We had Zack's 6 week check-up today. Good news and not so good news. This post is going to be kinda random, I got a ton of info and I'll try and think of everything.
We have been trying to get his Prograff levels up between 4.5-5.5, it's been a challenge and I think we are there. His level was 4.2 today and it was 1.5 last time. This was the first time since we started this medicine that we have not had to increase it. We are not sure if it's going to do it's job since he still has his rash. His cuticles still have capillaries (spelling) which shows disease activity.
I really do not like hearing he is going to have a chronic case of this, he will possibly have this for a very long time. Zackary has gone through all the "protocol" treatments that they have and he is just stuck. He is absolutely not getting worse but he is not getting better. You may think if he is doing good why not just leave it? Well, my answer to that is he is on some pretty high medicines he is on Steroids and a immune suppressor among 6 others. He cant be on those forever or however long it will take for him to have another "flare-up". What will these medicines do to him in the long run? I do not want him to be on meds the rest of his life if we can do something now and try to make him better. So we are going to do everything we can to make him better and not have to worry about where he is going and if he's going to get sick. I would regret if something happens in the future because he has been on these meds for so long when we could do something now.
We are looking to Dr. Pachman for some answers when we see her in Chicago. Dr. Chira explained a little how the appointment is going to go. He will be seeing a whole slue of Dr's while there. They will be taking the max amount of blood possible out of him for some serious testing. It will be an all day appointment. He will see Ot and PT and have someone else come to look under the scope of his fingers. We are really looking forward to this appointment. We will be leaving on the 16th for Chicago.
Last thing, his Platelets are still high, 3 visits now, and it could possibly be inflammation from the disease. I say why not find out why they are high. Another question I have for Dr. P.
I think that's it for now, if I think of anything else I will add it on.
Thanks for reading and keep him in your thoughts. He is such an amazing child!
2 comments:
He sure is amazing!
The Lambert's
We will be praying for Zack and your family also! I know how frustrating it is and how you just want to fix it now. I also understand wanting to just leave well enough alone with all the meds, but that isn't a choice.
I know that you will enjoy your visit with Dr. P. She is wonderful. My words of wisdom are to keep a notebook with you to write down all your questions as you think of them. Then, remember to take it with you when you see Dr. P. (I forgot mine and my husband had to go find our car and get it!) Also, remember that you want his case to be completely studied out and his plan set when she calls you back, so give her the 2 to 3 weeks that she needs to get this done. She will call back, I promise! Finally, those are a long 2 to 3 weeks and you will think of more questions so write them down and she will answer more while you are on the phone with her.
I am so glad that you found our site and it is great to meet other families who are going through the same thing. Please visit our site and we will keep up with Zack.
Again we are praying for your family!
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