So Far, So Good

I talked to Sarah not too long ago and she said that Damon was doing a lot better today than yesterday. He was smiling practically all day long. The doctors did start him on antibiotics for his virus and said that as soon as he is off of the oxygen he can come home. Hopefully that will be tomorrow. Other than that all is good with Damon. Thanks again for all of the prayers and support.

Back in STL

Well after a really long night, mommy and Damon are back in STL. They have been running tests on him all day and still no word on what the problem is. After talking to Sarah this morning she seems to think that is may just be a virus. That is what we are hoping for.
So Damon has had a long day of blood drawing, an EKG, and an echo. I am sure he is tired of getting picked on. Hopefully they will be home soon, but I will be sure to give the most up to date information that I have. Please continue to pray for our family, as we need it desperately right now.

He's Got the Fever

Just wanted to let everyone know that Damon is having a rough day. Since 2:00 pm today Damon has been running a fever. We think it is because he is teething, but we are not certain. Once he started having a fever his hands and feet starting turning a little dusky. It just seems we can't catch a break right now. We ask that you just pray that Damon has a good night and that his fever will break. If for some reason it doesn't we will have to go to the hospital here in Joplin. We are believing that everything is going to be ok though.
Please lift us up in your prayers as we have been under a lot of stress these last couple of weeks. It has been really difficult not worrying about Damon. We were hoping to have 2-3 weeks where we could get back to somewhat of a normal routine, but so far it hasn't really worked out that way. To God be the glory though, for getting us this far. We know that he will continue to walk us hand in hands through this whole process called life.

Dr Visit

We went to see Dr Tong this afternoon. Damon's echo showed that his heart function was still good and his aorta and shunt were still open after the balloon and stent procedures. Dr Tong said we didn't have to see him again until after surgery. I was a little nervous about talking w/ him today because Damon saw Dr Tong the Friday before we ended up in STL and we couldn't understand how they didn't see anything then. When we spoke with him about it he said he didn't really have an explaination about why nothing was seen and he was going to look at the echo from that day again so that he could convince himself that he hadn't seen anything that day that would've caused him to be concerned. We will probably never know for sure if a mistake was made or not, but we both feel confident that now that Damon has had a problem, Dr Tong will be watching him a lot more closely.

Damon was not happy when they started trying to get his blood pressure. He started screaming, like he was so mad about it. I felt so bad for him because he probably thought that he was having to go thru it all again. I wish I could make him understand that it's all to make him better.

He weighed 11 lbs 11 oz and was 23 1/2 in long today, so he is growing bigger and bigger. Surgery is getting closer and I still can't really believe that it's time for it already. Everytime I think about it I get a sick feeling in my stomach. Everything in my being is against seeing my baby layed out on the bed with all the tubes and wires and big white bandage. I know God will be with him but it's so hard to think about someone so small and innocent having to go thru so much. I know I've said this before but I can't understand why my child was chosen to go thru this. My mother's heart wanted a different story to tell.

Talk to you later.

Sarah

Adjusting

All of us had some adjusting to do in the last few weeks. Myles and I had to adjust to life without mom and brother for awhile. Sarah and Damon had to adjust to life in the hospital. Now we are all just adjusting to some sort of normal home life. Damon seems so happy to be home. He smiles and talks from the time I get home from work until the time I go to bed. All of us are glad that he is doing better. It is really hard to know that in a few weeks he will be in STL having his second surgery, even though it is for the betterment of his health it doesn't make it any easier.
We wouldn't have made it this far without the love of God and the support of our family & friends. It has been overwhelming to see what you all have done for us. Whether it be prayers, dinners, money or just a tender word. It is the little things that make the difference and words cannot describe the amount of gratitude that our family feels towards every person that has made a contribution. Please continue to pray for Damon and our family that in the coming weeks we will just love each other and be there for each other. It is not going to be an easy time in our lives, but we will get through it by the grace of God.

