Damon got his blood drawn again this morning to test his sodium level and it came back the same as yesterday, still too low. He was given the same instructions as yesterday, just to eat and drink a lot and play. Problem he isn't wanting to eat or drink a lot and is mostly wanting to lie in bed and watch t.v. I think he will get more active once we get home, but he just has no energy right now. Even stuff that he likes to do usually he isn't wanting to do now. He also is having a hard time with keeping things down. He has thrown up once today and has wanted to throw up more, but we've been able to talk him out of it. Please pray that his sodium level is up tomorrow, that he will have an increase in appetite and thirst and that he will not throw up anymore. Talk to you all soon.

Sarah

Damon hasn't thrown up any today so far, please keep praying that he will be able to keep down everything he takes in. He was still kinda restless during the night but overall slept pretty well. His blood was drawn early this morning and he has a low sodium level so he needs to eat, drink, and play. Those are drs/nurses orders for today. He also had another echo this morning and will have another chest xray just to make sure he doesn't have fluid collecting around his heart. We haven't heard anything back from those yet. He will have to stay until tomorrow. Talk to you all soon.

Sarah

Damon got all of his drains and pacer wires taken out this morning as well as his last iv, the central line up by his shoulder. This is kinda painful and he did cry and wiggle a little bit but he did so great. He has really been a champ this whole time. He also had the xray, ekg and echo today. So I'm not sure medically what is on the agenda for tomorrow but he is doing so great. He has lost some weight since surgery, and isn't eating all that well. His choices are limited since he is on the low fat diet so pray that his appetite will increase and that he will be interested in eating the things he can choose from. The nurse said today that he will have to be on that low fat diet for about six weeks. We haven't been told anything different about going home so for now it's still Saturday.

There is going to be a Halloween party in the playroom tomorrow morning and then trick or treating on the 3rd floor in the afternoon. He said tonight that he didn't want to do it but hopefully he will feel up to it. That's the other thing, he is tiring out easily. He only spent about 15 minutes in the playroom tonight but after all that he went through today I can't blame him. Pray that tomorrow he will have a little more energy. Talk to you later.

Sarah

Damon woke up in a bad mood this morning. He wanted everyone other than me. He was grouchy and cranky and just didn't want to be messed with. He went poop this morning which is a good sign. They were going to start him on stool softner today but now he doesn't have to have it. And when the drs rounded they said his respiratory treatments could stop. He was being woken up every 4 hours for those during the night and he really didn't like them at all so that was also a praise. I left him with Jeremy about 10:30 and came back about 2pm. He was up in the playroom and when he got back he was in a much better mood. He was telling me about all the things he did up there. He got to go down to the gift shop for a few minutes and picked out a medicine kit and a doctors coat as the toys he wanted to buy. He hasn't tried it on yet but I'm sure he is going to be sooo cute! His drainage has went down to almost nothing since yesterday. This is the biggest praise of all because sometimes there can be a lot and that can keep kids in the hospital.

Dr Huddleston came in just a few minutes ago and said that as long as his drainage keeps going like it is he can get his drain tubes out tomorrow and hopefully he can go home on Saturday. Please take this news with a grain of salt because things can change in a matter of minutes. It has happened to us before. Once we were told everyday for 6 days that we would be going home that day and one thing after another kept us there. But I know that God is faithful and He can make it happen so pray that Damon will stay on the path to complete recovery. Pray also that his mood will be lifted and that I can think of fun things to keep him occupied. Pray for my mood as well. Pray that his energy level will increase and that he will not have any pain or discomfort from getting out of bed and walking. Talk to you all soon.

Sarah

Damon got to go up to the playroom today and he made some cupcakes. He also played with toys, painted a little and then got to decorate his cupcakes. He was walking a little which is a good thing for him. He seems to be in a better mood today. Still not my silly, happy little boy, but talking more and laughing a little bit and smiling more. We played a couple of games together and he beat me at both of them. He is still draining lots and lots out of his one drain tube so they are putting him on another diuretic to help with that. They put him on a med that will help dry up the fluid around his lungs and they also are going to start him on a baby aspirin today which he will take for the rest of his life. They are going to be stopping his heparin (blood thinner) some time very soon since aspirin is also a blood thinner. He is still getting iv fluids too. So every time we go anywhere other than bed we get to push the iv pole around with us. Kinda bulky but worth it for him to get to do something other than watch tv.

He almost choked today at lunch and it scared me to death but God be praised, he coughed it up. God is really watching out for him. We still have no idea when we will be coming home. No one has even said anything about it. It all depends on that drainage so keep praying for that. The med they are giving him to help dry up his drainage isn't going to start taking effect for 48 hours and he just got his first dose today. It's a long road but he is healing up just fine. That's all I got for now, so I'll talk to you all soon.

Sarah

As of this post Damon has been taken off his O2, he only has two iv's left, one in his wrist and his central line. They are going to be moving him to a room on the 7W floor today, which is the step down unit. He is also getting one of his drain tubes taken out today because it is hardly putting anything out. All those things are fantastic. He is also eating now.

Things to pray about. He seems to be a little down and depressed. He won't look at anyone when they talk and he won't respond to hardly anyone. He is talking some, but only limited. He's been watching t.v. pretty much non-stop. So pray that his spirit will be lifted and he will be able to find some fun games or toys to play with. He has been put on a low-fat diet because the fatty foods he likes the most are causing a lot of fat to drain out in his drain tube. So it will be a little bit more of a challenge for him to eat since high fat foods are his favorites and he's pretty picky. And I know this is still probably a while off, but pray that when his bowels wake up that he won't get constipated. He had such a hard time with that his whole life and I don't want that to become an issue while he's recovering from surgery.

