Wednesday, November 4, 2009


Found a loop-hole in the Children's healthcare system and am able to do a quick post as Matthew just went down to bed...hopefully. Yes, we are still here, but more on that later (see his caringbridge site for full updates).
Being in patient, I was able to witness a beautiful moment today. The first steps into a new life. A liver patient received his life saving gift over three weeks ago. Since then his tiny 8 year old body has been wracked with pain...mind numbing, gut wrenching pain. The doctors finally listened and reopened him to find a MASSIVE infection growing right next to his new liver. If left in much longer, the liver would have not made it. He arrived up from PICU yesterday. This afternoon, he took his first steps down the hallway...steps into a longer, healthier life full of possibilities. Everyone came out of their rooms and even the nurses and techs stopped to watch and then clap. Teary eyes were abdundant! It was beautiful!
Today I found out my son was developing congestive heart failure. Something a mother doesn't want to hear about in the first place, let alone on a child that is 16 months old. When they placed his new catheter, they ordered a chest x-ray to make sure the lungs weren't nicked and they were in the right artery/vein in his heart. They found fluid in his lungs. The next day they ordered an ECHO and an ultrasound of his heart. They found more fluid and that his ventricles were enlarged and thickening. He has had dialysis every day this week so far and will continue to have it every day until he is well enough to go home. They are drawing off as much fluid as possible. He has lost 2.5 pounds of fluid in two days. Blood pressures have come down from dangerously high numbers like 180/122 to 138/74. It's working.
He's not well enough for a transplant...he's not even well enough for them to put tubes in his ears like they thought they would do while we were here. But he is happy. He is smiling. He is "talking". He is pointing out every balloon in the hallway and picture on the walls. Everyday they have given me "worse" news by lunch time, after their earlier diagnosis of "maybe you can go home today". No, as much as I don't like to admit it...Matthew is a very sick little boy right now. But he is getting help! They are doing all they can for him, ordering procedures, radiology and labs to figure out this little puzzle that is my son.
If you had talked to me this morning, after getting 2.5 hours of sleep, you would not have recognized me. I have extremes...highs and lows...always been that way. I do tend to cover things up with my dry sense of humor...but those that know me can see through that. I was hurting for my son this morning. Hurting for his future and how unclear it suddenly was becoming.
Then I saw David, the 8 year old, and he inspired me. Kids do the darndest things, but inspire is not usually a word associated with an 8 year old. Crazy, overwhelmed, frustrated...those I hear more frequently. But I see little David and how far he has come and I look at Matthew and see how far he has come. From the threat of termination to the treatment of a transplant waiting in the wings. He's a fighter. And no diagnosis is going to keep him down! He won't allow it. I won't allow it! No need to hang my head and cry (hello - we all know Atlanta is a little flood happy at the moment). So if he is refusing to throw in the towel and start all the "why me's?"...well, why should I? We are going to keep pushing through until he is well and receives his transplant. We are going to fight this new battle because I'm a mom of a soldier boy. We are going to laugh and say statistics be damned, because they have never meant anything to us before as Matthew has always been the exception. We are going to go from one extreme of poor health to another of optimal health...because that's all we can do.


Erin said...

Hang in there! That is amazing about the liver transplant. I firmly believe doctors should listen a little more and talk a little less but that's just MHO. Keep fighting for your little guy and I hope he and you get to go home soon

Mindy Skains Barefoot Book Ambassador said...

I am praying for you all.
I know the Lord is with you all.

God Bless said...

I am praying for you guys! It seems all of our dialysis baby buddis are having a rough week of it. Prayers to all the little (and big) ones on dialysis!

Randi Jo :) said...

u are such a warrior mommy! and matthew is such a soldier. You all are doing so good valuing life as much as you can and fighting for the beautiful precious gift he is! Keep on keeping on girl. and days when you can't - lie on the bed and cry it out. and then get up and take another step. lots of hugs and love. Pray for you every day. for strength, comfort, wisdom for doctors, healing for matthew.
Randi :) said...

I just read Matthew's caringbridge site and I'm so glad that he should be going home soon and that the damage seems to be reversible and that you guys have found a match! Praise God! I will be praying hard that there are no antibodies after this blood transfusion and that the rest of his time on dialysis in uneventful. I hope you feel better soon as well!

Kait said...

Hi Carebear,

I posted on Matthew's caringbridge site, but wanted to do so here as well. Is there anything y'all need? I'd be happy to do anything I can to help!

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