Home at last

We were released from the hospital yesterday morning and by the time we got all our paperwork and meds and everything in the car it was about 11:15 before we finally got on the road. We got to Joplin around 4:15 and went to pick up Myles from my friend Lacey's house. She said he had been looking out the door for the last hour and when he saw me he didn't smile or act excited, he looked concerned. I picked him up and was trying to kiss and hug him and all he kept saying was "Where's Damon, where's Damon?" He looked really worried until he saw him. They were so happy to see each other, Damon started smiling at Myles right away. It was so great to have them back together. The rest of the night was not quite so precious. Myles was "acting a fool" as my friend Dre would say. He was not being very nice and it was very frustrating. I was glad to be home though, even if the "I'm so glad to see you" only lasted for five minutes.

We want to say thank you to the following people:
Papa and Candy Grandma (My dad and stepmom); Pa Baert; Granny & Pa Cochran (Jeremy's parents);
Hank (my brother); Lacey and Michael Baker & Alivia & baby girl Baker; Nanny Brooks; Richard Morris;
Darrel Oakes; JC Penney Staff; & all of our prayer Warriors. These people helped us with watching Myles, financial support, taxi service, and many other things. We are grateful for all of you and wish there was some way we could truely express how thankful we are. I would also like to thank my mom. She was able to come up with Jeremy and she stayed with me the whole time we were in the hospital. It would have been a very lonely and depressing time for me if I had been there by myself. Thanks mom, we love you. Jeremy's mom and dad also took off work for a couple of days to come and stay at our house so that Myles would be in his own home. That was very important to Jeremy and I, that he be able to have some normalcy. So thank you also and we love you too.

Damon's second surgery has been scheduled for April 13th. He has to report to the Heart Station at SLCH at 10am on the 12th for all his pre-op testing and then his surgery will probably be first case the next morning. This is a little sooner than we had all expected but Dr Gandhi has made up his mind and so we trust him.

We have lots of pictures of Damon with his nurses and drs that we'll try to get uploaded soon. They are all such great people. We'll update again soon. Talk to you all later.

Sarah

Overdue Homecoming??

The word this morning was that Damon was still without oxygen and his sats were staying right where the doctors wanted them. Sarah said that if this continues that they will get released in the morning to come home. It has been really hard for our family to be seperated from each other. I know it was what was best for Damon's health but these last couple of weeks have really been stressful.
I got a chance to talk with Damon on the phone a few minutes ago and Sarah said he was smiling so much when I was talking to him. That make a daddy feel good. Anyway, we will keep you posted with all of the latest details on when they will get to come home. Myles wants to have a party when they come home and I think that is a great idea. Talk to you all later. Remember to keep us in your prayers.

Sunday Update

Damon had a good night, he stayed off the O2 and didn't have any de-sating episodes. The docs came in this morning and said he will probably be going home tomorrow. He won't need an echo before he leaves. Now I know I have put this news on here twice, that we are probably going home tomorrow. So just because I have typed this doesn't mean that something couldn't happen between now and then that will change it. But I really feel like this time it's going to happen. Damon's heart function is a lot better since that second cath and this is the longest he has been without the O2 with no de-sating. I know God is faithful and I just feel in my heart that we will be going home tomorrow.

I am hoping that Dr Gandhi will be stopping by either today or tomorrow morning so I can ask him a few questions I have about the Glenn surgery. The docs are still saying a few weeks (I have still not figured out how many weeks that is exactly) until they do the Glenn. I think they would like to wait as long as possible though. To give his heart the full time to recover from this little "bump" we had. Lord if this has been a bump I hope and pray never to see what a hill would be like.

All the doctors and nurses in this place are so great. It seems that Damon is a favorite around here. None of them can get over how he always sleeps with his hands on his ears. He really likes them all, he smiles and wiggles when ever they come in to check on him. We have been trying to get pictures with as many of them as we can so we will always remember the special people who took care of him. I'm wondering what he is going to think when we finally do get home and it's only me and Jeremy taking care of him.

