Friday.
Brian and Nathan went to Rochester on Tuesday and got home yesterday. It was a really, really good visit overall.
It was Nathan’s first blood draw without a picc line and we really didn’t know what to expect. Nathan unfortunately had a really difficult time. It took over an hour for Brian and the nurse to help him through his fear and anxiety that even the Ativan couldn’t touch. Finally they compromised and got blood from a tiny vein in his hand instead of in his arm.
The following day the IV poke for the infusion went SO MUCH BETTER. Yes, Nathan had an extra Ativan but he said he felt better knowing what to expect not only from the nurses but also from himself. It literally took him 10 seconds to work through it, the nurse was fabulous, and then he got to rest for a few hours while the eculizumab infusion took place. Thank God for good nurses.
Dr. O’Leary was really pleased with Nathan’s test results (he said the echo looked “amazing”) and things are all moving in the right direction. Hallelujah! Like I’ve said before, back in January, February, and March, it seemed like we would never reach this place. But here we are, by the grace of God.
The best part of this whole visit is that they’re spacing out Nathan’s appointments to ONCE A MONTH! Instead of every two weeks, we’ll be going again at the beginning of September! We’re so excited for more normalcy of LIFE. Not only that, Nathan’s Cellcept dose dropped again, so he’s taking one less pill a day. We like the slow and steady decline of drugs!
Nathan also sagely pointed out that he never really had a “welcome home” party after being gone for 6 months so stay tuned for that little shin-dig
Thank you to our family, friends, and community for your support and love. We truly are grateful for everything you’ve done for us and specifically for Nathan. He is living life and happy and, dare I say, the healthiest he’s ever been.
Love,
Mary, Brian, Ellie and Nathan
P.S. I just read the transcript for the Kids with Courage story that will air at the end of the month and it sounds so amazing!
If you are interested and feel called to help, you can donate to COTA in honor of Nathan, to assist with transplant-related expenses. Please visit: https://cota.org/campaigns/COTAforBraveheartNathan
Any donations given through CaringBridge will go only to CaringBridge. ????