glucose at the highest level on the chart! So, while at the pedi's office, they checked her sugar level with a heel prick. It was over 500 twice (it should be around 100!). The pediatrician called Emily's neurologist right away and they decided we should come in right then. (Thank you to Grandmom who was helping on Wednesday and watched Drew, Carter, and Brenna while I was gone.)
Off to CHOP we went. Unfortunately, we had to go through the ER and the wait was about an hour and a half before they took us to a room. We were in that ER room from about 4pm until 10 pm when they admitted us to an overnight room back in 7west (neurology). We actually got the room right next to our room from last visit. Unfortunately, again, our roommate was a little one with a serious cough and infection of some kind that made him vomit often. Apparently there is a rule, that as long as you are three feet away from the other patient, you can share the room. Although any doctors or nurses coming in had to wear masks and gowns and I had to walk by them everytime I left or entered the room for something. And we shared the same trash can and soiled linens bin, ugggh! I washed my hands a ton and am hoping we'll avoid coming down with anything. Last visit, Emily caught a cough - which went through the whole house of course!
But back to the reason for our visit. The neurologists had to confer with the endocrinologists about how best to handle the situation. They decided it is time to take Emily off of the ACTH. She has to be weaned slowly, which we were already starting to do, but are now doing faster. While she is weaning from the steroid, she will need insulin injections (there is no oral insulin) to keep her sugars stable.
Before we could leave I had to be taught how to use the glucometer to test her sugar levels several times a day, and then another "class" to learn how to give the insulin injections. So now, between the ACTH and the insulin, Emily could need up to 4 shots a day!
So far, she has not needed all of her insulin injections (there is a certain number below which we do not give it) and her levels have been mostly ok.
She seems happier already and is sleeping better (yeah!) - now going 4 hours or more at night instead of 2-3 hours only. She used to sleep from 9 -7 before the spasm ever started. Eventually we will sleep again, right?
Her treatments of both ACTH and insulin should be finished in about 2 weeks. The high blood sugar problems should go away once she is no longer taking the steroid. She responds well to the insulin when she needs it, so that is a good sign.
Emily is so brave and has been a real trooper through all of the poking and prodding. She had another IV at the hospital, and her poor little feet are all marked up with pin pricks on her toes and heels. She gets the ACTH in her thighs and the insulin in her arms and buttocks. Her face is all puffy from being on the steroid for almost 7 weeks now. She has gained almost 4 pounds in that time!
We love you Emily!!
2 comments:
Oh, what a stinky way to spend Valentine's Day! Hope she does well weaning off the meds! Her cheeks look like they grew overnight - pudgy babies are the cutest! Hang in there Emily!
Certainly not a fun way to spend Valentines' Day, but you definitely had a cherub with you, with cherub cheeks to match. Unfortunately your little cupid was the one getting poked with the arrows. Poor little dear :(
I am surprised that they did not provide you with a glucose meter when the ACTH treatment started. We used to take Kaylee's twice a day along with monitoring the Ketones in the AM. We used a separate lancet. The meters typically come with 25g, which can be painful when used frequently on a little one. The smallest we were able to find were 33g BD Ultra-Fine at the drug store. My dad was a diabetic, so we had the inside scoop on the glucose meter stuff. I hope all goes well with the tapering.
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