I'm feeling much better after meeting with Dr. Sagel [the pediatrician] on Thursday and the Dr. Siomos and Dr. Howley at the Cardiac clinic on Friday. Iris has been breathing very well, though she did have a slightly elevated temperature and seems to be fighting something little. Dr. Sagel reassured us that Iris seems to be doing very well, "She looks like a healthy three-month-old. She's doing great." I think she still looks quite skinny -- and she is actually quite skinny -- but she's putting weight on fairly well.
Dr. Sagel suggested we stop fortifying her milk completely, and suggested that would help with the diarrhea she's had. She seems to have been right. She also said we should stop the Nystatin for thrush and see how Iris can do fighting it off herself. I continue to resist giving Iris the inhaled steroid Flovent but the pulmonary nurse wants to readdress this in the future. I am hopeful that Iris will be able to get by without Flovent as a daily regimen.
I'm sure other parents are all aware of this but the CDC and the WHO use differing growth charts so your child shows up in differing percentiles depending on the chart you're using. Here are Iris's records from the Children's Hospital since arriving.
The WHO [above] has Iris as being almost in the 14th percentile in the weight-for-age chart. Meanwhile, the CDC [below] has her almost in the 30th percentile. Go figure. I guess the percentile doesn't matter that much, but the trend. And her trend is clearly looking good.
We finally got a pulse ox to measure her oxygen levels at home. Getting the pulse ox involved a fairly emotive email to the pulmonary team and changing medical supply companies. We had to pay out of pocket for the oxygen set up but we continue to be under the [perhaps false] impression that we will be reimbursed by COBRA for this expense. After the appointment at the cardiac clinic it appeared she could handle coming down to 3/4L. She's been doing well on 3/4L as the pulse ox shows, which I've been checking more frequently than the doctors wanted me to do. However, in order for us to get to turn down her oxygen they said that I would need a fairly consistent record of her oxygen levels over an extended time...so I'm doing some data collection. She's been between 95-100% consistently. This would suggest we can try her on 1/2L but I'll wait till the afternoon to contact Dr. Siomos.
My mom has accompanied me to all the appointments and Evan has attended via iPhone. Mom has been particularly impressed at all our doctors who happen all to be female and to have children. Dr. Siomos has a 7-month old at home and yet she is always at the hospital. Dr. Howley has a 1-year old.
Dr. Sagel suggested we stop fortifying her milk completely, and suggested that would help with the diarrhea she's had. She seems to have been right. She also said we should stop the Nystatin for thrush and see how Iris can do fighting it off herself. I continue to resist giving Iris the inhaled steroid Flovent but the pulmonary nurse wants to readdress this in the future. I am hopeful that Iris will be able to get by without Flovent as a daily regimen.
I'm sure other parents are all aware of this but the CDC and the WHO use differing growth charts so your child shows up in differing percentiles depending on the chart you're using. Here are Iris's records from the Children's Hospital since arriving.
We finally got a pulse ox to measure her oxygen levels at home. Getting the pulse ox involved a fairly emotive email to the pulmonary team and changing medical supply companies. We had to pay out of pocket for the oxygen set up but we continue to be under the [perhaps false] impression that we will be reimbursed by COBRA for this expense. After the appointment at the cardiac clinic it appeared she could handle coming down to 3/4L. She's been doing well on 3/4L as the pulse ox shows, which I've been checking more frequently than the doctors wanted me to do. However, in order for us to get to turn down her oxygen they said that I would need a fairly consistent record of her oxygen levels over an extended time...so I'm doing some data collection. She's been between 95-100% consistently. This would suggest we can try her on 1/2L but I'll wait till the afternoon to contact Dr. Siomos.
My mom has accompanied me to all the appointments and Evan has attended via iPhone. Mom has been particularly impressed at all our doctors who happen all to be female and to have children. Dr. Siomos has a 7-month old at home and yet she is always at the hospital. Dr. Howley has a 1-year old.
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