Ella is scheduled to undergo tests and reviews by medical staff for her suitability as a donor. I feel so guilty that Ella is coming down to the hospital for a visit and winds up being tested for something else. She;ll eventually not want to come.
My guilt is two fold, as I fell so happy that we are lucky enough to have a suitable BMT match for Harrison, as many families don't and then wait for a donor or search family members for a partial match. On the other hand there was the guilt of making the decision to have Ella donate and put her through the pain of a bone marrow aspiration ( where they collect the bone marrow from her hip bones).
I feel so confident that we can retell this story to all the kids in years to come and help them all to realise how important they are and how much we love them for going through the testing and then the operation for Ella, to help save Harrison's life.
Once the initial confirmation was in there were more detailed blood tests that had to be done to confirm blood grouping, for both Ella and Harrison. This tests will take a week to come back.
It is now the 30th June and we are full swing into doctors reviews and just waiting on the blood tests results to come back for the confirmatory tissue typing.
Unfortunately Harrison develops a problem with his eyes. He has a rapid up and down eye movement start to develop.
The neurology and Opthamology teams are called in. They confirm that this eye movement (pendular nystagmus) is uncommon- but is known to be linked to ADA deficiency.
More tests, are ordered, including an EEG to monitor his brain activity when the eye movements happen, and a hearing test, as he doesn't seem to respond well to sound when prompted. They also dilate the eyes to look into the eyes to see if there is any inflammation.
The EEG is clear, no signs of epilepsy causing the movements, but the hearing teat ( Similar to the newborn screening test) is failed. Then the Opthamologist notices that Harrison's retina pigmentation is patchy. He also has a squint ( turned out eye).
A second hearing test is scheduled and the doctors confirm that Harrison has Retinitis Pigmentosa.
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