Monday, January 17, 2011

Hooray! Mason is Back Home!

After 4 days and 3 nights in the hospital Mason and I returned home
last night. Hooray! I honestly don't know how I did it for 7 straight
weeks last spring after his transplant, eating and sleeping at the
hospital without leaving. I guess we all do some pretty crazy things
for those we love :) I will say, most importantly Mason is much
much much happier to be home. (He has major hospital anxiety! )

And the best news of all is..............
his heart function on Sunday morning's echo had returned back
to his normal healthy baseline. His tricuspid valve is still leaking,
but only mild-moderate which is about where it's been at since his
big rejection last April. I'll take that over the severe leak it had
on Thursday, the day of his biopsy. Still a medical mystery as to
what caused his "sick heart" episode, but definitely a miracle
that Mason got better so quickly!!!

(Mason is eating goldfish crackers while sitting in one of hospital's
wagons.) He seems to feel safer sitting in a wagon rather than in the
hospital bed. Once we got out of the ICU on Friday afternoon and moved
up to the 3rd floor he wanted to go on walks all day long. But you can
only circle the hospital so many times without going stir crazy!!!

Poor little guy is on about on 3x the steroids he was on before this
hospital stay. He is not happy about that (nor am I), It makes him
so grumpy and irritable. The steroids are causing high blood pressure and
messing with his Cyclosporine level. We already had to go back in for a blood
draw this morning to check his Cyclo level. We had been going at least
2 weeks in between blood draws, but now we are back to 2x a week again.
Mason is on a steroid taper after receiving the IV steroids (solu-medrol) so
it will take him 2 weeks to get back to his normal dose.

I thought he was restless on his normal dose, but on 3x that he is
much much more than restless!! Here is Mason below asleep on our couch
FINALLY at 6:50 am this morning after being up most of the night.
(And check out those red chubby steroid cheeks!)

Mason and I watch a lot of Disney channel in the middle of the
night because there is never anything else decent on. So if I were to
tell you that my favorite show right now (besides Grey's Anatomy) is
Wizards of Waverly Place then at least you would know why! Mason
likes the TV on because I think he's afraid to fall asleep......but he
eventually does. Shhh don't tell him :)

Thanks again again for all your prayers and sweet positive thoughts
being sent our ways during this most recent speed bump.

Friday, January 14, 2011

Happy News

Mason's echo looked much better today. Hooray!! His left ventricle function improved over night, almost back to normal. Wow! Absolutely a miracle! His tricuspid valve leakage also improved from severe to moderate. This news is definitely happy news! The small dose of Milrinone and the super strong dose of IV steroids along with many prayers brought a mighty change in my sweet little boy's angel heart. For this I am so grateful.

They stopped the Milrinone this morning and now Mason just needs to complete the 3 full days of IV steroids. Sunday morning he'll have his last dose and then another echo. If his echo still looks good and close to his normal then we will get to go home! Yeah!! I must say, this hospital stay is turning out much better than I had thought yesterday after his biopsy and echo. We could have been here for weeks if he truly had been in rejection.

So far all the blood work has come back negative for viral or bacterial infections. Thus we are unsure still what caused the decreased hear function.

Thank you to all of you for your sweet comments, prayers, concern, love, and those helping at home. I never feel alone on this journey. Thank you!!!

Thursday, January 13, 2011

Results Are In.......

Biopsy results are in and I have much better news than I had imagined. The results are puzzling, but I won't complain....... ZERO rejection! I can't believe it! Except, this is why we call my sweet little boy 'Miracle Mason'!

That ZERO doesn't make everything all better, but it definitely helps get us back in the right direction.

Dr. E here at Primary's and Mason's two transplant Dr's at Stanford consulted quite thoroughly today. They are still concerned about his decreased heart function, and higher pressures, but are very glad he's not in rejection. It is unclear right now what may be the cause. They are running several blood tests to look for different viruses that can affect heart function.

For now the plan is to stay here at least 3 more days. He will be getting 3 days of IV steroids and 1 day of IV Milrinone. Hopefully this will help his heart function, help him feel better, and get us back home soon.

I am so very grateful for all of your prayers and for some good news at the end of a long day!!!

A Sad Speed Bump

This certainly isn't the post I wanted to be writing right now! It makes me SAD!

Mason is most likely in rejection right now. :( :( :(

This might explain the "not himself behavior" this week.

