8/19/10 MRI
Update
On Monday Josie had her MRI - all went well. They ended up sedating her which meant she needed an IV and a breathing tube. I was taken a little off-guard when they said she would need a breathing tube. They wanted to safeguard her airway while under sedation and also the fact that she would be far away in the tube if something did happen. We were fine with that scenario once it was explained, but also concerned because the last time she had the breathing tube removed, she had "strider", which is what makes her voice sound scratchy. She did just fine though and only had a little scratchiness right after it came out and then it cleared up.
The appointment with the Neurosurgeon went very well. The MRI showed that Josie's brain which was squished over to the left by the tumor was now back to the center. Very good sign! As for the tumor growth, the doctor did not believe it to be growing. The tumor did look different, but he said it is probably folding in on itself because he took the center out in the first surgery. He was very pleased with her progress and how well she is healing. YEAH! Josie has another MRI in one month. Not sure if this will be a monthly process, but the doctor would like to watch this tumor carefully and if possible, get her to 6 months old before the next surgery. We are very pleased with this report.
As for other updates, we are in the process of getting another specialist involved in Josie's care. No one was really "in-charge" of her feeding tube, so now we will be meeting with a GI doctor or specialist that will direct what happens with her feedings and reflux issues. To this point, these 2 things have been the items that have caused us the most concern, so we are glad to have someone stepping in to help Josie.
The rash has pretty much dried up and our conclusion is that she has normal baby "cradle cap" and due to the steroids in her system, they flared up into the rash instead of showing up as just dry scaly scalp. That is not an official prognosis, but it seems to fit with everything that we have been told.
It has been really nice the last couple of days - we are actually home without any appointments - maybe this is a a glimpse at the "new" normal.
Blessings to all...
Darcia & Marc
On Monday Josie had her MRI - all went well. They ended up sedating her which meant she needed an IV and a breathing tube. I was taken a little off-guard when they said she would need a breathing tube. They wanted to safeguard her airway while under sedation and also the fact that she would be far away in the tube if something did happen. We were fine with that scenario once it was explained, but also concerned because the last time she had the breathing tube removed, she had "strider", which is what makes her voice sound scratchy. She did just fine though and only had a little scratchiness right after it came out and then it cleared up.
The appointment with the Neurosurgeon went very well. The MRI showed that Josie's brain which was squished over to the left by the tumor was now back to the center. Very good sign! As for the tumor growth, the doctor did not believe it to be growing. The tumor did look different, but he said it is probably folding in on itself because he took the center out in the first surgery. He was very pleased with her progress and how well she is healing. YEAH! Josie has another MRI in one month. Not sure if this will be a monthly process, but the doctor would like to watch this tumor carefully and if possible, get her to 6 months old before the next surgery. We are very pleased with this report.
As for other updates, we are in the process of getting another specialist involved in Josie's care. No one was really "in-charge" of her feeding tube, so now we will be meeting with a GI doctor or specialist that will direct what happens with her feedings and reflux issues. To this point, these 2 things have been the items that have caused us the most concern, so we are glad to have someone stepping in to help Josie.
The rash has pretty much dried up and our conclusion is that she has normal baby "cradle cap" and due to the steroids in her system, they flared up into the rash instead of showing up as just dry scaly scalp. That is not an official prognosis, but it seems to fit with everything that we have been told.
It has been really nice the last couple of days - we are actually home without any appointments - maybe this is a a glimpse at the "new" normal.
Blessings to all...
Darcia & Marc
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