Back to life

We are pretty much back to our normal routine around here, which is good for all of us. Myles was spoiled by Granny sleeping with him while he stayed with her and Pa so he is wanting to have "sleep over's" every night, but he usually goes to sleep pretty fast after I put him to bed. At Damon's dr appt with Dr Tong his sats were in the low 80's so Dr Tong said that we could take the O2 off except for at night. His echo looked good and in two weeks we are going back with a chest xray to see if he can stop taking the lasics. (Thats a medicine that makes him pee a lot to get fluid off his lungs.) We also talked about this follow up profusion scan. It was kind of implied that if he wasn't requiring the O2 at the time the 2nd one was scheduled that he may not have to have it. I told Dr Tong that while we don't really want to be going back and forth to STL every two weeks or so, I also don't want the docs to say "we think everything is fine" and then be on a life flight the next week because it wasn't. He agreed with me and said unless they can think of a really good reason not to do the scan, he will still have it done.

It's so great to have Damon back to his normal self. He is so good natured and happy all the time. I can't even imagine what his little mind thought of all he just went thru but he was so brave for all of it. Every time I look at that healing scar I am reminded of his problem and it almost brings tears to my eyes. And then I look at his face and he is smiling up at me and I forget all of it. That smile makes everything ok.

We met a man at RMH named John. John's 3 year old little boy has a big brain tumor. While we were there he had a G button placed (a sort of port for a feeding tube to be hooked up directly into his stomach) and then they were going to possibly start Chemo soon. They were even talking about him getting to go home for a while before that started. John talked to my mom this morning and his little boy Luke had to be put in the PICU yesterday and today he had to go on the ventilator. The docs don't really know what is wrong, but they don't think the tumor is causing this. Please, please pray for Luke and John. I can't even imagine what they are feeling right now. If something like that happened to Myles I don't think I could handle it.

There's another family that my mom met and we aren't sure what exactly is wrong with their little boy but he has one lung that was removed I think and the other one has collasped. He is on the ventilator and it is breathing for him completely. The docs told his parents today that they need to start thinking about turning off the machine. I don't know their names but God does so please pray for them.

We also met a little girl named Malory. She is 21 months old and has HLHS like Damon. She had her first two surgeries with no problems, then sometime after the 2nd one her tricuspid valve (the valve between the atria and the ventrical) started leaking. The blood is only supposed to go one way thru that valve and with HLHS sometimes there is a leak where some blood gets back thru into the atria. Well Malory's leak got so bad that the drs told her parents she would need a transplant. Praise God, yesterday, on her daddy's birthday, she got her new heart and she is doing well so far. Pray for her too, that she will not have any rejection. Pray for the family that lost their little one and made a decision to donate that heart so that Malory will have a second chance at life.

I guess you take the bad with the good. I know we all have so much to pray about but these people need your prayers desperately. If you can only pray "God please be with those children at SLCH" that would help, He knows each of them and their needs. Talk to you later.

Sarah

Held

A few days ago I told a story about a woman who had a miscarriage and when she went to the hospital she found out she had been carrying twins and the other one had survived. Gavin was born three months premature and had a rough time while he was here. He passed away on Sunday morning. I don't pretend to understand God and His ways. There is a phrase that I have heard many times in the past 9 months; "It's going to be ok." Well there is nothing ok about a baby dying. I just don't understand. I talked to Gavin's mom tonight and she said some things about his passing that really made an impression on me. I don't think I could be that positive or that graceful right after loosing a child. She even was asking about Damon and said she would be praying for him. There is a song called "Held" and the chorus says "This is what it means to be held, how it feels when the sacred is torn from your life and you survive. This is what it is to be loved and to know that the promise was when everything fell, we'd be held."

Damon is sleeping better now, but he still isn't eating all that great. Please pray for that. On Sunday night we ALL went to church for the first time. I was so nervous I felt like throwing up on the way there. I felt like I was breaking a big rule, or doing something really wrong. It was a really weird feeling. When we got there people were so glad to see us and they were all coming up to look at Damon. Everyone was really good about not touching him too much, which I was really grateful for. I was worried about having to say please don't touch him to everyone and offending someone. I'm still really paranoid about germs. Damon wasn't too happy about all the noise so we spent most of the sermon in the back where it was quiet and dark. But it was great to have our whole family in church and we look forward to the next time we can go. We have a dr's appt with Dr Wheeler the pediatrician tomorrow morning. Pray for him to have gained back any weight he lost from surgery and then some. Also pray for good sats! Talk to you all later.