Even before getting back his biopsy, Dr. Everett his almost certain he is in rejection.

Since his last echo 1 month ago, his left ventricle function has decreased and his tricuspid valve function has decreased. (signs of rejection)

Since his last biopsy at the end of September the pressures in his right atrium are significantly higher. (sign of rejection)

Mason will be admitted today to the CVICU here at Primary Children's to receive IV steroids (for rejection) and Milrinone (for heart function).

Dr. E is consulting with Dr Berstein at Stanford about whether he will also need plasma-pheresis like he had last April at Stanford.

Please PRAY with our family that Miracle Mason can yet overcome another speed bump! PRAY he will be STRONG and fight this rejection off! PRAY we can take care of this here at Primary's and not have to return to Stanford. (Stanford is wonderful, but it is sooooo far from our family!)

Here are my famous words: HOPE, FAITH, PRAYER, LOVE, & MIRACLES
If we BELIEVE in all these we can over come this sad speed bump!!!

(Maybe this is all my fault because this is the first time I've come to the Hospital with Mason without bringing an overnight bag in the car with me!!!)

Happy New Year!

I am sorry for taking so long to update our blog. As usual, time seems to fly by me each day before I can get anything "extra" done, such as blogging! Our holidays were very nice, as I hope were all of yours.

Mason has taken awhile to get over the croup, but he is finally cough free. Although now, the last two days he hasn't really been himself again. He's been super clingy, more than normal, and sleepy. (But, of course he will only sleep in my arms!) Hopefully, it's just a fluke and he will feel good enough for his biopsy on Thursday morning. (Okay, I've been working on this post for several days, a few minutes here and a few minutes there, and now it is Thursday so Mason's biopsy is TODAY. We are presently waiting in pre-op)

Honestly I'm nervous for today's biopsy results. This will be the longest(3 1/2 month) he's gone between biopsy's. Before this the longest he had gone was 1 month. He hasn't shown any signs of rejection, but like I said above, he hasn't seemed quite himself this week. I'm praying that I'm worrying for nothing! I imagine we will have results this evening or tomorrow morning. I will post as soon as I do.

Here are a few pictures from our holiday season:

Mason went to spend a couple hours on Christmas eve at
Grandma SanDee (my mom) and Grandpa Wally's house, because
he was much safer from oodles of germs there. Our kids only
have one cousin on my side of the family..........

(The Nativity Play)
.............. but, on Mark's side of the family
they have 50+ cousins ( I lost count). This is where the
rest of us went for Christmas eve celebration, because
traditionally we spend this night with Grandma Marilyn
(Mark's mom) and Grandpa Jerry and the whole family.
Christmas day we spend time with my family. (This is what you
do when both families live near you!!! Divide and conquer!!!)

(nativity scene continued)
Ammon was a shepherd, but would not leave his costume on.

Braiden was one of the Wise Men.

Preston was Joseph and cousin Nicole was Mary.

Always a precious, special, and comical part of Christmas Eve.
It just wouldn't be Christmas Eve without the nativity and
lots of laughter!

(back home at our house)
The kids all got new pj's as for their Christmas Eve gift from
Mom and Dad. Getting them all to look at the camera at the
same time is almost impossible!!! Mason was laughing until.......

Ammon came up from behind him and then got too close to
his face. Mason does not like anyone getting too close to him
and has learned to 'hold his own'! As you can see he's practically
attacking poor Ammon! Someday these two boys WILL
be friends and act like they really love each other!

The kiddos are spying on Santa early Christmas morning
to see if they can catch him bringing their gifts.

Ammon was very excited about Santa this year and
couldn't wait for a Buzz Lightyear present.

And the Christmas morning fun began.........

A couple kiddos were tired after all the excitement.......

During the holidays our kids spent a lot of time playing with
their cousins. Mason played with them also, just a couple at
a time make sure he was safe from any sicknesses
going around. (But some how he caught croup anyways!)

Mason and Ammon are playing with cousin Brextyn.

And here they are with their cousin Rachel.

We had lots of playing and sledding in the snow !

And we also celebrated Mark's Birthday.

I hope this New Year brings your family much happiness and joy. I pray that Mason's New Year brings him more health and strength. We feel so blessed with how well Mason is doing with his new heart. May this coming year continue to bless him with many more miracles and hope!

Happy New Year from Mason to you!!!