Myles is very excited for us to come home. He keeps telling me that he wants to come up here and see Damon. I know it will be a precious reunion when they finally see each other again. We have some pictures taped to the end of Damon's bed of Myles and Jeremy and Damon likes to look at them.

That's all for now, hopefully the next post will be coming from my home computer!!! Talk to you all later.

Sarah

Update 3.17.07

Damon had another heart cath on Thursday evening. It went well, although he had to be put on a ventilator. That is the standard procedure for when they are putting in a stent they said. They wanted to keep him in the PICU to watch him over night and when we got back there to see him it was about 9:30pm and he was starting to wake up. He was gagging on the vent tube and was breathing mostly on his own anyway so they went ahead and took it out. They hadn't planned on taking it out until morning so we were so happy they did it early. I was really worried when they told me they were putting it in.

They put two stents in his shunt and also re-did the balloon one mm bigger than they had the first time. He had a much better recovery with this second one, I thought. He stayed in the PICU most of the next day (Friday) because they were watching his heart rate. It would go down really low when he was sleeping but it always came back up on it's own.

He moved back to his room yesterday at 3pm and this morning they took the oxygen out. Pray that he can stay off of it so we can get home asap. Dr Gandhi told us that his heart function looked much better on yesterday's echo after the second cath. Gotta go, the computer lab is closing. Talk to you later

Sarah

New Plan

I guess both of my posts uploaded yesterday so you got the short and long versions.

Here is the latest news. Dr Gandhi came in last night and said we have 3 options: 1) go home on oxygen and do nothing until the Glenn surgery 2) do the surgery now 3) do another cath and put a stint in the shunt because it has a little narrowing also. He said if it was his child he would do option #3. He said with his heart function being so poor right now he thinks Damon would have a hard recovery and be here longer than necessary if we went forward w/ the surgery now and doing another cath would probably buy us the time we need to get his heart working better before the Glenn.

We decided that we would go that route so Damon is having another heart cath this afternoon/evening. In the one they did last Friday they went into his aorta and ballooned it open where it had narrowed allowing the blood flow to the body to be better. This time they are going to go into the shunt and put in a stint to open it up which will allow more blood to go into his lungs to get oxygen, which should make his sats go up and make his overall heart function better.

He is on three new meds since we've been here, all to help his heart function, but the docs are saying that sometimes they can take a few weeks to start working. God willing, after this second cath and with all these new meds his heart will be doing a lot better very soon. There is still a possibility that he will have to come home on oxygen, but that ok.

Please pray that he will not get any blood clots in his artery and that the cath goes ok. Pray for Jeremy while he travels up here today.

We don't know when we will be coming home. We really want to soon, but we need to make sure it's ok for our little fighter. He is so sweet, he still smiles at us and talks. He likes his nurses and yesterday when Dr Gandhi was in there he was on my lap and he was looking at Dr Gandhi like he was listening really intently to what he was saying. He has lots of little battle scars right now from all the pokes he's gotten and from where tape has been taken off but he's hanging in there.

I talked to a lady this morning who's daughter had a bone marrow transplant. They have been here since January 4th.

God please place your healing hands on every child in this hospital. They are all precious in your eyes and need your presence with them all the time. Give them courage when they are scared and hope where there seems to be none. Strengthen their parents to be able to keep smiling when all they want to do is cry. Amen

Sarah

Update

I just typed this long post about what is going on and I lost the whole thing. So now you just get the short version.

Damon had to go back on oxygen this morning so we wont be going home today. They are going to observe him the rest of the day and slowly wean him back off. The docs think it might be the new medicine he's started so they aren't going to plan on doing another cath or anything like that yet. We're still now sure when we are going to come home. We really want to but we also want to make sure he's 100% ready before we leave.

Please keep praying for Damon and also for Jeremy and Myles. Jeremy's work schedule is crazy so Myles can't stay at home and he's being passed around. They both want to be up here and it's really hard on all of us, I miss them so much. I'll update when I know more. Talk to you all later.