Sarah

Saturday

We made it home yesterday at about 5:45pm. We were in the hospital for a total of 7 days and in STL for a total of 9 days, but it seemed like so much longer.

As Lacey said, Damon had to come home on oxygen again. The test that he had on Wednesday was called a profusion scan and it showed how much blood is going to each of his lungs. His left lung is getting less blood than his right due to a narrowing in his pulminary artery. Dr Gandhi put a patch over that spot to make it bigger, but sometimes there is swelling which causes the narrowing. This could go away on it's own, but they want us to come back up there to repeat the test on May 22nd. If the same results are found they have scheduled him an appointment in the cath lab to have another heart catheterization done. They would most likely do the balloon procedure on that narrow spot.

Damon is feeling pretty good. He is happy and smiling and content for most of the day. However, the past couple of nights have not been too good. He wakes up and I go in to try to put him back to sleep and he is unconsoleable for a while. Then when I put him back in bed, he screams. I think he is just afraid that someone is going to come in and mess with him like at the hospital. He also hasn't gotten his appetite back completely yet. He's eating his cereal fine for the most part but not doing as well with his bottles as we'd like. Please keep praying for him, and for us. We are so stressed out and exhausted. There is stuff we need to get done and it seems like we (me in particular) just can't get caught up. I'm a little down too because I really thought after this surgery he would be so much better and we wouldn't have to do anything else for a while and that didn't happen. It's just hard. Talk to you all later.

Sarah

Coming Home!

I just talked to Sarah and they are getting ready to leave Ronald McDonald House to come home. They will be stopping in Lebanon to pick-up Myles and then they will be on their way. Damon was actually released yesterday, but they didn't want to be driving late last night. Damon is coming home on oxygen, so be praying that he can come off of that quickly.
Thank You!
Lacey

Wednesday night update

Here I am the day after surgery, CRANKY! On the left, is me with my new friend Mikahla. She just got a new heart the other day and is doing great! Good news, my kidneys are fine, thank you very much!

Damon's sats haven't been staying up high enough without O2. He was off it for all last night and we thought we would be going home today, but they won't stay consistent enough so they put the O2 back on and Dr Gandhi said he couldn't go home. He sent him to have a test called a profusion scan, which is a fancy xray that shows the blood flow in his lungs. It came back showing that his right lung is getting more blood than his left. Dr Gandhi hasn't seen it yet so we don't know the plan as of now. I think he will send Damon home on O2 and have Dr Tong check him out frequently but he could want to do something else. We'll know more in the morning probably. I'll post sometime tomorrow and let you know. Otherwise, he is his regular happy self, surgery smurgery.

Sarah

4/18 Post

I talked to Sarah at about noon and they were going to get to go home today, but Damon keeps de-satting. His sat's should be in the mid 70's or higher and his are in the high 50's low 60's. Please pray that his sats go back up and stay consistent. He also had an ultrasound on his kidneys b/c they were slightly dilated when he was born and they just want to check them out to make sure they are okay. Sarah hadn't heard any results yet.
Thanks for your prayers!
Lacey for the Cochrans

Amazing

There is a little girl and her family staying at RMH w/ us. She had a heart transplant about two weeks ago and is doing well. Her mom told me this story night before last: There is a baby here that has been waiting on a new heart for about 3 months. The family staying at RMH met them and became friends while they were here for their daughter. The baby got the call that she had a heart coming on April 10th, her surgery would begin at 4:30pm that day. Around 10pm that night this family staying at RMH went up to check on the other baby and found out that the heart was in place but it wasn't beating on its own. Right away the dad grabbed the hands of the people and started praying. Then he called his grandma and she prayed over speaker phone. They went back up to their daughter's room and told their daughter to pray too. The mom said that the little girl asked God to put his hands on Dr Gandhi's hands and for Dr Gandhi to put his hands on this baby's heart and to make it ok. (This little girl is 9 yrs old.) About 10 minutes after this all happened the dad of the baby in surgery came up to their room and said that her heart had started beating on it's own right after they all prayed.

My mom met another family last night and heard this story from them: The mom was about 4 months pregnant and she was cramping really badly and miscarried her baby. She started feeling ok right after that so she didn't go to the hospital right away. Later, she had a burst ear drum so she went to the ER for that and while she was there she told them that she had miscarried and asked if they thought she might need a DNC (I think that's what it's called anyway.) They started checking her out and said to her, "Your baby is fine." She was carrying twins and the other baby survived! This baby boy was born 3 months early and is in the NICU here at SLCH and he has had a very rocky road so far, but he is still hanging on. The mom said that she just feels that God has brought him this far and she thinks he will make it. The doctors aren't giving them much hope, but she isn't going to give up on him.

