If it’s not one thing, it’s another. Poor Jaxson just can’t catch a break. Looking back, this year hasn’t been a great one. From reoccurring line infections, to low sodium problems that landed him in the hospital every week for 2 months, and now constant anemia.
Jaxson is usually a little bit anemic, but an iron supplement twice weekly in his TPN usually helps maintain normal iron levels. Ever since his GI bleed a few months ago, he’s been battling anemia. He’s had frequent transfusions. So many that I can’t even think of an exact number. Because of all the transfusions, his iron levels are now getting to high, so despite his hemoglobin being 6.6, he wants to hold off on a transfusion since he’s otherwise doing well. 6.6 is critical and usually prompts a transfusion, by the way.
His hematologist drew labs in his office last week to test for a few different things- his folic acid levels being one of them. But because of complications from the lab with the specimens, those labs had to be drawn a third time today and hopefully we will get the results early next week. If his folic acid is low, that could be the cause of the anemia and could be supplemented in his TPN. If it and all of the other tests are normal, he will move on to have a bone marrow biopsy done. My first thought with this frequent anemia and then hearing the words bone marrow biopsy, is leukemia. But his doctor assured me that it’s probably not that, and the bone marrow biopsy will rule that out. He doesn’t have any other identifying factors anyway, so that’s reassuring. The bone marrow biopsy is a short outpatient procedure and is done under anesthesia by sticking a needle into the pelvic bone to draw out some bone marrow. I’m really hoping one of these blood tests shows the reason for anemia, because a bone marrow biopsy is just another procedure I don’t want to have to see him go through. We should know more by early next week and I can update more once I know.
Despite the anemia, Jaxson remains happy and for the most part full of energy. He’s doing well in school and in therapy and for the first time in awhile, I see him learning something new everyday. He’s also getting a sense of humor, as recently he is laughing at everything and doing things specifically for a reaction. It’s adorable. He is also starting to show more interest in toys which is AMAZING! I’m so proud of my boy. Despite all he goes through, he always remains happy. He is my hero.
Insurance is still denying our request to be seen for transplant at Lucille Packard instead of Pittsburgh. And despite the doctors at LP stressing to insurance how more cost effective this hospital is both for our family and insurance, they still don’t want to approve it. My next step is to gather information from our transplant coordinator in Pittsburgh, present that info to our GI doctor here and have her write a letter to our insurance on our behalf. Hopefully something works because this kidshould not be waiting years (we’re going on 2) for a transplant when I’m confident it would be done in months at Lucile Packard.
Please pray for continued health for Jaxson as we plan to go to California in a couple weeks to spend Christmas with family, and I’d really like for this trip to happen.
Please consider donating or passing this link around for his transplant related expenses.