Our Miracle Boy

Well we just saw our little man. He looks amazing. I don't even know how to begin to write or say how I'm feeling right now. It is a mixture of excited to potentially go home, nervous to go home and have a imuno suppressed child, at peace, thankful, and scared. But most of all greatful that our son has been giving a second chance. The Lord has watched over Parker and our family through these last four months. We will be always thankful and happy with so many things. The people that we've met, the surgeons, doctors, residents, nurses, child life, all kinds of theripists, and all the rest of everyone that helped and were a part of Parkers care. We just saw him go past on the bed and he looked so good. His oxygen was sitting at 100%, and he has never been that high, ever. He was in surgury for 10 and 3/4 hours (3:45am-2:30pm) the time we dropped him off to the time we saw him roll by us into the PICU. Surgery went really well, he's pink in his hands, feet, and face. I know that this is just the start of some different problems and transplant is never a cure but he's here, he will be able to grow up and play like a "normal" boy. I'm so glad that he's had this opportunity. Parker you are our little big miracle.

We Got The Call. Wahoo!!

Today at 3:45 Dr. Ross (Parkers heart surgeon)came to talk to us. He said "I think we have a heart for Parker it's looking really good And it's a good fit for him. Jim and the kids were here at the hospital too, so we got to hear the news together which was really cool. All the nurses were starring at us from the doorway smiling because they aready knew but couldn't tell us till the doctor told us. So Dr Ross and the transplant team all go on a private jet and phisically look at the heart to make sure it is in the condition they need it to be and to personally pick it up and bring it back here. He said that Parks will be going down to the OR at about midnight and then the heart will get here at 4 or 5. So they will do all the pre transplant stuff ( blood work, intubating, putting him to sleep just getting everything ready) so when the new heart gets in the room the old heart can be taken out and the new put in. Lots of you have already wrote to us and said that you'll pray for him tonight, so thank-you. We will keep you posted on the latest news through the blog.

In The Big City

HE'S MY SON

When my mom and sister and I went to Womens Confrence they had a concert for us on one of the nights. There was a man that sang a song and the words of it fit to our situation so well. Leslie my sister just sent the song to me and then Jim put it in a slide show. I wanted to share it all with you. I just love it and it brings me to tears. So enjoy!!

Great People!

This last two weeks not too much has happened with our boy!! He's actually doing quite well. We just got over a full 7 days diarrhea and some puking. I thought he some kinda flu but they clutured everything blood, pee, poo, everything came back negative. So with him still not feeling great I kept thinking what it might be. I started him on homo milk at the beginning of last week so I thought it might be a milk sensitivity. I gave him soy milk and it cleared it right up, the next day was way better. He is drinking lots better and eating lots too. The dietian commented that maybe we would be able to take his tube out soon!!! That is good news yea for Parker, although then he will have to take all his meds by his mouth.

Parker is so happy and is so pleasent to be around. I'm so grateful that he is at a good place right now. He loves all the nurses and Doctors and all his other people that he loves to come and say hi to him. He has some very favorite people. Besides his awesome family; 1 --> he loves Judy, she's with child life. She comes to visit him every morning and is very animated and so fun. 2--> He loves Holger he is his Doctor. He is a 6 foot something big German man. He plays with Parker and really cares about him. 3--> He loves Susanne, she is his Physical therapist. She is also so animated and also comes to visit him everyday.

We are surrounded by people that care about us and want the very best outcome. I'm glad that we can be in Edmonton where we are getting the best care and are surrounded by amazing people.

The touch of grass

Today we were able to take Parker outside. It was the first time that he has touched grass or anything natural in a long time. Always being in the hospital and only being allowed to go on walks when a nurse is with us limits the opportunities. Today was a beautiful day, so we were able to find a patch of grass and an electrical plug close by to plug Parker's Berlin Heart in.



He was not impressed. It took him a while to get used to it, but he came around and started to enjoy himself.





This little boy loves his blankets, he has about 6 flanelettes that I have made and it doesnt matter which one it is, he loves them all equally. It is so cute, he stuffs them in his mouth just like Kaden did when he was small and goes to town. He gets so excited when he sees them he has a little happy freak out!!

