I know several people are watching for updates. I don't get a chance to post updates every night. Today was a little better they clamped the echo machine to get a trial run to see how things looked. Kody's oxygen levels stayed up for one and half minutes before it started droping and the day before it dropped as soon as they clamped him off. They really think that tomorrow he'll have a better chance coming off the ecmo. They have been talking about closing his chest because the longer that he's open the higher risk of getting an infection. So they have been weighing that out with the other options. If they close his chest before they take him off the ecmo they'll have to move the connection to his neck. Which I really hate to have that happen. So we're praying they'll be able to take him off it tomorrow.
This has been an emotional roller coaster ride. There have been days when we left that we were so down in the dumps. This evening I feel a lot better and I really feel like tomorrow will be a good day. They did reposition him with the ventilator before we left and he looked so much better. The nurse said that his color was improving because his lungs were working more.
I really have to brag on the staff at the hospital. They have really done a great job and Kody has his own nurse around the clock that just takes care of him. Then there is someone that sits and watches the ecmo machine around the clock too. Not to mention the doctors that come in too. They have a pediatric doctor that stays in the PICU at all times too. When they try to bring him off the ecmo there is a room full of staff. They all answer any question we have and if they ask us to sit in the waiting room they always come out to talk to us. So we really don't feel like we are left in the dark.
Today Marc went and got Katie. We haven't seen her since Sunday and really missed her. Plus she helps take our mind off things and pass time by too. I'm so thankful that we have Eugene and Wilma to help take care of her. Plus all the other friends and family that have offered to help out with her. We took her to GattiTown to eat supper and play. It was so nice to see her so happy and excited to play. Hopefully we can be all home together soon.
Please keep us in your prayers. We all are struggling through this together. It's hard seeing your baby so sick and nothing that you can do to help. Katie is having a hard time too. She often cries to see her baby brother. I'll be glad to get this all behind us. I know God answers prayers and he has been our strength to get us this far.
We appreciate every thing that everyone has done for us. I can't express enough how much it means to us. If I don't repsond to your emails or comments doesn't mean that we aren't reading them. By the time we get in it's so late that I don't have time to get everything done. But it's nice to know that everyone is thinking of us. God has blessed us with a wonderful circle of friends and family. I don't know what we would do without you all.
About Me
- Jamie Jones
- Monticello, KY, United States
- Hi! For those of you that don't know me I'm Jamie Jones and I've been married to Marc for six years. We have a four year old daughter Katie and expecting a son Kody! We are scheduled for delivery June 22, 2009 I've always been a private person and didn't want my personal life posted for everyone to read. But the other night I came across a blog that really made me think different. A few months ago we found out our son is going to be born with a heart defect. So researching trying to find out as much as I can I found a family that is going through the same thing and it has really touched my heart. Their outlook and faith in God was really what I needed that night. I feel like I was lead to their page for a reason. I've thought about them often today and decided to post my own blog. We have a lot of family and friends that are praying for us and this will help keep them posted.
