Hemoglobin 9.1 - going down slowly
Platelet 321K
Weight 12.8 kilos - very good!
We're at the Day Hospital today for IVIG (immune booster) and Zenopax (immuno suppressor) infusions. I know...boosters? suppressors? Each one does its own work. He had an allergic reaction to the IVIG today so they gave him Benadryl. He's had IVIG many times before and is just now mounting a reaction.
He did not need a blood transfusion. His hemoglobin is low but he's not showing strong symptoms. Dr. Dvorak spoke with Dr. Glader (hemotologist) about David's blood type conversion and why his hemoglobin is consistantly low. It may be the IVIG that is causing the hemoglobin problems. Today, before the IVIG they took blood to check his immunoglobulins and the following:
- CBCD (complete blood test)
- Chem 23 (sodium, potassium, magnesium, etc.)
- Prograf level (immuno suppressant level)
- Direct Antiglobulin (broad spectrum, C3, IgG) - this is the Coombs test again
- Quantitative IgG, IgA, IgM - this is the first time they have tested his immunoglobulins since transplant. This test will give us information about how well his immune system is recovering! This is an exciting test! Although, it may be skewed because of all the immunosuppressor medications he is on. If it looks like his immune system is recovering they will discuss discontinuing the IVIG.
- Amikacin peak (this is the level for the mycobacteria antibiotic)
- Retic Count
- CMV PCR
- EBV PCR
His prednisolone (steroid) was reduced today! yeah! He has a small rash around his mouth but it's not significant enough to prevent a steroid taper. He'll be on the same amount (1 ml or 3.5mg) but will take it every other day. I'll have to make a weekly checklist to help me remember when I gave it last.
4 comments:
Aimee,
We went every other day on the steroids and found it easier to remember if you just do even days or odd days of the month. Glad you are going down on the steroids.
Amy
Thanks, Amy. Nice idea!
Aimee -
I just found your blog and wanted to say that the information about Wiskott-Aldrich and your son's story that you are sharing is wonderful. My son also was born with Wiskott-Aldrich Syndrome on January 29, 2000. I remember searching the internet and not finding much information.....most of what I found offered no hope. The WAS diagnosis for our son was confirmed on April 19, 2000. The first sign of a problem was blood in his diapers when he was 3 weeks old. On June 22, 2000 he had a bone marrow transplant. Our daughter was a perfect match for him. We will celebrate 7 years since the successful transplant this week. We still go to our Children's Hospital for an annual visit to make sure everything is still working correctly.
Like you, my faith in God and lots of support from family and friends is what got me through it. Your journey with this has been so long and you are still keeping the faith. You may never know how many people your testimony will touch and how many lives may be changed because of your faithfulness. I will be praying for David's full healing.
We can ask why this happened but ultimately we have to believe that everything is part of God's plan and only HE knows how David's journey will be used to glorify Him.
Keep the faith,
Sharon Patterson
Montgomery, Alabama
Thanks so much for writing! It's so refreshing to hear from another family whose transplant was successful. I'm so glad your son had his transplant when he was young. I think that is a smart thing for parents to consider because the immune system is so immature and can adapt easier to the donor's marrow. You are so blessed to have a match from your daughter.
I don't question why this happened. I know since the beginning of sin, man would be cursed. There will be sickness and death. It is the result of sin. Not David's specific sin, but the sin of mankind. I believe there is a purpose for everything under heaven. God is glorified through the good times and bad. He is the one who gave David his life and has the power to take it away.
Thank you again for finding my blog. Please write me personally if you would like to correspond further.
aimeemcnally@gmail.com
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