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She is going in for another modified barium swallow on Thursday to see if she has outgrown her dysphagia. (crossing fingers, and toes!).
She also has her hematology appointment on Thursday.
I feel extremely burned out on this ITP crap.
I haven't updated much about this lately, because I am SO tired of it all.
I posted HERE about what I had learned about ITP so far. That was back in MAY. A lot has happened with her and her appointments since then.
She had her last IVIG in May and her counts went up a little and then at her appointment 3 weeks post IVIG were around 33,000.
Then a week later they were 21,000.
Then another week later they were 19,000.
We were in "watch and wait" mode.
Those counts are LOW by normal means, but not quite low enough to put her through a treatment.
Then miraculously the week after they were UP to 65,000. We all thought she was making platelets on her own again and scheduled an appointment for 4 weeks later.
Only 2 weeks after that appointment she was covered in bruises again and I asked for labs to be drawn.
We were fortunate enough to have them send a lab order over to a local lab rather than have us come downtown. We drew labs last Monday and her count was down to 19,000.
I completely lost it when I heard that number. Not because I really thought they would be higher, I knew they wouldn't. But because this means she is probably NOT in remission yet. And it hurts me to know that this is not over.
Again, that is low but not enough to put her through a treatment.
We go back this Thursday. She is still pretty bruised. So I am anxious to see what her counts are this week.
I am tired of this disease taking up so much of our time. I am tired of this disease causing my 2 year old to need almost weekly lab work. I am tired of this disease running my/our lives. I am just tired.
Will update after her appointment on Thursday.
*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*
2 comments:
Sending big hugs for you and the Princess! And prayers too.
So sorry Tracy. You are having to deal with so much and I know how tired you are. And sick of it all. If there is ANY little thing I can do to help I will. I have two preschoolers in the house now during the week, so maybe if we do a few playdates, Superhero would feel comfortable enough to come and play one day while you have a doc appointment? This will pass. Just keep breathing!
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