Wednesday, July 13, 2011

Heart Buddies and Prayers

Have I ever commented how amazingly special the "heart world" is? Before Mason was diagnosed at 3 days old I was completely oblivious that this world even existed. But, let me tell all of you how wonderfully supportive it is to be a part of this heart world. As "Heart Moms" we understand each other, we cry together, we laugh together, we learn from each other's experiences, we pray for each other, and we truly love each other. We love their heart kids like they are our own. Never does a day go by that in my personal prayers and our family prayers we don't pray for "Mason's Heart Buddies"!

During Mason's recent hospital stay we met some new heart buddies. Two of which are 12 years old, my Kaitlin's age. These 2 were very healthy one day, and the next day very sick and in need of a new heart. This is hard for me to fathom, even being part of this heart world. I just picture this happening to my own daughter! It's one thing to know from 3 days old (or for some since your pregnancy) that your baby will have a tough road ahead , but completely another thing to have a completely healthy pre-teen collapse and need CPR before your eyes!!! Okay both scenarios are hard and just make me want to shout........ "appreciate each day of life with your kids and loved ones like it could be your last!" You just never know what tomorrow brings!!!

Please pray for our heart buddies............

This is Abby.
She is a 12 year old soccer player from St George Utah.
She received a new heart YESTERDAY!

This is MiaBella.
She is a 12 year old soccer player from Salt Lake.
She received a new heart on June 5th.

This is Shakeara.
She is a 22 year old young wife from Preston Idaho.
She was born with a CHD and has had several surgeries.
She now is experiencing heart failure and liver problems.

Now this is our heart buddy Kaidence from the very beginning
of our heart journey. She has had vocal cord issues since her
heart transplant in December of 2007. She spent the night at
Primary's while we were there this last time after she had
another procedure done on her vocal cords. We were right
across the hall from each other. Her mommy and I had fun
catching up while Mason and Kaidence played together out on
the third floor patio. It was so wonderful to see them play together,
for 3 1/2 years ago they were two of the sickest babies in the PICU!

And how's Mason doing?

Mason has enjoyed being back home!
We spent the 4th of July at baseball games,
his most favorite way to spend time lately.

He was happy to see his little baseball game buddy
Kiersten.He had missed hanging out with her
while he was so sick and in the hospital!

Big brother Preston bought him a blue sucker at
another baseball game last week. Not the best color lips
for a heart kiddo! Especially his first day off of O2's
from his recent pneumonia! (Note to self: only
red suckers for Mason please!)

Mason did pretty well coming home from the hospital, except for completely mixing up his days and nights! By day 5 he was able to come off daytime O2's!! Woo hoo!!! But........ by night number 6 he began to have relapse. He coughed so hard all night that it caused him to throw up. He also had a low fever. He had hardly coughed since his discharge, so I was worried the pneumonia was coming back. Dr W, our pediatrician, checked him out for me that next day and sure enough...... his left lung sounded very junky. His left lung wasn't completely clear when we left the hospital, but definitely not this bad. Poor little guy and his left lung that just doesn't want to behave itself!!!

Mason is now on another round of oral antibiotics (Omnicef) which hopefully will do the trick and back on O2's day and night. I'm praying we don't have go back to the hospital for IV antibiotics. Mason has lost all of his steroid chubs now (I think from the strong IV diuretics he received while in the hospital and from coming down again on his steroid dose), but on top of that he has lost weight from his constant antibiotic induced diarreahs. I'm trying everything I can (by mouth and G-tube) to help put some weight on this skinny little kiddo but everything seems to go right through him right now. So please add to your prayers that Mason can gain some weight and get stronger. He needs to put some meat on his bones so he can walk!!!!

Thank you to all of Mason's fans and supporters. Thank you to all my "Heart Mommy" friends for your friendship and love. Thank you to all those who continue to pray for my Miracle Mason.

Sunday, July 3, 2011

Home Once Again

Good News........Mason was discharged yesterday evening! He is still on just a little bit of O2's day and night, only 1/8 -1/4 of a liter. Although I would love to have him back saturating great at room air, this is definitely much better than the day he was admitted 2 weeks ago when he was needing 2 liters! Probably another week of supplemental oxygen and he'll be good as new again. Or at least this is our Hope!

It is so good to be back home with our family and sleeping in our beds. Even ending up sleeping on the couch with Mason in the middle of the night is better any day than a hospital bed!!! After two weeks of hospital life I'm now asking myself how I did it so much longer at Stanford last year with out going completely crazy?! I guess for the love of our children sometimes we have to the undreamed of!

We are so grateful for the many prayers said for Mason during this awful sickness. I know without a doubt that each and every prayer and positive thought of faith and hope have been heard by Him, our Father Above, and have contributed to Mason's healing. We are grateful also for all the extra helping hands with house work, yard work, playing with my children, running our boys to baseball etc.... while I was with Mason at the hospital.

pray one for another, that ye may be healed,”
James 5:16