Sebastian's cath went well. They had to balloon open a couple of veins and an artery they couldn't open them as much as they wanted because it was to soon after the open heart. They also had wanted to put in a stent to keep open the artery but they were unable to get it in. It's fine for now but we most likely will need to go back in and reballoon. He looks great and is happier then he has ever been.
The best news is that we are a family again. Amy took great care of Emmalee and Dominic. I am blown away by how much they have grown up.
Monday, June 16, 2008
Friday, June 13, 2008
So Close
We were almost home. Last Thursday I dropped my mom off at the airport with the plan that she would pick us up Friday and take us to Denver Children's. After I dropped her off we went to the Dr's for another check, Dr Tabbutt said that she would go over the results of the Echo and I should page her that night to get the results. At 3 she called me to tell me we were not able to go home. Sebastian seems to have a road block in his heart. Where Dr Spray stitched his veins it has become too narrow and is causing the blood to be backed up in the head. So I started calling everyone I know out here to hang out with. I got to spent the day with April and Marley is coming up to hang out on Saturday. We spent the day with Melissa and Justin. Justin was born two days after Sebastian and he has HRHS. So the joke is that the two boys are sharing one heart. I went to Amish Country with Judy. We went to church with the Thiroits and went to Daniels B-day party last night he just turned one and is doing great.
Today Sebastian is in the hospital for a cath, they are going to see if the narrowing is really blocking things and if it is they will either open it with a balloon and if that doesn't work they will put a stunt in it. So we shall see what happens.
I did get to see firefly's for the first time last night at Daniels b-day. I was so excited I called Emmalee and Dominic and they did not care at all, I was so bummed. Emmalee kept asking about the purple shoes that I told her I bought her the other day and Dominic was like whatever. I called Austin to see if he would care and he just wanted to talk about the hockey game he was in. He said he won the Stanley Cup. Which I guess trumps firefly's.
Today Sebastian is in the hospital for a cath, they are going to see if the narrowing is really blocking things and if it is they will either open it with a balloon and if that doesn't work they will put a stunt in it. So we shall see what happens.
I did get to see firefly's for the first time last night at Daniels b-day. I was so excited I called Emmalee and Dominic and they did not care at all, I was so bummed. Emmalee kept asking about the purple shoes that I told her I bought her the other day and Dominic was like whatever. I called Austin to see if he would care and he just wanted to talk about the hockey game he was in. He said he won the Stanley Cup. Which I guess trumps firefly's.
Wednesday, June 4, 2008
Circ de woes
Well I am madder then a hornet. The stupid guy who did Sebastian's circumcision messed up. The skin was so swollen that it came up and over the crown and started to seal it shut. I never asked about it because there where multiple nurses who saw it and they didn't say it didn't look weird and I thought it would start to look right when it healed a little more. Nope not the case. Our Dr brought in an Urologist, he brought in a surgeon and he brought in the guy over urology. They all said something went wrong. We went and saw the surgeon who did the surgery and he pulled the skin apart and open "ow". Then he said every time I change his diaper I need to pull the skin and pop the crown out. I am not happy about this. We are going to see an urologist when we get back hopefully he can do something to help the swelling and keep the skin where it belongs.
Sebastian still is not eating as well as he was before the surgery. He finally ate two bottles at 4 oz each so maybe we just need to give him more time. We get to go back to CHOP for one more visit and make sure he is fine.
On a bright note we are going home on Friday!!! I am soooooooooooooo happy this could have been so much worse we have been so blessed.
Tonight we had the BEST dinner I have had in a long time. We went to Bahama Breeze wow it was so good I even cleaned my plate. I had chicken with green beans and rice with a black bean sauce. Then I got a side of their BBQ guava sauce that was amazing. I think that is my new favorite restaurant.
Here's a recipe for the Guava BBQ Sauce I can't wait to try it.....
http://recipes.chef2chef.net/recipe-archive/08/054721.shtml
Sebastian still is not eating as well as he was before the surgery. He finally ate two bottles at 4 oz each so maybe we just need to give him more time. We get to go back to CHOP for one more visit and make sure he is fine.
On a bright note we are going home on Friday!!! I am soooooooooooooo happy this could have been so much worse we have been so blessed.
Tonight we had the BEST dinner I have had in a long time. We went to Bahama Breeze wow it was so good I even cleaned my plate. I had chicken with green beans and rice with a black bean sauce. Then I got a side of their BBQ guava sauce that was amazing. I think that is my new favorite restaurant.
Here's a recipe for the Guava BBQ Sauce I can't wait to try it.....
http://recipes.chef2chef.net/recipe-archive/08/054721.shtml
Monday, June 2, 2008
Almost Home
Today we are in limbo. Sebastian is still fighting to have a BM and they are working to find the right balance with the meds. He was on a hunger strike, he lost wight and just would not eat. So last night we had to get a new IV in. He pulled out the last one. He is eating a little at a time today 1.5 oz very 2 hours. I'm not to comfortable with that but I guess thats life. They did some blood work and said his hemoglobin is high...way high but no idea why. We have bee told maybe we will be discharged tomorrow. Which would be totally cool. He is working on a tooth and playing with toys but still not really comfortable. I hate that they grow up so fast.
Emmalee and Dominic are having fun and hopefully so is Amy and Kermitt. Emmalee was in trouble when I talked to her last night and she said she wanted me, only if I get her out of trouble. Dominic was happy and that makes things easier for me.
Emmalee and Dominic are having fun and hopefully so is Amy and Kermitt. Emmalee was in trouble when I talked to her last night and she said she wanted me, only if I get her out of trouble. Dominic was happy and that makes things easier for me.
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