Monday, May 17, 2010

Definitely Better

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:
Miracle Mason
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.


madelyn said...

Mason looks fabulous! I know how overwhelming the 'new' normal can be but pretty soon it will truly start to feel normal. We've done so many medication changes lately that it's hard to remember what to give when - so it takes twice as long to double and triple check everything. I'm longing to get back to where giving meds is just as easy as fixing breakfast :) Enjoy this beautiful day. Praying for you and your family to all be home together soon.

Suesan said...

Ive been following for about a month or two....just wanted to say Congrats! So great to see you all outside! Im all choked up!

Kyle and Alli said...

I feel overwhelmed just thinking about the rigorous meds and feeds schedule!! I sure hope that Mason gets the desire for more food sometime soon so that some of that burden can be lifted!! Enjoy your home away from home!

The Simmons Family said...

I am amazed!! Mason looks so wonderful and when I see you, Mason and Kaitlin, I can't help but think of what it's going to be like. Argh. Bring on the tears.

We won't stop praying. I can't wait until July and wish I could speed up time. You are on the home stretch and you did it!! You took a leap of faith and look at how blessed you are!!

I am so happy for your entire family and especially Mason. I'm sure he feels great with that new beating heart.

Weeks like this one make me wonder if we're doing the right thing by waiting.. but more on that later. :)

Have a great week!

Charlie said...

Thanks for sharing your story about your son. He is truly a miracle. It's been nearly 3 years now since my 13 year old boy Adam left us from a sudden brain hemorrage. I miss him every day and yet I know I will see him again. I would have given my life to keep him here, but he was called back to serve a mission on the other side of the veil. Your son still has a mission here to accomplish and part of his mission has been giving us all hope in miracles and the true resurrection of all of us when we will be reunited with our loved ones. We have felt Adam near us many times and know we have an angel watching over us as we finish this journey we call life.

Charles Ball

momof16 said...

Congratulations!! It is so great to see Miracle Mason out and about. He looks so happy and content. I started following your blog a few months ago after I saw an update on Paul's page. My kids have since added Mason to their list of kids to pray for, but they have taken a special interest in Mason. My seven year old son and five year old daughter ask about Mason on a daily basis and are so excited to see the new pictures you post. May God continue to bless your lives and we will send lots of happy thoughts your way as you count the days till you get to go back home to your other four kiddo's:-)

Ang said...

Sydney is on cyclo as well and has a G tube too. In order to get the tube ready take 3-4 ml's of cyclo and let it sit in the tube for 4-5 hours -- it will "prime" the tube and very little will not make it in. You then have to flush a ton with water after but it works!

Heart Hugs,


kurtis said...

I'm so happy you're out of the hospital! Enjoy that little guy, he has touched our hearts forever :) Can't wait to meet you guys one day soon!!

Bob and Joan said...

So happy to see all of your happiness. Great to have some of your family close for these happy moment. Praying for you too as you take on the extra load of being nurse and mother. Love to you all.

Jennifer said...

WOW! And I thought having a newborn was time consuming! What impresses me most is your confidence in making choices about what is best for Mason (with the meds going in the G-tube instead of mouth). It's something I love about being a mom. We stress and don't know what to do....and then we just KNOW...and we feel good again. You're such a good mom!

Hope the Biopsy comes back good! :)