That's right - the treatment they started Sean on is $18,000 a day and he had 2 days worth this week, but he sure looks like he is having fun, right? thank heavens for insurance!
Sean had a doctor appointment on Tuesday and they decided to start IVIG treatment on Wednesday and Thursday. We are so excited to start something!!! It takes around 5 hours to get the treatment, so you just sit with an IV and wait. The side effects are kinda sucky and where they gave Sean such a big dose 2 days in a row he is miserable right now with a headache and flu like symptoms. Regardless, we are still happy to try something. He won't notice if its working or not for 2 weeks - so we just wait and pray the he starts to see some improvement. If this doesn't work the next step is ANOTHER muscle biopsy, this time with an ultrasound and EMG needle in the muscle to get the right spot. Sounds intense, we would much rather have this work, if it does we may never know what this illness is...but in all reality, if he gets better I don't think we care.
The sad thing about the IVIG is they say they are in a major shortage right now. Its an eye opener to have someone that may be dependent on the treatments and think of all the times I should have donated blood, etc. There were so many sick people there that day getting the treatments that I have made the resolution to give blood every time a chance arises. Again, just another way this has changed our outlook on life for the better - now we just need to get him better!
8 comments:
oh I too hope this treatment works and that they'll get more supplies soon. How are you holding up? Have you been able to embrace your pregnancy at all? We think of you and pray for you often.
Count on Sean to be smiling thru the pain. I sure love you guys and pray for you everyday. Can't waiat to see you in Roose town this week!
It all sounds so confusing not knowing what in the world is wrong. I hope things start going up from here for you guys though. Oh, I found out you had a blog so I thought I'd leave a short message. I don't know quite how to use mine yet, so I don't know how to add you to it...
Lynzi,
Thanks for thinking of me and your shower it would be sweet if I could make it but if not know I wish I could. My address is
1632 S. Main Street #206
Moscow ID 83843
Keep plugging along and tell Sean hello from us.
I hope this works for him! I think of you often! :)
Myles told us what was going on a week or so ago and we couldn't believe it! I will be checking your blog to hear how everything is going!! Let us know if you need anything. I hope everything goes well!! We'll keep you both in our prayers!
Lynz I it sounds so crazy. I am so sorry. Hope you are feeling okay with the baby and all.
Does Sean need some of my blood? I mean He did teach me how to drive a stick in his little blue truck back in the day.
I will keep checking in and see how things are going.
Love you both
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