Lauran had her 1st visit at Children's hospital on Thursday and her 1st transfusion her in the U.S. It was a long day! I was there by 8:00 am and home at 3:30. Getting her IV inserted proved again to be stressful. They had trouble getting it in the the vein on the 1st arm they tried. I have never witnessed a nurse poking around to find the vein :( Then they saw a spot on her hand that looked like she had been poked before so they tried that...and thankfully it worked because she was screeching!!
The appt consisted of blood draws first, then waiting for blood tests to return, then the transfusion. Lauran also had an exam with the nurse practitioner from the hematology clinic and at the end of all that we saw the hematologist. The main conclusion right now is that she will need monthly transfusions for now. She will have to have weekly blood draws to monitor her hemoglobin. As they monitor that, and as she has her transfusions, they will hopefully be able to see a pattern and have a better idea of how often she needs the transfusion...most likely every 3-6 weeks. She is also having her iron monitored closely. Having too much iron is a side effect of having frequent transfusions. She will need a medication to reduce her iron at some point in the near future. She has basically been classified though, as having Thalassemia major. The more severe form of Thalassemia. Basically her body doesn't make one of the chains of hemoglobin efficiently. We still do not know which chain..alpha or beta... What ever the exact chain is the result is the same..... with out transfusions she becomes anemic. She will need transfusions for the the rest of her life with close monitoring of her iron....unless we pursue the cure which is a bonemarrow tranplant. That is a whole other subject and I will go into that later. Right now we will concentrate on transfusions and try to avoid complications. Most of the complications of this disorder result from over load of iron which build up in the liver and then the heart and cause damage. To help monitor this, she needs to have an EKG and Echo Cardiogram so we can get a baseline. I am assuming then these will need to be repeated every so often to make sure she is not having any problems due to iron.
The one other complication of her disorder is an enlarged spleen. Hers is already enlarged and they said they will have to watch that closely. Some patients have to have it removed. They try and wait as long as possible though because the spleen protects against infection. It is not good for a young child to have it removed.
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With ALL that said, we know this will not be easy. It will take some adjusting. We know that God chose us to care for Lauran. We feel blessed to have her in our family and she has already blessed us beyond words! We feel confidant that He orchestrated all of it and will work out the details. Most of all, we rest in His strength not our own! We are so thankful!
P.S. I posted pictures from the last few days or our trip (ran out of time in china) below in another post...so check those out too!
1 comment:
Checking it all out! Nice updates. Hard to read all that Lauran has to go through. Sending Hugs and prayers.
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