Katie finally got an appointment with Dr. Wood, an allergist at Johns Hopkins on Friday afternoon. The appointment was going to be for, amongst other things, a back allergy test, where basically they cover your back with about 50 different substances to ascertain which things she would be allergic to. Kate wasn't thrilled at the thought of enduring this one. His office had called to confirm the appointment Wednesday and informed us to stop the Benedryls for Hannah immediately - we were giving her between 4-6 each day to help her out. So by Friday afternoon, her arms and legs were covered with the rashes and hives and had turned a blueish/purple tint around the hives. As soon as they saw her, they cancelled the back test, as they didn't think that would be necessary at that point. Lo and behold, Dr. Wood agreed with our parental intuitions that this was probably the result of Hannah's body reacting to the blood transfusions she got during and after her surgery. He said that even though the blood type was correct that Hannah was given, i.e. the same as Hannah's, there are proteins within the blood that your body can treat as foreign invaders. He stated that if the rashes and hives were the result of the blood transfusions, the body would correct itself after 6-8 weeks. We're at the 5 week mark since her operation, so perhaps we have 3 more weeks of this. He gave us two medications to help manage the rashes and make Hannah more comfortable - they seem to be working as her hives have lessened the last few days. He said that if the rashes don't disappear after the 8 week mark, that they would need to do a blood test that would definitively show what the cause of the rashes were. He also recommended us to see Dr. Levey at Kennedy Krieger, whom we have seen previously, about her low blood pressure and discoloration in her legs. Katie left the meeting relieved that at last she talked with someone who could somewhat explain the rashes and hives and their cause. Thus, Hannah is feeling and looking better this weekend and that helps our stress levels and our moods.
We hope everyone has enjoyed the wonderful weather this weekend.
With love,
Tim Katie Carly and Hannah
3 comments:
If there were an Olympic competition for parental intuition, the Larkin family would surely bring home the gold. Knowing Hannah is feeling better makes all of us feel better too. May week 6 be filled with more sunshine, fewer hives, and definitely fewer doctor visits.
Sweet dreams,
the Rubins
Ditto to the Rubin's comments! So glad you got some explanations and medication changes. Just having information sometimes helps the ability to endure the hardship! You guys are so good and pushing until your parental concerns are acknowledged and addressed. I am so impressed with you. In your spare time a year or so from now when Hannah is completely recovered and you have relaxed and recovered and become bored (can you imagine?) you need to write a book! I saw a piece in the Washington Post today about a couple who kept daily notes through a very long health crisis which thankfully ended happily. They wrote a book to help others deal with doctors, diagnosis, mdical terms and conditions, etc. So get ready--Carly, Tim and Katie may be our next budding authors! In the meantime, know I continue daily prayers for health, healing, peace and strenght for each one of you. Please let me know when I can bring a meal, provide a ride, pick up meds, groceries, or just come over and "listen". Love ya much! Barbara P.
You are such wonderful parents and so tuned in! Thank Goodness! LOVE the picture!
XOXOXO
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