Miracle Mason: A New Day

Thursday, August 19, 2010

A New Day

Today is a new day.

We pray this day is a much better day for sweet Mason.

Last night he did have the breathing tube taken out and has been doing fine on room air since.

Our nice nurse allowed me to stay in the CVICU over night and share Mason's bed with him. (He would have freaked out if she hadn't though!!!)

The docs are still unsure of the cause for yesterday's episode.

On rounds this morning the transplant team decided to send Mason to the cath lab for a biopsy (his routine one was scheduled for next Friday) because, with his pneumatosis coming on so suddenly, yesterday's seizure like event, and his hypertensive blood pressures he's been having this week, they're concerned that these are possible signs of rejection! Please NO!!

He is in the cath lab right now for BIOPSY 8.

PLEASE SAY MORE PRAYERS FOR MASON THIS DAY FOR NO REJECTION!!

We should have results late tonight.

Thank you to so many for your concern and prayers.

13 comments:

Julie said...: We're praying for you!; August 19, 2010 at 1:22 PM
Ang said...: Prayers for you from out family. I am at the hospital and will see if I can find you and introduce myself.; August 19, 2010 at 1:26 PM
The Simmons Family said...: We're praying... zero rejection!!; August 19, 2010 at 1:39 PM
Unknown said...: Oh little Mason, stay strong buddy and let your heart stay strong also. Praying for no rejection and good news tonight!; August 19, 2010 at 1:57 PM
Wodzisz Family said...: We have been praying for Mason all day. We will continue with the no rejection prayers now.; August 19, 2010 at 2:53 PM
PRAY4CALLIE said...: Just said a pray for sweet Mason!; August 19, 2010 at 6:43 PM
cici said...: Hugging your sweet boy in Prayer.

xxoo; August 19, 2010 at 7:47 PM
Beth said...: Praying for Mason...; August 19, 2010 at 7:51 PM
Summersheartjourney said...: Sending you hugs during this difficult time. So very scary! Will continue to lift you, Mason and your family up in Prayer.
God Bless You!
Summer; August 19, 2010 at 8:01 PM
Rachel Lund said...: Our little one, Mason's age, does not go to bed at night without saying in his prayer, "Bless Mason...his heart get better!" We'll keep them going!; August 19, 2010 at 10:12 PM
Jennifer said...: :{ Bummed by this....but praying for a great Bio!

Keep of fighting Mason! You're gonna win!; August 20, 2010 at 9:02 AM
Mindi D said...: Hoping for good news!!; August 20, 2010 at 4:01 PM
Deborah A. said...: Praying for Mason. And you.; August 20, 2010 at 5:54 PM

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Mason Andrew Strickland was born on November 30, 2007! He came 3 weeks early at the American Fork Hospital, weighing in at 5 lbs 8 oz . He is the baby brother to 3 brothers and 1 sister. At 3 days old he became very sick at home. After a trip by LifeFlight to Primary Children's Hospital that afternoon he was diagnosed with a variation of Hypoplastic Left Heart Syndrome. Mason will need at least 3 open heart surgeries before he is 3 years old. He had his first surgery when he was 10 days old and spent 7 weeks in the hospital. He had his 2nd surgery at 6 months old and only spent 1 1/2 weeks in the hospital. Mason also has issues with arythmias which has caused him some scary moments, a 2nd trip by Life Flight, and more time back at Primary's PICU. We feel blessed for everyday we have him here with us. We have created this blog to follow our journey through life with our little broken hearted baby, Miracle Mason (with a few tid bits about the rest of the family too).

It's now October 3, 2009 and Mason's story needs be updated. In April 2009 Mason was diagnosed with lowered heart function (or heart failure). From April through now he has been on medications and oxygen to help improve his heart function. In August, with no improvement seen in his echos we began the process to list him for a heart transplant. He is unable to get the 3rd surgery (or Fontan) as planned because of his heart failure. On Sept, 3, 2009 he had his pre-transplant Heart Cath (the last thing needed to list him for a new heart). The results that day have left us heart broken. He was diagnosed with severe pulmonary vein stenosis and is unable to receive a heart transplant. He will now need a heart-lung transplant, if he is a viable candidate. Since Primary's does not have a heart-lung program we are seeking opinions from other hospitals (outside of Utah) at this time. Even though we are extremely saddened with his most recent diagnosis, we continue to find joy in our journey with our special child of God, our sweet Mason.

(In November 2009 we learned of another possible option for Mason. CHOP and Stanford have both talked to us about doing just a heart transplant to his own one healthy lung. At this time we are exploring that option and the possibility of it being another true miracle for "Miracle Mason".)

February 16, 2010 Mason and I (Mom) flew to Palo Alto, California to do a few last tests and get Mason listed for a new heart(heart only!! not heart-lung!!) at Lucille Packard Children's Hospital at Stanford. We are excited and nervous to start this new chapter of our journey.

March 3, 2010 Mason was officially listed on the Heart Transplant waiting list as a 1B status. Mason and I will wait here in Palo Alto until he receives the miraculous gift of a new heart. We miss our family at home very much!

April 4, 2010 (Easter morning) Mason received his new heart. It was the best Easter gift our family could ever be given. We are eternally grateful to his donor family who during their time of loss selflessly gave our Mason a second chance at life.

July 16, 2010 Mason and Mom flew home to Utah to reunite with their family. Mason is still very immunosuppressed in order to avoid rejection of his new heart, but definitely happy to be home playing w/ his brothers and sister!!

January 30, 2012 Mason continues to do well with his new heart. He finally came off of steroids after 18 months in October 2011! Mason is walking with the help of a walker in hopes to walk alone soon. He conitues to have a few episodes of a pneumonia each year, probably due to only having one working lung. He also has a few new issues we are facing .....sleep apnea and severe scoliosis. But, over all he continues to face life with a fight and a big smile!

April 11, 2012 Mason had back surgery because his scoliosis had worsened to a curve of 75% (normal is 0-15%). He had two rods placed in his back, better known as the VEPTR (Vertical Expandable Prosthetic Titanium Rib). It was a rough recovery, but after about 8 weeks he was feeling much better. Every 6 months he will go in for a minor surgery to extend the rods to keep up with his growth.

May 25, 2012 We finally got into a sleep doctor and she diagnosed Mason with sleep hypoxia, rather than actual apnea. Because of narrow airways his sats dip frequently through out the night, but he doesn't completely stop breathing (good news!). So he was perscribed to be on one liter of oxygen at night while asleep.

July 20, 2012 Mason finally walks all on his own!!

Not a day goes by that we don't think about Mason's donor family who has given our little miracle boy the gift of LIFE! Thank you where ever you are!