Today makes seven weeks in Charlotte and seven weeks that our family has not been able to be together except for visits with Brayden and Hannah Grace. In some ways it feels longer and in other ways it seems like just a few days. The Lord has certainly given us strength to be apart. We know He is carrying us through this journey every step of the way. Brayden is dealing with allergies so we are so thankful that he is not contagious! We hope to be reunited either late tonight after church or sometime tomorrow! We can't wait!!
In case anyone is wondering about the numbers I use in the post title...the first number represents how many days since the transplant journey began and the number in parenthesis is how many days since the transplant. Landen's visit in clinic went well this morning. His platelets came up some so he did not need a transfusion today. There was not an update on the BK virus but the adenovirus levels are increasing when they need to be decreasing. :-( Thankfully, Landen is still not showing any symptoms of the virus but he can. Dr. Huo explained today that the steroid Landen is on could be preventing the virus from getting better. They've already decreased the steroid dose once but they lowered it even more today which was the original plan anyway. Please pray this will help and that the virus will go away. Please also pray that Landen does not start having symptoms and get sick from it. Dr. Huo said this is why it is so important for us to be in clinic so much so that they can evaluate him frequently and adjust his medicines as needed. He said it requires fine tuning often. Landen has been having heartburn lately and his blood pressure has been high (which has been an ongoing issue). His medication for these issues has been in pill form but today we got them changed to liquid because we don't feel like he is getting the full dose due to having to crush and mix with something. The dose of his blood pressure medicine was changed today too so hopefully this will help. He gets three medications in clinic by infusion or treatment. One is three times a week, one is every 3-4 weeks, and the other is as needed. He has five daily medicines, four of those are twice a day, and the other is once a day. He has one medicine that he gets once a week and three medicines that he gets as needed for a total of 12 medications! Whew! It's a lot and a lot to keep track of but each day it gets easier! Oh yeah that is not counting his fluids! He is on fluids that has added magnesium every day that runs for 12 hours a day. We're not sure how long he will need the extra fluids and magnesium. Dr. Roehrs reminded me today that this is a marathon. I needed that reminder as things can get difficult and discouraging. However, I'm so thankful Landen is doing well! He is feeling good and eating good! Please pray that will continue!
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