I wish I had time to share all the stories I've heard while we've been here. God is at work all over this hospital. He is so amazing and faithful. He never promised us an easy road but He will walk with us down it all the way.

Damon has not been able to come off his O2 yet, his sats have been jumping all around. He looks fine when they go down, but the numbers have kept him on the oxygen. He is having his echo and ekg and chest xray today so please pray that all that turns out ok. He is also going to get a blood transfusion today, Dr Gandhi thinks that will help his sats. He is acting more like himself today, he smiled and was talking a little bit this morning, until the nurse came in and pulled his last chest tube. He didn't appreciate that really. Keep praying for him, he still needs it. Talk to you all later.

Sarah

We've made the move

to the floor! Damon moved over to our old friend 50B on 7w today around noon. 50B is the room we were in for 12 days back in March and 7W is the name of the progressive care unit where the kids go before they go home. So we are one step closer to coming home. I think it will still be a couple more days, but like I've said before, don't take everything I say on here as fact because it could change just like that.

Damon is still pretty cranky when he wakes up, still in pain and just uncomfortable all around. I did get to hold him today and he seemed to be comforted by that. He is doing well otherwise though. He still has one drainage tube in, the rest were taken out this morning, as well as his arterial line (iv in his wrist), the iv in his foot, the sub-clavian iv (iv by his collar bone) and his foley catheter (the tube that drains his pee). So the only thing he has left are the pacer wires, one iv in his hand, and his O2 which is in his nose, and that one last drainage tube. When he crys, his sats go down pretty low and that was concerning us at first but our nurse yesterday and today told us that his body is still adjusting to the new blood flow route after surgery and it will take a few days for everything to get back to normal again. His coloring looks better, I think and his feet were actually warm today, even with no socks on and that has never happened. I am praying that tonight he can have a good night's sleep (for both our sakes) and tomorrow he will be more himself.

We met another family today that had their HLHS baby on the 12th. His name is Blake and his Norwood is supposed to be on Tuesday. Pray for this family please, this is such a hard time for new parents. We'll talk to you later.

Sarah

The day after

Damon is doing fine, pretty much just like they expect him to be doing. After this surgery, the babies have horrible headaches and he is going thru that. He doesn't wake up very much, but when he does he is very unhappy. His voice is very hoarse from the vent tube being in, but it is great to hear that little cry. We haven't been staying in the room as much this time because he is so out of it and we don't want to disturb him and make him upset. He is able to eat today, but just a little bit at a time so he doesn't get sick. He still has all his iv's and tubes in. He's got 4 iv's, three drainage tubes, pacing wires and a Foley catheder in right now. The plan is to get him off the iv fluids and wean him off the two meds he's on right now and to start back up on one that he was on before surgery. His blood pressure has been kinda high because of the pain. He is on 1 liter of O2 right now, yesterday he was on 2 so he's progressing.

As much as I HATE to see him like this, I just keep thinking about how much better he is going to feel after this is over. We are so grateful to God for everything He is doing in Damon and our lives. He truly is amazing. This website was designed to keep all our family and friends informed about Damon, but I have additional intentions for it. I cannot fail to tell of God's amazing works. There is absolutely NO WAY that we could make it thru this without His peace and comfort. We met a family in the surgery waiting room yesterday and they were crying a lot. They overheard us talking about Damon and the grandma said to our preacher "my gosh, we are just dealing with a broken arm and are falling apart." I can't imagine the dispare that we would feel if we didn't have God with us all the time. If you don't know Him, get on board please! He will never leave you nor forsake you and He loves you so much more than you will ever realize.

We were blessed to have Hayden and his mom and dad, Jenny and Tyson with us for surgery yesterday. Hayden looks great, not at all like his surgery was on Monday. It made us feel good to see how well he was doing.

I'll update more soon. Talk to you later.

Sarah

4:30 update

Sarah just called. They got to go back and see him and he already has the ventilator out. He is cranky and so they are keeping him pretty sedated so he can rest. That all she has for now, I will post more tomorrow. Please keep sending up those prayers!

