We came up to St Louis Children's Hospital yesterday and had appointments in the heart station for an echo, ekg, and chest x-ray. Damon did great for all of them, but he was a little freaked out in the x-ray. We got a room at the Ronald McDonald House, which is a blessing because it's really close and really cheap. This morning we checked into the hospital at 6:45am and they took him back to the cath lab at about 7:40am. At 9am we got an update that they had access in both his superior venacava (shoulder vein) and his femoral artery (groin) and that they were taking pictures. They just gave another update that they had found some colateral vessels in his lungs and they were closing those off. Colateral vessels are blood vessels the body grows to try to make up for insufficient oxygen supply to the body. They are not good because they take blood away from the real vessels making it harder for the body to get oxygen. They block them off somehow so that no more blood can get to them. The dr told us this morning that they are going to look closely at his pulminary artery and his aorta to see if there is any narrowing there. That's all we know for now. I'll be making updates on Facebook so if you are on there, you can get shorter more frequent updates. Otherwise I'll try to post on here again tonight. Please be in prayer for everything to go as planned and that he will have an easy time after the cath is over. He'll have to lie flat for at least 6 hours after it's over. Thanks for all the prayers, support and love.

Sarah

I got the letter from St Louis Children's Hospital about Damon's heart cath. He has to be up there on the 25th for his pre-cath tests. He'll have an echo, an ekg, a chest x-ray and then he'll have an appt with the anesthesiologist. Those all start at 11am so we'll be spending the better part of that afternoon in the hospital. The next day he'll go in early for his cath and also a perfusion scan so that will be a long day as well. Please keep him in your prayers that he will not be too nervous about any of it. I haven't really told him a whole lot yet because I don't want him to worry. Pray for me as well, it's not easy to think about all this starting again. Talk to you all soon.

Sarah

So I finally have a few minutes to update you all on what's going on with Damon and his upcoming heart cath procedure. We will be going up to St Louis Children's Hospital on August 25th and Damon will have a full cardiac workup which includes an echo, an ekg, an xray and then he will be evaluated by the cath lab cardiologist and then the anesthesiologist. Then the next day on the 26th he will have a perfusion scan first thing in the morning and then his cath after that. He'll most likely be staying the night in the hospital because his cath will be later in the day and he will have to lie flat for several hours after its over. These will be two very long days for all of us. Please be praying for Damon to do well during these procedures and for everything to go smoothly and no complications. Pray also for them to make a decision about when the surgery will be so that we'll be able to plan a little bit. I have to figure out what to do about my fall class. If surgery is going to be before winter like they said it might be, then I will need to postpone it. But I will have to start it before we have the appointment so it's just going to be stressful trying to keep up with that. Thanks for the prayers.

Sarah

Dr Tong called today and told me that the drs in St Louis want Damon to go ahead and have his heart cath. He will most likely be having in within the next month. He also said that one of the drs who has seen Damon up there has the opinion that Damon's Fontan should be done before this winter. We had been told that he probably wouldn't have to have it until maybe a year from now so this news was surprising. I will be waiting now for a call from the cath lab to schedule a date. As soon as I know something I'll post it here. Please pray for all of us. I'm not going to tell Damon anything until it's almost time to go up there because I don't want him to have to worry about it. But I'm not ready and this is coming at a very stressful and inconvenient time. I don't want to be selfish, we've know this would eventually have to happen, but it's just too soon. I know God's timing is perfect though and I'm going to do my best to hold on to that and trust in Him. Talk to you soon.

Sarah

Damon saw Dr Tong today and it was good news again. He has gained more weight, he's up to 28 lbs!!! I thought he was going to be 25 lbs for the rest of his life. He has also grown two inches. His O2 sats were fine as well as his echo and ekg. The only thing that was off was a difference in his blood pressures in his arm and his leg, but Dr Tong wasn't worried about it. He doesn't have to go back to see Dr Tong until October. Dr T said he would send all the info up to SLCH and have the drs look over it up there. There is a possibility that they could want him to go ahead and have his heart cath during the warm months to avoid cold/flu season, but Dr T said he doubted they would say that. Thanks for reading, and praying and I'll try to post some recent pics soon.

Sarah

Damon has an appointment with Dr Tong on Wednesday. I'll do an update asap after it's over. Sorry for not posting more often, I've been working a lot. He is doing well and I expect this appt to be another good one. God is faithful!

Hayden is home from the hospital!!! We went to see him today and he looks great and is acting great. He has to keep his activity level down from what it normally is for a couple of weeks, but you would never guess that he had open heart surgery a week ago if you didn't know it. These kids are so amazing and resilient. God has been so faithful to both Damon and Hayden. We are praising Him for Hayden and for putting him and his family in our life. Talk to you soon.

Sarah

Hayden came thru surgery great. He was being kept heavily sedated because he was moving around a lot. He has come out of the sedation some and he is in a lot of pain. Please pray for him to be relieved of that pain so he can have some rest tonight. Pray for strength for Jenny and Tyson. They have to watch their son lie there and suffer and there's nothing they can do for him. It's really heart wrenching for a parent.

Hayden is Damon's buddy. They have the same heart, the same doctors, they are the same age, same color eyes, same color hair. We love Hayden a lot. Tomorrow he is having his third heart surgery, the Fontan. He is getting all of his pre-op tests done today in St Louis, then probably tomorrow morning he'll go in for surgery.

I would be a big liar if I said it wasn't upsetting me. I can't help but think about Damon going through this in a while. It's bringing back a lot of memories that are hard to remember. I have a picture of Damon right after he came out of his first surgery. I carry it in my wallet. You probably wonder why I would want to look at that, but it reminds he how far he's come and how faithful God is. But it's still hard to look at and I'm thinking a lot about that time.
I really don't want either one of them to have to do it, but it's necessary. So I ask you all to pray so hard for Hayden and his mom and dad, Jenny and Tyson. Pray that Hayden will be brave and that they will all feel the Comforter, the Holy Spirit, wrapping them up in His arms of love. Pray for Dr Gandhi, the surgeon. Pray for Damon, Myles and I because we are traveling to Lebanon today, then I'll be driving up the rest of the way to St Louis tomorrow morning to be with them during surgery. Just pray please. I'll keep you updated on how he's doing.

Sarah

It's been quite awhile since I posted anything. Mostly because nothing noteworthy has been going on, which is a good thing. I've been really busy with school and my new job so most days I'm trying to catch up on laundry. It has tried to take over the house several times.

Recently we found out that Damon's heart surgeon, Dr Gandhi, is going to be leaving St Louis Children's Hospital at the beginning of this summer. We heard he is going to move to Canada to take a job there. We are so disappointed about this because we trust Dr Gandhi very much and he's such a great surgeon. When I first found out I got upset and cried for a minute, but then God spoke to me and said "Do you really think that Dr Gandhi is the only one who can take care of Damon?" I know that God has been in control all along so I gave up worrying about it and just gave the situation to Him. He will see Damon through this next surgery, whenever it is.

Damon's friend Hayden will be having his last surgery on May 4th. They are the same age (Hayden is actually 3 weeks younger) but Hayden is a lot bigger than Damon so he is ready for his. Dr Gandhi is his surgeon too, and since he's not leaving until June he will get to do Hayden's surgery. That is a blessing. Please keep Hayden and his mom and dad, Jenny and Tyson in your prayers and I will keep you posted about him. Talk to you all later.

Sarah