Also, things are stressful here anyway, but now that Jeremy and I are divorced it's harder so please pray that we can all be mature and focus on Damon. Thanks for the prayers and love. Talk to you soon.

Sarah

Damon was still pretty restless last night. I'm not sure if he was up every hour, but I was. He is still doing the respiratory treatments where they tap his chest with a face mask to break up the congestion in his lungs. They have also added another treatment where they put a face mask on his face and when he breathes in it forces extra air into his lungs. The point is to try to make him take deeper breaths. These seem to be working because his sats are getting a little better. Enough that this morning they took him off the high humidity nasal canula and put the regular one back on him. They are wanting his sats to stay above 80% and several times last night they came in and found his oxygen not even on his face so he's doing better.

He is also getting up now to go potty and is moving and talking more. He is giving me fake smiles whenever I ask for them and even wanted me to snuggle with him in his bed last night, which I was happy to do. However, while trying to get him comfortable in bed with me lying next to him, he got sick to his stomach and threw up again. He still is not able to drink anything but water and sprite. When I left this morning they were going to try to give him a popsicle and see how he did with that. Keep praying please. He's getting better, but slowly. Talk to you soon.

Sarah

Damon had a really restless night, his sats were dipping down so they put him on a different nasal canula that is high humidity. They also started a respiratory therapy treatment where they essentially pound on his chest to help break up the congestion that is there. It doesn't hurt him at all, he actually sleeps through it most of the time. This morning he was doing better as far as his pain is concerned, they are going to try to give him tylenol to control his pain instead of any narcotics because they think that the narcotics are one of the reasons he isn't breathing as deeply as he needs to. They are going to get him up in a chair today to see how he tolerates that and they took out the big i.v. in his wrist, his arterial line, and they also took out his Foley catheter (the one he pees into.) He still has two ivs left and two drain tubes and pacemaker wires in his chest that will come out before too long. I have been at the Ronald McDonald House a lot of the day doing laundry and cleaning up. Munkin is there with him now.

Some people have been asking what exactly they did. Short version is that he had an open heart surgery where they moved some blood vessels around in his chest to make all his blood go into his lungs first instead of his heart. That's all I have time for right now. Thanks for the continuing prayers.

Sarah

Damon got out of surgery yesterday around noon and was taken up to CICU to recover. He will stay there for a few days then move out to the floor for the rest of his stay. He did really great and Dr Huddleston said everything went great. He rested for most of yesterday. He was waking up a few times wanting a drink of water. He could only have an ounce at a time. Through out the night he was getting sick and throwing up. He also has some congestion in that he needs to cough up but it's painful for him to do so. He's in pain today and just feeling icky, but overall doing really well. Please continue to pray for him. Sorry I haven't posted before now, just havent had a chance.

Sarah

We got to St Louis on Tuesday and spent the afternoon at Swing Around Fun Town. The boys had a great time winning over 2000 tickets to get prizes!

Wednesday Damon had all his pre-surgery tests including an echo, an ekg, a blood draw, an x-ray, and a nasal swab test. Then we talked with the anesthesiologist and the nurse practitioner for the surgeon. She explained the procedure Damon is having.

We had to be at the hospital today at 6:15. They took Damon back to a room and got him in his hospital pj's and gave him some Versed to make him relax so it would be easier to take him back. He went back to the O.R. about 7:30am. We all went down to get coffee and breakfast. I came back up to the waiting room and Dr Huddleston, the surgeon came in to meet us and answer any questions we might have. He said minimum stay in the hospital is about 7-8 days with two of those days being in the CICU. The main issue that keeps them in the hopsital after this surgery is the extra fluid around the lungs.

They will be giving us updates through out the surgery and I'll update here as much as I can. Please keep praying.

Sarah

One week from today my son will have his third open heart surgery. I can't believe it has finally come to this time. Yesterday was a hard day. I pretty much cried every time I looked at him for most of the morning. I know God will be with all of us through out the whole thing, just as he has been every day of Damon's life. But I'm having a hard time seeing past the surgery and all the hard times coming in the next few weeks to the good outcome and how much better he is going to feel. I'm not surprised because it's always been hard for me I just wish I could be better at keeping my emotions in check in front of Damon and Myles.

So here is the plan for the rest of this week and next. Tomorrow we are just going to enjoy spending time together and I'll probably pull the suitcase out of the closet and think about filling it up with clothes. Saturday I'm hoping to be called off work, but if not, I'll work until 7pm and then we're going to a get together for some hot dogs and smores. Sunday we'll be at church, then we are going to my mom's for some more hot dogs and smores. Monday I have to work so the boys will be spending the day with Munkin. I'll probably be packing after work which means I'll be up late, yay! Tuesday my mom and I will leave for St Louis with the boys. Our plan is to take Myles and Damon to the Magic House and to Grants Farm. We want to do something fun with Damon before surgery since he probably wont be able to afterward. Wednesday are all of his pre-surgery appointments. We have to be there at 10am and I'm guessing we wont be leaving the hospital until at least 4 or 5pm. Then Thursday is surgery day and I'm guessing we'll have to be there pretty early. That is the plan that I have right now. I hope I didn't just bore you all to death, but I thought some of you would like to know what we are doing. I know you are praying; thank you so much. You have no idea how much that helps and how much it means. I'll keep updating as much as I can. Talk to you soon and God bless.

Sarah

A t-shirt has been designed for Damon and is being sold to benefit Damon and to cover expenses while we are in St Louis for surgery. The t-shirt will be gray and will have a cartoon drawing of Damon holding some balloons and his buddy Growler too. The back will say Bless Damon's Heart. The shirts are very cool and come in any size from 18 Months to 3XL. They are $12 a piece. We are placing an order this week. If you would like to order a shirt and have it get to you asap, please email me at mesarahb@att.net