Lacey

12:00 update

I just talked to Sarah and Damon is out of surgery. Dr. Gahndi said everything went well, he had to put a patch on the pulmonary artery and that took the longest. He will probably be in the PICU for 3-4 days. Sarah said they would be able to see him in an hour or so and that they were going to try to get him off the breathing tube soon. The next few days will probably be the worst because this surgery tends to cause bad headaches from the change in blood flow.
Sarah will probably call me with more info. after they are able to see him.
Lacey

9:30 update

They have Damon opened up, he is on the bypass machine and they are starting the repair.
Lacey

Friday Morning Update

I just talked to Sarah at about 9:00. They took Damon back at 7:30 and they started surgery about 20 minutes ago. All she knows so far is that his vitals are all good. I will post more info. later.
Lacey

Update by Lacey

I talked to Sarah and Damon this evening. Damon squealed and spit, he was in a very good mood. Sarah said that his chest x-ray was good today and that they drew his blood the first try, yay! They are checked in at the Ronald McDonald house right now. They will have to be at the hospital by 6:00 am tomorrow and they will prob. take Damon back at 7:30 or sooner. Surgery will prob. start around 9:00 a.m.

Sarah wanted me to let you all know that baby Hayden was released today!
Continue to lift both of these babies up to the Lord in prayer. He is still in control and miracles are happening all around us.
Thank you,
Lacey for the Cochrans

On our way

We left CJ today about 2pm with about half the contents of our house packed in the car. I cannot believe how much stuff we feel we can't live without while we are up there. By the time we stopped at Children's Miracle Network, and got food and gas, it was about 3pm. If you don't know about CMN, they are an organization that gives assistance to families of children with medical problems. They help out with gas money, food money sometimes, and arranging and paying for places for us to stay while we are in St Louis. The lady that has helped us has been so great and we appreciate so much this organization and all the help they have given to us.

I can't believe that we are only one day away from surgery. I have been very weepy this week. Everytime I look at Damon I almost cry because I just can't bare the thought of him having to go thru surgery again.

I have been talking to Hayden's mom, Jenny and she says that this second surgery has been a lot easier, as far as recovery. They don't get stitches on the incision, just glue and there are a lot fewer wires and tubes than last time. Also, since they are used to eating from a bottle, it's easier for them to start eating again by bottle, avoiding the NG tube all together.
But there are things harder about this one too. The babies have bad headaches after this surgery for a couple of days. Also, now that they have been with mom and dad for four months and they get held whenever they need comforting, they don't understand why mom and dad aren't holding them and they are very cranky about it. That is the part I am dreading the most. But hopefully it will only be for a very brief period of time.

Hayden has already moved to a room on the floor so he is doing very well, they even are talking about him going home by the weekend. Tomorrow we have to be at the hospital at 10am and the pre-op tests are supposed to take around 2 hours or so. We don't know what time we will have to be at the hospital on Friday morning, but if he is first case, it will probably be early. This will most likely be our last post until after surgery. Lacey will make updates during surgery and after surgery on Friday.

Please pray hard for Damon these next two days. I feel that this surgery will be successful, but that doesn't mean that we can stop praying. Talk to you all soon.

Sarah

Good Report

Damon had a check-up with his cardiologist today in Springfield and everything turned out good. There are no issues that Dr. Tong thought that needed addressed. Damon weighs 12lbs 1oz. He looks really healthy other than the scar on his chest. He has been able to rest a lot at home and I think that will help him in his recovery from his second surgery.
We had metioned yesterday about baby Hayden having his second surgery today. Sarah got a call from his mom this morning and surgery went very well and he is already off of the ventilator. That is great news because we were told that Damon should be off of the vent a couple days after surgery and Hayden is already off of it. Great news. We will talk to you soon.

Surgery

I am going to try to explain what is going to go on during surgery as best I can. If you have questions, please put them in the comments and I will try to answer them. (To make a comment, click on the word "comments" at the end of the blog. You don't have to sign up for a blog account to comment, just do it under annonymous and be sure to put your name.)

In the last surgery Dr Gandhi put a shunt in Damon's heart that connected his ventrical to his pulminary artery. The ventrical pumps the blood out to the aorta after it has received oxygen. The pulminary artery sends the blood to the lungs to get oxygen. He also reconstructed Damon's tiny aorta with a piece of tissue to make it a normal size. The aorta is the artery that sends the oxygen rich blood out to the body.
In this surgery, Dr G will cut the shunt and stitch up the ends so that no more blood can go thru it. There is a major artery called the Superior Vena Cava that bring all the blood from the top part of your body to the heart to get more oxygen. This artery will be disconnected from the heart and sewn into the pulminary artery so that instead of going into the heart first, it will go directly into Damon's lungs and then into the heart. Right now, Damon's heart is pumping all of his blood twice. The purpose of this 2nd surgery is to take about 1/2 the work load off of his heart. The 3rd surgery will take the other 1/2 off. Dr Gandhi also said that there is a place on his pulminary artery that has narrowed a little bit and he may have to put a patch on that part to open it back up.

