Sunday, April 25, 2010

Would you ever think.........

..............that ice chips would make a 2 year old sooooooo happy?

Mason has been a very happy boy today, because I've been feeding him ice chips all day. Not ice cream, candy, pop, or fruit snacks but ice chips is all it takes to cheer up sweet little Miracle Mason!!! Someday soon, hopefully Mason will get his appetite back (that he lost last August) and he'll be excited for a yummy milkshake instead. Our nurse was able to bribe him with ice so that I could go outside and eat some lunch in the sunshine. It has been a beautiful day here today.

When I turned my back on Mason to grab the camera, he excitedly grabbed the cup of ice and then spilled it all over himself! Woops!

In the next day or two the docs want an ENT specialist to do a scope (take pictures) of Mason's vocal chords to make sure all is well before we offer him water or any other thin liquids. Sometimes from being on the ventilator or having heart surgery vocal chords can be temporarily damaged, which can increase the risk of aspiration. We were letting Mason drink water the week following transplant, but it would cause him to cough quite frequently. And, after 10 days of being off the ventilator post transplant surgery he still had a very weak voice. So this time after being off the ventilator the docs want to be more cautious, because the coughing with drinks of water and a weak voice are both signs of possible vocal cord problems.

Today Mason's chest x-ray showed that the left lung effusion is almost all cleared up! Fabulous news!! We are so excited!! Because it is Sunday, the chest tubes didn't get pulled by the surgical team yet. I guess it is not a 'Sunday Priority", but most likely he'll get them out tomorrow. Since both lungs look good now, he'll go to normal nasal O2 tomorrow and then our goal is a day or 2 back to room air again!

Mason has been getting slow continuous G-tube feeds through out this rejection episode, but tomorrow we will try bolus feeds again (his normal routine of a 3 oz's of his high calorie formula every 3 hours.) We had been doing this prior to knowing about the rejection, but he was having trouble keeping that and all his meds down. Hopefully he'll be able to handle it better now.

Mason has had his nights and days mixed up this last week. Last night I think he slept 3 hours total! He was tired out from his 'all night party' and took a 9am cat nap today. Here's my sleeping superstar hero:

So far, day 3 of Round II of Mason anti-rejection treatment has gone well. I'm so glad he and his heart continue to tolerate this nasty rejection!

I'm grateful for prayers, fast, and special blessings that continue to carry us forward in our journey. I'm grateful for kind gifts, cards, e-mails, text messages, lunches and dinners (from church members here in Pal Alto), meals for my family at home, help w/ laundry at home, and much much more. How could I do this with out you? It would be very very difficult!! Love and gratitude to all of you!!!


Jennifer said...

I am so glad to hear that Mason's left lung is clearing up!

How are you handleing these sleepless nights? I hope you get to nap when he does.

Take care of yourself!

Hugs from Snowflake, AZ

Paul Cardall said...

Thank you for your posts and beautiful example of faith and endurance!

Mindi D said...

Not a 'Sunday priority' ?? Poor guy. Sometimes i wish they would just teach us moms how to do things, then we could do it when we want :) I agree with Paul, you really are such a great example of faith, and courage.. and patience.. etc etc. Thank you, you really inspire me to be better. I hope you get some sleep tonight :)

The Simmons Family said...

GREAT news!!! I am thrilled to see Mason sitting up and munchkin on ice. Just another thing our boys have in common.. forget food.. bring on the ice!!

I'm praying that things continue to go in the right direction!!! Any word on biopsy this week?

The Blanchard Family said...

I have been reading your sweet blog for some time now and thought it was time I let you know what a special and wonderful person I think you are. I am thankful for your example of faith. I lost my little Ava to HLHS in September so it makes my heart swell with happiness to see these miracles take place for these amazing little kids! My family and I are cheering for Mason and a speedy recovery!! WAY TO GO. . .you and the rest of your family are an inspiration to all!

cici said...

Awww. He knows what he needs. Soothing an inflammation somewhere in there.
I am praying, wishing and hoping for a quick healing and turnaround.
I always look forward to your updates and good news!

Mimi said...

Oh YAY!!

I am so so happy for your family. I am finally catching up with blogs and he got his angel heart!!!

What wonderful news- I am going to go to sleep one happy girl.

I know there are quite a few transplant moms out there, but if you have any questions- let me know.

Go Mason Go!!!

Hope's Blog said...

What a wonderful post! Go MASON!!! He is doing so well and such a little trooper.

♥ Michele ♥ said...

He looks awesome!! I am so glad things are turning up!

Kyle and Alli said...

Small steps in the right direction. Great news. I hope the ice keeps him happy, the scope reveals no lasting damage, and the chest tubes come out today!

Bob and Joan said...

A tiny bit of pleasure with ice chips, how delightful and deserved.
Wonderful too to hear of the healing for the lung. Praying for the next important change.

Lisa Curcio said...

It is good to hear he is both feeling and doing better.

I am praying for his Heart and his strength.

Stefenie said...

What great news to hear that he is doing so well!

Logan had vocal chord paralysis following his first surgery but he was still able to eat by mouth. Saying lots of prayers that things will be fine and Mason can enjoy some yummies again!

Keep chugging along! You guys are doing a great job!