Thursday, June 14, 2012


Tayton had surgery today. He has had reflux since he was born. He didnt gain any weight as a baby and spit up EVERYTHING ALL THE TIME!! They thought it might go away by the time he was a year, chalking it up to reflux after they did countless CAT scans and MRIs and xrays and could find nothing. They didnt want to do an endoscopy or colonoscopy till he was two. When he was 18 months and nothing had changed, the poor guy threw up everytime he burped and if we were late on a dose of medicine he would throw up whatever he ate, they decided that it might be a twisted asaphagus and would need surgery to fix it. He has been a trooper and doesnt hardley ever cries, except at night when he is asleep and its painful and then the poor guy whimpers in his sleep A LOT, it makes me so sad to hear it, I want to go in and hold him and make it all better. So today was the magical day, he is finally two and they could go in and see what was wrong. If it was the throat they would fix it with a quick surgery.
Tayton came through surgery fine. He didnt even cry when they put him out (he did convulse a lot and his eyes rolled in the back of his head. His breathing got really labored and made me want to cry. They did warn me about all of this so I was prepared but I still wanted to cry) He didnt cry when he woke up or when they pulled the tape off and took the IV out. He was a trooper, they were going to keep him out until after they took the IV out, but I knew he would be fine. He woke up before hand anyway and they gave him a popsicle and blew a bunch of bubbles for him while he adjusted to being awake. He was so sweet. I just held him and he snuggled in close, not ever uttering a peep. The took the tape off (and there was a TON of it) and then pulled out the IV and he just layed there watching them do it all, again never making a sound. Everyone commented on how amazing he was and how he was the best 2 year old they had ever worked with. The anesthisiologist kept telling me that he would fight it when they put the mask on and so we would have to hold him down and not to be alarmed. When he got into the OR they put the mask on (which had bubble gum flavor on it) and the tech pulled out his Iphone and put on some cartoons for Tayton to watch and narrated it for him while he held the mask on. Tayton didnt fight, he didnt budge he just held my hand and layed there. Such a sweet sweet boy. Everyone in there was blown away by how well he did. I had no less then 10 people come talk to me to tell me how amazing he was and how they had never seen a 2 year old so calm and sweet. It was proud to call him mine.
 After the proccedure (which I could follow on the awesome digital board at sunrise hospital, well I could only see a break down of what was happening in writing) the doctor came out and showed me the pictures and told me what he saw. So it turns out he didnt have a problem with his throat like they originally thought (which would have been a quick one time fix). His throat and stomach are fine but his intestines are all messed up. The villa are dead and missing in places and his intestines are very inflammed, they also think they saw some ulcers but they couldnt get close enough too them with out puncturing through the wall. They did do some biopsy's and should know more by friday. They are leaning towards ulcers  and ulcerative colitis (this would also explain a lot of his other symptoms, like painful swallowing, random fevers, rashes, lack of weight gain, and malnutrion) and/or celiac. If its ulcers they need to figure out why he is getting them (probably from the ulcerative colitis, but again why? and what to do to fix it? diet? ect.). So now we went from a quick fix, to a life long illness that will not be fun to have or lots of meds and pain off and on (remission and withdrawls) for the rest of his life. I am anxious to find out what the test results show. I am glad that we are on the way to figuring this all out for the poor guy, but Im sad for what the future may hold for him. In the picture you see his (from top left to right) asophagus, stomach, and then his intestine, In the bottom left picture if you look on the top center you can see one of the ulcers (its a little pocket looking thing)nand then if you look for the little tiny pockets of white villa (kind of litle the suction cups on octopus's tenticals) you can see some sections of them and some sections where they are missing.
He got a cute little gown and socks and he kept telling me over and over again while rubbing his tummy, "I cute!" yes my dear beautiful baby boy you are.
They had a tv in his little room with Mickey Mouse playing so he ran around saying "Toodles" "pluto" and "donald" over and over. Everyone who walked by told him how cute he was and he told them all "Hi buh bye".

 There was a very awesome room with lots of toys in it for him to play with while we waited. We walked around the floor in a car and then he played with a bunch of toys, that he had all to himself without anyone he had to share with. He was in 2 year old heaven. It was so fun to watch and get to spend time with him and not have to take time out to help or listen to his brothers. Its so fun to get to have my kids in some one on one time. It sucked that it was a surgery that made this one happened, but I really enjoyed spending time with him non the less.
I love his cute little diapered bum sticking out of his gown.
 I love to see him consentrate on things and to watch them work and function. I can just see the wheels in his mind spinning so fast trying to figure out how it is all working. He loves to carry things around with him, he puts as many things in his arms as he can, and he also uses his mouth as a hand too,

 I just adore this little man! I want to squeeze him and hug him and kiss him over and over and over again. He smells so yummy, he is so soft and warm and sweet and his hair is so fluffy. I watch him and hold him and I dont want it to be over, I dont want him to grow up so fast, Im not ready for this sweet little learning stage to be over. Before I know it he will be married and gone with his own little men (and women) so I better just enjoy as much of him for as long as I can.

 He loves to tell us to go, go, go! When we are driving, if we are stopped at a light or in slow traffic he will say "Momma (or dadda)" and when we answer he will say "go, go, go". when he got in the car he immediately started to yell GO GO!!
 His poor little hand was so swollen after he got the IV out. The picture doesnt do it justice, the poor little man had a big swollen pocket sticking up from his skin.

1 comment:

Mari said...

Wow. My heart goes out to you. That is also my fear of surgery for Henry going from a "quick fix" to something more severe. It sounds like he is a real trooper. So cute in his little gown. :-) Best of luck to you and your family!