A Tribute to Jonas Konge

When we got to Edmonton we met the most amazing family. These people were to become some of our closest friends. We met when our boys were side by side neighbors in the PICU. Parker was just getting ready to get a pacemaker put in. Jonas was going in to get the fontain surgery, the second surgery that Parks was supposed to get, before his heart went into failure. They knew that this was going to be a difficult surgery but they were willing to try, before listing him for a heart transplant. The surgery went well. He came out and was extibated. The surgeon was checking up on him and saw something and then proceeded to open him back up. When he got in there his heart disintegrated in his hands, so they took out his heart and put in a gortex bag. They put some cannula's into it and put him on an artificial pump. And from then on he was like a science expiriment. Never had they done anything like it before. The next week Parkers heart was continually getting less and less function so they put him on the Berlin Heart. Two days later Jonas was put on the Berlin Heart also. He was extibated again which totally blew most people away. He was responsive and awake, asking for pink swabs and wanting stories, and cuddles from mom and dad(Renee and Niels). The doctors, the nurses, and the Konge's all fought so hard fought so hard to keep Jonas well, but no one fought as hard as Jonas. This little boy was the strongest that I have ever seen. He was always there mentally, even when his poor little body wasnt keeping up. Late last night Renee called me in the middle of the night 2:40 am and asked if I would come and be with her as they were going to operate on Jonas and she needed a friend. The Konge's are from Yellow Knife and Niels couldn't get a flight till 7:15am so I was able to stay with Renee until her family could be there. During the surgery they discovered that his organs were starting to die because of poor profusion. They told her that there wasn't much else that they could do. They were able to call all their family and say their goodbyes to this sweet, strong boy that they got to know in thier family. He was able to go outside one more time and he had all his family around him when he went up to a better place. I have so much love and respect for this family that I can't put it properly into words. They are so strong and I hope that we will be friends and even family in my books forever. We have a bond that cant be broke, a sick child is never fun or easy but when you have someone that is going through some of what you are, then you are connected. I love them so much and I hope that they know that I will still be here for them if they need anything ever. Our prayers are with you still and always. Love Jess and the Seelys

Rehab

We are out of the PICU once again. We got back to the floor on Wednesday I think, it has been so nice to see sunlight again, we have a window spot. Very nice. We got to go down to Physio pool today. I think Parker was excited to get out of his room, but he wasn't prepared for where we were going. We walked in to the pool and he had a little freak out, I thought he was going to jump out of my arms. He was so excited. He loved to go swimming before he got sick. This pool is so warm, it's just like a bath tub. So he sat on Susanne's lap(shes the physio therapist) and put his feet in and he just splashed and splashed, only with his right foot, the left one is still pretty lazy. He kept triing to somehow get off her lap so that he could go in deeper. With his Berlin heart and his broviac line he's not able to go all the way in just his feet can get wet. It was really good to see him getting excited, and his left foot will come.





Before we went back to our room. Parks nurse asked me if I wanted to take him outside for a bit and so I jumped at that opportunity. Some nurses are harder to try and conivince to take him for walks then others, let alone to take him outside, so we went for a little short stroll and got some warm spring rays!!! I loved it, I'm not too sure what Parks thought of it, oh well. Its good for him.

Parker got a new line

For the last two weeks Parker has been waiting and needing to get a new line called a broviac. It's for his medications to go in so that he will be able to go up to the floor and out of the PICU. Its a small little surgery that they do, the surgeon makes a little cut in his thigh and pushes the line under his skin and into a vein. It is much more permanent than an IV and they can draw blood off of it so that they don't have to poke him everyday when they need blood. Worth the wait. They have been telling us that he was an add on case for the last three days, and have cancelled on us for two of those days. At 6:00pm of Monday and Tuesday the Doctor called and said that they weren't going to do his line today so he had starved for nothing those days. Not only was Parker crabby from not being able to eat all day, but I was furious too. So we tried again today and they got him in at 3:30, it didn't take that long, he was back in his bed in the PICU by 4:45. After he got to eat he was the happiest little boy that I had seen him in such a long time. He was so playful and smiley to everyone that came around to see him. It was awesome to see so happy.