Monday, November 1, 2010

what a treat

Halloween - the day everything started happening last year. The day I noticed dangerous signs in my son.
We had gone over to my in-laws house to trick or treat with Woody the cowboy and a frog. The night ended with my husband and I taking turns listening to our son sleep in the night and making sure he was still breathing. The day before, Matthew had been to Egleston for dialysis. We were supposed to trick or treat there on the transplant floor. He came in costume and we got lots of oohs and ahhs. :)I took a picture with my phone of my little frog. That was the only picture we got of him in costume. He never got to go trick or treating on the transplant floor after his hemo session. He didn't get to go the following night on Halloween either.
An hour into dialysis, Matthew's catheter began to "suck" - meaning air was being pulled instead of blood. When that happens your blood clots. A clot during dialysis can be deadly. They flushed huge amounts of saline into his lines to keep the flow going...but it still clotted off.
Our dialysis session lasted 6 hours - but in that time we only had one hour of dialysis. Matthew was severely overloaded with fluid and was having problems breathing on Halloween night. They scheduled a permacath replacement for Monday morning. Twenty four hours after the new dialysis catheter was placed we were told our son had congestive heart failure. The fluid in his lungs was causing the breathing issues. We stayed at the hospital for 10 days - having a 4 hour dialysis run every one of those days except one off day and we added numerous blood pressure meds. I was given the news my son was fading and we had to find a donor - quick!
I've had many "worst days" - that ranks number one. I've been told my son wouldn't survive fetal surgeries, birth, dialysis, surgery when his potassium was critically high...but in all of those I had hope. All of the things we were doing, we were doing it to help him out. Now what was "helping" him (dialysis) was slowly killing him. It was much too harsh on his tiny body. The nephs told me at the beginning that the chance of him making it to one year on hemodialysis at his size and age were practically non-existent. He made it 13 months. :) But he wouldn't have made it much longer I'm sure...
Last year was HARD at this time. Very, very hard. Being a mom is hard, being a caretaker for someone that is sick is hard, being an advocate is hard - being all three at once - its indescribable.
This Halloween I took a racecar driver and a stink bug out to trick or treat. Both were running up driveways carrying pumpkins and making adults everywhere laugh out loud at there antics. Matthew would "treat, treat" whenever a door was opened and happily shout "appy Howie ween". He stayed up late and we divided candy. We watched Wow Wow Wubbzy's Halloween episode on tv and just laughed and cuddled, going back and forth between couch and floor depending on where big brother was. (Matthew can't get enough of his big brother!)
Halloween is now my new favorite holiday because it will now symbolize nothing but treats for our family. Good memories, sweet moments and the cutest little boys having so much fun together. Yep - surely beats last year...hands down!


babyfordawn1983 said...

This just goes to show you that when God is ready, He can really move mountains that everyone else thought were impossible to move! Thank you Jesus that Matthew is feeling so much better! I am so happy that you are able to enjoy your healthy family on such a fun holiday and many more to come. And I am also very thankful to have you in my life, even if it is just through Facebook. You were there for us when we were going through the hardest thing in our life. Love ya!

Randi Jo :) said...

awesome! :) we love you and pray for you! I literally can NOT wait too much longer to hold him!!!!!!!!!!!!!!!!! when when when? How can we make this work? can we meet somewhere in the middle just for a fun weekend!?

Randi Jo :) said...

p.s. i want to see halloween pics

Swidget 1.0