Our "Home Away From Home" is definitely better than being in the hospital!
BUT I will say it is not easier in some ways.........
In the hospital I get to be only "Mommy", but out of the hospital I am "Nurse" also:
**Getting all his (18) meds ready 2x a day(am & pm) and 3 of those also have a 3rd dose at mid day. Thank goodness for his G-tube right now which I can use for giving all his meds.
Except, Cyclosporine (instead of Prograff, which I know they use back home at Primary Children's) is the one med the doc's prefer by mouth, because some of it can bind to his g-tube extension, they find it hard to find the accurate dose. This level has to be monitored very closely through blood draws. Mason was doing okay with it by mouth for the last few weeks (We started doing it by mouth when he started taking a little food by mouth), but last week he started freaking out every time I would go to give it to him! Poor guy, it tastes AWFUL, even when being disguised by dipping the syringe in yummy syrup, so I don't blame him for freaking out! Then Friday night and Saturday morning at home he got so mad he threw up his other meds too.
**Taking Mason's blood pressure at least 2x a day. This is important because a few of Mason's anti-rejection meds can cause high blood pressure, so he takes bp meds but we still need to monitor it closely. And, our blood pressure machine is super sensitive and only will get the bp if he's very still and quiet. This means after 20 errors on last night's try I have resorted to doing it only when he's asleep! But Saturday morning I couldn't get the machine to read at all and since he had thrown up after all his meds including his 2 bp meds we had to return to the hospital to check his bp. Thankfully, his bp was fine so it was just a short visit.
But after all that, I made an "executive" decision to stop giving the cyclosporine by mouth, (only by G-tube from now on). It is not worth it! I don't want him to freak out each time, holding his breath and puking, nor to cause new taste aversions because of this nasty medicine! I want him to enjoy putting yummy things in his mouth.
**Counting Mason's Calories.......He needs to get at least 4 meals a day, every 4 hours, and then a 7 hour continuous G-tube feed at night. For his daytime meals I offer food first (right now he's still in his potato chip and Cheetos rut as being his favorites) and then I subtract how many calories I think he ate from the 150 cal's he needs per meal and give the rest of the calories by formula through his G-tube. This is similar to our feeding schedule before transplant, but I gave up on offering food first several months ago, and now the feeds also have to be timed right with all his new meds. Some are better with food and some without. This alone could be a full time 'dietitian's' job!!
It all seems quite crazy right now, but soon will become our new normal......just in time to return to Utah and add my other 4 kiddos back into my day!!! But all of this is DEFINITELY BETTER than being stuck in the hospital!!!
Mason and I had a nice visit with big sis Kaitlin, and my mom- Grandma SanDee over the weekend. The tough part was saying goodbye once again. As Kaitlin and I hugged, both of us crying, I thanked her for being so understanding and reminded her that we are on the HOME STRETCH now! We will all be back home together soon. (Too bad end of July isn't sooner than it really is though.)
A few of our faithful blog fans have asked for our mailing address:
1401 Edgewood Dr
Palo Alto, CA 94301
One of you asked his t-shirt size: probably a 3T to be safe. (All the steroids are chubbin him up)
And one last request for skymiles.....we've been able to fly 2 of my kiddos out here on donated skymiles, but I have 2 more who are also anxious to visit! If you have any skymiles to donate please just leave a comment with your e-mail so I can get in touch with you.
Most importantly.........A NIGHT OF CELEBRATION HONORING MIRACLE MASON will be on JUNE 23, 6-8:30PM, ALPINE UTAH. This will be a fundraiser night with a silent auction to help pay for our overwhelming amount of "out of pocket" bills for Mason's new heart. More details will be announced soon. A huge thank you to Paul Cardall who'll be performing that night, as well as a few other very special singers. MARK YOUR CALENDARS!
A few pictures from the last week:
Mason needs to wear a mask whenever we are in public.
Unless we are outside and people are at least 3 feet away.
He is VERY immune suppressed!
Taking a walk out on one of the Hospital's beautiful patios.
A happy reunion between mom and daughter!
Saying goodbye to 3 of our great nurses up on 3 West.
(Kim, Tracy, & Kristine)
Grandma, Kaitlin, Mom, & Mason on the Big Discharge Day.
Wow! I think we had literally moved in to the hospital.
Our stuff filled up the whole back of the Brand's Yukon.
Kaitlin made this out of rose petals in the back yard
as Mason's welcome home sign.
Having a little picnic in the back yard! Oh so happy!!
We went for a walk at the outdoors Stanford Shopping
Center. The flowers there are absolutely beautiful.
Mason was very happy to see some new scenery!
Saturday, we walked around a little bit of the Stanford
campus. In this picture we found a water fountain
just perfect for throwing "wishing coins" into.
It's getting late! I'm headed to bed and will update again in a few days.