The clinic visit yesterday was a lot worse than I expected it to be. The plus side is...she is off IV meds and on a strong oral..but only for a few days. He is waiting on her culture results to come back to decide what to put her on. I am sad to say, that is the only plus to the whole visit. He thinks she is culturing one of the big bugs..if the culture results come back not showing anything, he will put her in for a bronch and see what is going on.
He said it is imperative we get to Cincinnati ASAP..he feels we will not see any improvement until we go...that is based on them being able to help her...if not...he said he doesnt know why some cf patients have it worse off than others but we just have to do what we can...I told him it wasnt as easy as all that from where I was sitting. I felt like I was kicked in the gut.
Please pray they get all the details worked out with insurance and scheduling and we have the resources needed to go to Cincinatti.
Thank you,
Debbie
Showing posts with label Cincinnati Childrens. Show all posts
Showing posts with label Cincinnati Childrens. Show all posts
Sunday, April 18, 2010
Thursday, January 7, 2010
The other shoe dropped....HARD!!
We got home last night (Tuesday). I thought I would just wait to update until after we went to Chey's local CF doctor today.
Cheyenne's PFT's came up 10% since they opened the bronchus back up. Dr. C said she can stop the IV's, at least for a few days, to see how she does. Her cough is increasing again, but he wants to wait and see if it is just because of the procedure she had done. He also said she can go back to school on Monday. She is so happy about that since she hasnt been since the 1st of December.
Doc also said he had a long talk with the surgeon in St. Louis on Monday. They were both discouraged because of the condition of the bronchus. Apparently, it was totally closed off and in light of the new developement, they both feel, Cheyenne will need major surgery to see if they can correct some of the damage that is causing all this problem. Neither of the two docs are able to do this surgery, so local doc will be in contact with Cincinnati Children's, to see if someone there can help her.
Two weeks ago, one shoe dropped with the discovery of the hypertension/heart thing. Today, the other shoe dropped...along with my heart.
One year ago today, Cheyenne got a port. At the time, I thought that was a very bad thing. I stand corrected.
Cheyenne's PFT's came up 10% since they opened the bronchus back up. Dr. C said she can stop the IV's, at least for a few days, to see how she does. Her cough is increasing again, but he wants to wait and see if it is just because of the procedure she had done. He also said she can go back to school on Monday. She is so happy about that since she hasnt been since the 1st of December.
Doc also said he had a long talk with the surgeon in St. Louis on Monday. They were both discouraged because of the condition of the bronchus. Apparently, it was totally closed off and in light of the new developement, they both feel, Cheyenne will need major surgery to see if they can correct some of the damage that is causing all this problem. Neither of the two docs are able to do this surgery, so local doc will be in contact with Cincinnati Children's, to see if someone there can help her.
Two weeks ago, one shoe dropped with the discovery of the hypertension/heart thing. Today, the other shoe dropped...along with my heart.
One year ago today, Cheyenne got a port. At the time, I thought that was a very bad thing. I stand corrected.
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