Sunday, January 5, 2014

Days +122 to +135: Dealing with the Costs and the Benefits

For the past two weeks, we have been dealing with some of the downsides of Ezra's post-transplant treatment. First, last week his hemoglobin dropped significantly in just three days. It ends up that he now has iron deficiency anemia. The doctors think that the tremendous amount of blood tests that are done twice a week combined with the two months post-transplant when he wasn't eating much have left his iron stores depleted. The plan is to cut back on the bloodwork a bit for now and to try to up his dietary intake of iron. If this plan doesn't work, he will receive iron by IV to boost his stores.

Then on Friday, his liver enzyme levels skyrocketed. They have been elevated since he has been on the steroids, but never this high. If the levels do not come down by Tuesday, then he will have a liver ultrasound at the end of the week. Hyper IgM patients are highly susceptible to liver disease. This combined with two transplants puts Ezra at high risk for liver problems, so this latest issue makes us shudder. It could be any number of things or it could be nothing. We are praying the results are just an anomaly and all will be back to "normal" this week. 

Ezra's white blood cell count and his lymphocyte counts (which include T cells) also dropped this week. They are at the lowest level they have been since he was discharged. The doctors are not too concerned yet. They think that it may, once again, have to do with the steroids, even though he is now at a low steroid dose, and his counts should be increasing instead of decreasing. All we can do for now is wait and hope things turn around soon. It is so hard watching his counts going in the wrong direction. 

On top of all this, Ezra has developed a mild cough. We're hoping it's just the dryness from the heat in this freezing weather, but everyone is watching this cough very closely. Much too much going on right now. Although, if you ask Ezra how he's feeling, he says "never been better." Hoping he knows something we don't.

The one positive that we are holding onto tightly is that he still has not required his IVIG treatment. His IgG level continues to fall, but slowly. He has now passed the 9 week mark since his last IVIG. This is our one sign that something in that little immune system is working. Right now, we will take any sign of a functioning immune system.

We want so badly to feel like Ezra is safe. Just as we thought things were starting to stabilize, these latest issues are a reminder that this journey is very long, and that there are more bumps on the road to good health for Ezra to overcome.