Home at last

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.

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.

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

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.

Open heart Day

So today was open heart day, the surgery went by fast. I slept through most of it. Sebastian did really well. When he came out he was just as the Dr's said he would be and was blue and swollen from the nipple line on up. Can you see it? His head was massive and looked like he had gotten into a fight it was so swollen you couldn't even see his eyes. He has a migraine from all the pressure and extra blood in the head. Hopefully that will go away sometime tonight. When we came back from dinner he was covered in blankets and hot packs. He was freezing, but his color was good and the swelling had gone down. He looks so big on the bed. When did he get so big? His cry is so sad it sounds like his throat hurts and it so pathetically sad. Hopefully I'll be able to hold him tomorrow or next. They have him pretty drugged up. I can't imagine what it will be like when he's 3 or whenever they do the next one. It's so hard not to hold him and have him awake. I don't know how I'll tell a 3 year old why it hurts and why I can't do anything for him.

One day of many

Today was Ehco and Cath day. Sebastian slept for most of it with a little help from drugs and anaesthesia. He is doing well a little sore and tired. He still is very angry about IV's, I think the 11 pokes day scared him for life. Luckily they got it in on the second try. The echo didn't show anything different, the cath didn't either really but the Dr's said that they found more blood going to the heart then what they wanted and this could explain the sweating and weight loss. Just too much blood for the heart to handle. Tomorrow will be a little scary. We are Dr's Spray's first patient of the day... very nice. Hopefully it will be over in about 2-3 hours depending on what the Dr does. It will be the Glenn or a Hemi Fontan. Stephen wants the Hemi go figure. The worst is the scar tissue and getting past all that takes the longest part of the surgery. They said he could be 2 different colors after the surgery one color on top another on bottom. He most likely will make headaches due to the different pressure in the head hopefully that won't last long. Just to catch up everyone. The first surgery the Norwood gives time for the lungs to develop. The second surgery, this one routes the blood from the top of the body to go straight to the lungs and the third routes the blood from the lower part of the body straight to the lungs. The nurse said he could be circumcised and get another hearing test because he keeps failing those while we are out he so the poor little guy will have a long rough road ahead.

Leaving on a Jet Plane

Well we got a call from CHOP and they have an opening on Tuesday and Wednesday for the surgery. Sebastian has been losing weight and sweating a lot more but the echos haven't changed so they have been worried about heart failure. So we are jumping on the chance to move everything up. I'll keep you all updated. Cath and echo on Tuesday. Surgery on Wednesday.

Blogger Virgin

Alright, this is my first so bear with me... You would think that I would be a little computer savvy but I'm not. Well first things first. We are a little family of 5. Stephen and I were married in 2000 and sealed in 2002. Emmalee was born 6/26/04, Dominic 1/20/06 and Sebastian 1/21/08. I like to read, scrapbook and my personal favorite annoy my kids or hubby yea... that works to.

I'm starting this to keep ya'll in the know and because I have to keep up with my computer and crafty sister-in-law but like an sister, Kristiina.

So the biggest things going on now would be I'm becoming all domestic. I started making my own bread. Haven't brought bread in like 3 months and more importantly no one has been killed or injured from it. I also started a garden. It’s like 7x7 so way big for someone who can't even grow herbs on the window sill. We'll see a friend from work is helping me and she was a little worried about the lack of worms. I never thought I would want worms. Oh and I started a kick boxing class, watch out Chris I'm going to kick your butt for all the times you kicked mine.

Stephen has gone back to hockey!!! I am so happy for this and proud of him for going back. He has also started biking so I will have a fit and healthy honey. Who is going to be one step closer to 30 on Saturday. Haha

Emmalee went to the Dentist today. She wouldn't let them in her mouth but she showed them how she brushed her teeth and her wonderful smile.

We are still working with Dominic on using words instead of screaming. He is going to visit Amy and Kermit when I go to Philadelphia so maybe they can cure that for me.

Right now we are waiting to hear back from CHOP about Sebastian's surgery. It is set up for June 12 but he likes to throw curve balls and is sweating more then normal and has lost weight. Just over 4 oz but after the great weight gain him losing is a red flag. Both are signs of heart failure. So we are on pins and needles on what will be happening. Hopefully we will know by tomorrow night.

Well I think that is all for now hope you had fun reading.