Flashback 4 - Two and a Half Days

Post date: Nov 9, 2009 3:28:52 AM

With Halloween just passed, I am remembering last year’s Halloween and I guess it’s time for another Flashback posting from our 1st 9 months with Connor before this site was created. Read the 1st, 2nd, and3rd installments, if you haven't already.

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After leaving the hospital in late September flush with IV fluids and fresh red blood cells, Connor returned to form at home. He refused to consume more than 1½ to 2 ounces maximum per feeding, and that was if we were lucky enough to get him to eat at all. After the feeds, he would frequently wretch and throw up what little he had eaten. Besides that, he continued to be the happy, good-natured 4-month old he had always been–cooing at us and smiling and laughing frequently.

The lack of fluids he was keeping down eventually caught up with him though. He was re-hospitalized on October 28, 2008 for dehydration and acidosis. I took him in to the hospital on my own while Dad stayed home with Big Brother. We figured we could trade off later and one of us needed to be home to try to reserve some energy for a later shift change. However, it ended up being a short stay. I remained with him for the 2 ½ days it took to pump him full of IV fluids and get another transfusion of red blood cells. Dad stayed home with Big Brother. We were released home in time for Halloween.

I was able to take Big Brother trick-or-treating while Dad stayed with Connor to pass out candy. I had bought a costume for Connor, but after all the transfusions he had received we figured he would make a good little vampire. A friend of mine sewed a wonderful costume for Connor with a vest and a fabulous red-lined black cape. The collar even stood up like a good vampire cape should. Big Brother was another bad guy, dressing up as Darth Vader. They both looked like adorable bad boys.

We came home from the hospital with new orders. We started administering Epogen shots twice a week. This (very expensive) medication can cause a boost in red blood cell production and we were hopeful that it might decrease Connor’s dependency on transfusions. We had our first visit from Home Health and a nurse, Amanda, came to the house over several visits to show us how to give the shot and verify that we could do this safely. We started to do this on our own in the evenings as the weather turned cooler and November began.While in the hospital, Connor’s metabolic geneticist stopped by. My genetic test results had returned. Earlier in October after we got confirmation of Connor’s Pearson Syndrome, she had suggested that I be tested “just in case”. As I mentioned in Flashback 3, most cases of Pearson’s Syndrome are considered “de novo” events where the mutation occurred when the egg was formed and no other family members have a related illness. However, there has been one documented case where the mother had a mitochondrial illness that was passed on to her child, who had Pearson’s. In my case, the test results came back normal; I had no signs of mitochondrial deficiencies. This supports the theory that Connor's mitochondrial deficiencies are due to a chance occurrence and it is unlikely that other family members or future children will have Pearson's.