Tuesday, April 20, 2010

Baby Steps


I think I jinxed myself with my post titled Giant Steps on April 11, one week post transplant! We are definitely in a baby steps mode now.



Mason was so fluid overloaded I knew it wouldn't come off over night, but I had hoped for it to come off quicker than it is. At least everyday his edema is a little better. His kidneys are doing their job now,( well with the help of several diuretics), but he is also taking in so many fluids because of all his meds and anti-rejection treatments it is a bit of a vicious cycle! Still praying for pee and chest tube drainage.



Heart function is still excellent. Lung function is good, with still small amounts of fluid around the left.



Breathing tube still in to allow him more resting time......time to get rid of his 'marshmallow' figure and back to his cute little Mason figure!! The goal is to extubate tomorrow (remove it), yay!! He will be a much happier little guy.



By Thursday morning we will have the antibody blood test results back, or DSA, to see how effective these treatments have been to kill the bad antibodies. Although, we won't have a true measure of his rejection status until after his next biopsy. This will probably be on Friday or Monday and then we can get results late that night. After that we will then know our next plan of action.


Here are a few pictures of our last couple of days:



Anytime someone new walks in the room, or he thinks I've left the room, Mason raises his arm. This is while being pretty sleep on sedation. The nurses and I have joked that he's saying "excuse me, can I go now?" I'm all done with this stuff!" or "Mom, wait! I'm coming too!"




Some of Mason's meds and treatments tend to make him quite itchy. He's constantly trying to scratch his face.



So, I have been placing a ice cold wet towel over his eyes and cheeks and it seems to help.




This is the plasmapheresis machine used for one of Mason's treatments. The yellow liquid is the new plasma he is receiving that is free off the bad antibodies.



Got to go now. I need to get Mason a new cool wet towel for his itchies. I will always update with any new updates or changes. For now, we'll keep on with our baby steps......and in the right direction!!



Thank you for all your love and faithful prayers for our sweet baby.
Love, Summer

21 comments:

007 and the A team said...

<<<>>> for both Mason and Mommy. We love you guys. Know that even if we don't say it, our hearts and prayers are with you.

Bob and Joan said...

So very happy to see the words "baby steps" at the top of the post. We will keep positive and steady as our prayers continue through out this next day.

Tasha said...

We're still praying. Thank you for taking the time to update. ((HUG))

The Simmons Family said...

Baby steps are still steps in the right direction. Thank you for updating! The pictures make me so sad for him.. the itching, the dreadful breathing tube and the bright lights of the ICU. I pray that his antibodies are MUCH lower, his rejection is under control and that he WILL indeed be exubated tomorrow!! That will be wonderful!

cici said...

Love the pictures. What a little sweetheart he is. Praying now for extubation and no more itchies!

Tawny, Bo and Orion Aye said...

found your blog through Moments With Moriah. we are praying for little mason!

madelyn said...

Steadfastly praying for you and Mason. Also remembering to ask God to cover your other little ones with comfort and peace while they await your return to them.

Kyle and Alli said...

Oh the baby steps. I am glad that despite some big setbacks Mason is moving forward however slowly it might feel. I sure hope that his itching and other side effects can subside so that he will be able to breath easily tomorrow if he is indeed strong enough to be extubated. Go Mason buddy!

Anonymous said...

Summer, Mason, and Family...
My thoughts and prayers continue to be with you on this journey. I read your entries on Mason daily. You are an amazing mother... it has to be so hard somedays. Stay strong and know Mason will join myself and other heart survivors to live a beautiful life!! Keep fighting with him! I have shared Mason's story with others who also send prayers and healing thoughts.

Traci
SVASD and PAPVR diagnosed as an adult; OHS 2004

Jamie said...

Those pics really put it into perspective! Poor little guy! We're praying he can get all those yucky meds and run and play soon!

Mindi D said...

He looks so sweet:( Thanks for the update.
Mindi

Melinda May said...

Prayers all over are coming your way. I have been reading for about a week now. Expecting #3, I cry every time I start reading the first sentence. Mason is truly SO blessed to have you there. Being so strong. There are a lot of us out here that aren't that strong. Reading from past posts. You two were meant for each other down here on earth. He needs you! Stay strong and know that there are people praying all over for this handsome, strong hero.
Thank you for sharing your story with strangers.
~Melinda May

Melinda May said...

So sorry to post again but I have done this before for itchy, itchy skin. Pour cornstarch into your bath water or dust it onto your body. (where it itches) or apply Burdock root oil to the skin to help with itching.

Good Luck!

Jennifer said...

I found my way here through Moriah's site. I also have a son with CHD, and he's undergone 2 open heart surgeries and awaiting another. I learned from another heart mom that when a child is itching as a side effect of meds to give him Benadryl--that helped her then 22 month old son with the itching. I will pray for your little boy and your family.

May Peace be with you

Emily@Little Forever Family said...

Hang in there Summer (and Mark for that matter.) Baby steps, these kids are so well known for baby steps. He is just such a beautiful guy (sorry to say that about a boy, but it's true!) I cannot wait to see him free from the tubes and vent! Yeah for extubation!

Anonymous said...

May all the love pouring from us to you be with you! Such strife and damn it's hard for Mason and you!

Stefenie said...

Poor little guy! I'm still praying for Mason and for all of these roadblocks to move out of the way so you can focus on his healing! Hang in there!

Tiffany Lockette said...

Praying for Mason with all my heart.

Anonymous said...

It's got to be so frustrating for you; 2 steps forward one step back... Added onto that is having to do it by yourself! (not counting your Heavenly Father of course) It's so tiresome having to be there watching every minute you can with very little sleep and the sleep you do get isn't really restful. Know that so many people are praying for your family and also the Doctors/Nurses taking care of Mason that they'll be able to figure things out and put him on the road to getting out of there!!

Shanna said...

Summer,
i know how frustrating this can be. I am thinking of you guys and fasting for Mason today. ;) He is such a sweet little guy. I commend you on being such a wonderful mother. You are so strong, being away from home is not easy, you are amazing. I know it's prayers to our heavenly father that gets us through each trial we face.

Thanks so much for continuing to keep us updated. Especially in times when you probably don't feel like writing.

Best

Little Bear and Peanut said...

I haven't met you yet, but I am a heart mommy in the Salt Lake Valley. Your family and Mason are in our prayers!