Ian is doing well over all. He has had his first round of the sniffles and fared ok. I have a bottle of germ-x in every room at this point I think and he is now to the point where he just uses it without much prompting. We are installing a wall mounted germ-x dispenser unit in our garage by the main door this weekend. I keep sani-wipes in the car and germ-x in the car and on my key ring too. We've eaten out twice (in a resturant) and both times it was quite the production to wipe down Ian's table area, chair, etc. I'm sure the waitresses think I'm a nut case--and they would be right to some degree.
I had to flush Ian's PICC line twice today. He did a lot of running and jumping outside today and then tonight with the Wii--so it needed it. He likes to scrub his line at the end with the alcohol pad. I am anxious to get it out so he can get a good soaking in the tub (It can't get wet and right now I'm using saran wrap and holding it to avoid getting wet).
Ian continues to have some pretty intense dreams at night. We are wondering if it is a side effect of his meds and plan to talk to the doctors about it at next clinic. We don't have to go tomorrow and may be cleared for another week if Ian's labs continue to show good stability. He took meds tonight in less than a minute I think as the Wii was "calling" to him. The Wii is proving to be a great investment for him in terms of meds motivator, etc. He has to have his PICC line dressing changed on Thursday and because it will be at MUSC Brett will be there to comfort him through it.
In honor of the 8 week milestone, I'll end with a numbers recap of the transplant...
*1 special boy
*2 loving parents
*3 year transplant wait
*4 people in our immediate family
*5 hour drive to CHOA completed in 4 hours
*6 meds to take each night
*7 days on the transplant unit floor
*8 hours in transplant surgery
*9 key people in the transplant team (Heffron, Romero, Pillan, dePaulo, Vos, Rochelle, Ginger, Denia, and Pat)
*10 new Thomas engines accquired b/c of transplant (daisy, toad, troublesome truck, fireworks car, chicken car, egg car, octopus car, lobster car, disel 10, and bertie)
*11 times into CHOA for lab draws since discharge
*12 days in PICU
*19 days total in hospital
*23 days in Ronald McDonald House
*37 parking passes used
*40 staples for incision
*63 trips from CHOA to Mason Guest House
*238 pictures taken during transplant experience
*3,637 miles driven during transplant experience
*1,000,000+ reasons to be grateful
3 comments:
what a great list! and you are such a good journal keeper it will be fantastic for him to look back on and read when he is older. kudos!
I agree with Jaime! Wow! You continue to amaze me!
He looks great, E. Love to all.
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