At first to me it didn't seem like he would be doing all that much, but when you think about it most of the time he's in there will be opening him up, getting him on bypass, cleaning up scar tissue (there will be a lot) and then getting him off bypass. They will go in thru the scar he already has, so he won't have any new scars.

That's about all I can think of, but please if you have any questions put them in the comments and I will do my best to answer.

Hayden Adams is having his surgery early Monday morning. Please say a prayer for him and his mom and dad. This is such a scary thing. Thanks for all your prayers for us. Talk to you later.

Sarah

Packing......Again

Well it is almost time to start packing again. We leave for STL Wednesday afternoon. The second surgery is here and it is so scary to have to goes through it all again. I look at pictures from his first surgery and it makes me sick to my stomach. I know that what he is going through is going to help him, but it sure doesn't make it any easier to see him like that. We have gotten so much support from everyone, it has been so overwhelming. Not only from friends, family and co-workers, but from total strangers. We know that the God's prayer lines are crammed full of requests for Damon and his heart. That has been the most rewarding and humbling thing, is for people don't even know you or your son say that they will be praying for you. The thing that we are looking most forward to after this surgery is to let people see him. I know a lot of people are eager to see him and we are happy to show off our little miracle.
In this Easter season we need to give God the glory for what he has done in our lives and in the lives of our kids. Before Damon was born, I used to take small things for granted, like healthy kids. I know that is a small thing, but now with Damon it is such a big thing. Please thank God everyday for things he has allowed us to have. We can see through Damon's life he is still performing miracles even today. Please continue to pray for us to exercise our faith and to keep Damon healthy between now and Friday.
Please also lift up the Tyson and Jenny Adams family. Sarah has mentioned them before on here, but they have a little baby boy, Hayden. who was born three weeks after Damon and also has HLHS. Hayden's second surgery was scheduled for April 19th, but when they went up for his heart cath, they decided to do his surgery on Monday. It has been a rough week for this family and for ours knowing that in a few days we will be right there with them. Please lift them up in your prayers and remember baby Hayden.

Home Again

But only for another week. We got home last night around 8:30. Damon did come home with an oxygen tank but he doesn't need it all the time. I am going to put him on it at night so that I can sleep with out worrying. He is doing ok, but he is kinda going back to the way he was acting before the two caths, getting sleepy when he's eating and not eating as much. I know that our drs made the right choice about doing the surgery this soon, he needs it. We will be heading back up to STL next Wednesday afternoon sometime. We have to check in with the Heart Station on the 12th at 10am so we don't want to have to get up at 4am to drive up that day.

I have specific info about surgery now so I will post that soon, but Damon is on my lap and he's wiggly so I gotta go. Talk to you later.

Sarah

Monday morning

The docs came in and said that they want to keep him probably until tomorrow so they can observe him some more. His cough has gotten a little worse I think, it sounds wetter, like its breaking up so I don't know if that's good or bad. He will be getting a chest xray sometime today so they can check his lungs.

He was started on antibiotics, but not for his virus. While he was in Joplin at Freeman, they did a blood culture and it grew something so they thought he might have an infection in his blood but they did another one here and it showed he did not. But they did the antibiotics anyway just as a precaution. Jeremy does a great job of explaining everything, but sometimes info gets jumbled when the docs tell me then I try to repeat it to him.

He was taken off O2 last night around 11:30 but just a few minutes ago he was sleeping and his sats were getting low so they put it back on. I have a feeling that we might go home on oxygen this time. I don't like it, but will figure out how to deal with it, just like everything else.

Myles is here with us and he is having fun exploring all there is to see at the hospital. We went to the zoo yesterday for a few hours. It's really close to the hospital and free, so that's a blessing. He raises our spirits and I'm really glad he's here with us.

Please keep praying for Damon. Pray for his cough to get better and his sats to stabalize where they want them to be. And also for his up coming surgery, it is only about 10 days away. Talk to you all later.

Sarah

A Few More Days

Well, yesterday when I talked to Sarah she said that the plan was to come home today if Damon had a good night. He did not. He now has a wet cough and they wanna keep an eye on it to make sure it doesn't get down in his lungs. Damon has ate a lot better, but has gotten diareha. Sarah seems to think it is due to the difference in the hospital's formula and the one that Damon usually eats. All these problems are manageable and nothing too serious.
For allof you prayer warriors out there, please continue to pray for Damon's virus and his cough. Pray that he will make a speedy recovery and have a healthy stay at home. A week from this Friday is when we go back up to STL for his second surgery. Although Damon is in good hands, we would much rather have him home. It is much cheaper than an extended hospital stay.