It has been almost 5 months since her transplant and life is almost like "normal."
Since we stopped going to the hospital for her IV antifungal, CLARA HAS STOPPED VOMITING! She was previously vomiting every morning at least once and as many as 4 times in a day. It was really tough not knowing what was causing it but assuming it was general nausea that was probably aggravated by having the NG tube. This was one really, really, big thing that Alan left out of his last post which has put us into the realm of normal life for the past month.
We are loving only going into the hospital once a week now to check her blood product production, general chemistry, and her prograf level (one of her two immunosuppressants). And of course the doctors take a look at her physically and discuss any concerns I have about her currently and the plan going forward. It is amazing how many questions and concerns we still have. My conversations with them easily last a half hour each week. How nice to only be at the hospital for an hour rather than 3-5!
This coming Monday Clara will have her (hopefully) last MRI/CT of the areas of her body which were once infected with the aspergillus. We will be checking to confirm that the fungus didn't return since we stopped the IV antifungal 7 weeks ago. She is still getting good antifungal coverage orally but it is more of a prophylaxis for all fungi in the environment rather than a drug targeted to treat her aspergillus.
As Alan discussed in his last post, if the scan is clear, we will begin the check list to make sure we can still draw blood from Clara's veins, and that they are strong enough to maintain a catheter IV line for her monthly infusions of IVIG. If that is all well and good, her central IV line in her chest will be scheduled to be removed! Freedom! I can't wait to be able to take this girl longer than 20 minutes away from the hospital! She still can't really travel, fly on an airplane or anything of that sort, but we could take a day trip to Napa or San Francisco, etc. Yippee!
More to come soon!
1 comment:
So happy!!!
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