Sarah

Update

As I mentioned yesterday, Damon was taken off oxygen around 1:30pm and stayed off of it all day and night without any problems. This morning about 11:45am my mom had just finished feeding him and he slept in her arms for a while then as she was putting him in bed he started to de-sat. His sats were reading very low on the monitor, in the 40's and 30's. The nurses and drs who were in the room didn't believe it was that low because he looked fine and was breathing fine. They changed the probe, moved it around to different feet, toes, fingers, hands but it never came up so they had to put him back on oxygen.

He had an echo and ekg this morning and the echo didn't show any change from what it showed on Saturday. They said that it could take up to a few weeks for his heart function to return to what's normal for him so they didn't seem overly concerned that there was no change yet. The plan for today is to just let him be on the oxygen for a few hours and slowly start to wean him off it later this afternoon and this evening. They aren't going to do anything as far as another cath or anything like that, just observe him closely. The dr we talked to after that happened said that the best way to tell how he is doing is to just watch him. Make sure he keeps eating well, keeps having plenty of wet diapers, and watch his breathing to make sure it isn't labored or really fast.

She also told us that this new medicine that he is on makes it really easy for the blood to get out to his body. This is kind of confusing to explain, but basically the side that takes the blood out to the body is the side with the aorta and they are making it really easy for that side to work since it had that narrowed spot. However the side that sends the blood to the lungs, where the shunt is, isn't really getting any help. It's still working fine but sometimes this can cause the babies to look a little bluer and have a lower sat level. We were told that after the Glenn surgery this will all change but for now his body just might have a lower sat average than it did when we came here on Thursday because of the new meds. So they are just watching him closely today and we will not be going home today.

Please keep prayers going for Damon. This time from now until his next surgery is very scary with so many different things that could change. We really want to go home but we also want to make 100% sure it's time for that before we leave. Pray for Myles and Jeremy too, they both hate it that they can't be here with us and poor Myles is being passed around because of Jeremy's work schedule. We appreciate everyone helping us out with Myles so much. I'll update when I know more. Talk to you later.

Sarah

Sunday & Monday

Sorry I didn't post yesterday. This STL visit is different from last time. Damon is older and he is used to me being around when he needs me so I haven't been getting very far away from his side. We also wait a lot on dr's who are supposed to be coming in any minute and then in turns into several minutes.

Sunday and Monday there wasn't a whole lot going on. Damon didn't have any echo's or any other tests. He was just getting his O2 turned down more and more. On Monday though, they had a hard time finding his pulse in his right foot again so they did an ultrasound on his leg where they went in for the cath to make sure there weren't any big clots that formed. They didn't find one. He was down to .1 liters of O2 last night when we went to sleep and when I woke up this morning to feed him it was turned off.

However, after I fed him and got him back in bed his sats (level of oxygen in his blood) were low and they weren't coming back up on their own. I called the nurse in and she and I both weren't convinced that the numbers were right because she said if his sats were really that low he would be laboring to breath and his color wouldn't look as good and he seemed fine. Anyway, she put on a new pulse ox monitor and moved it to his hand and turned the O2 back on to .4 liters this morning.

We are weaning from oxygen again today and that's about it. They started him on Analapril (sp??) and Dogoxin (sp??) which are both meds to help his heart function. They are uping the dose of Analapril today up to what it will be all the time. He will have another echo tomorrow to check on his heart function and also to look at the spot on his aorta where it narrowed before. Dr Gandhi said that if need be, he might have to have another heart cath while we are here to stretch the aorta more. He hopes to be able to send us home without oxygen, but it's a possibility that he might have to have some when we leave. He said that there is an outside chance that he might want to go ahead w/ the surgery, but that's not the ideal so I think they will try everything else first so we can wait a little while longer.

He got his iv out today because it was practically out already and his vein stopped taking in the fluids anyway. We asked if we could go up to the garden and walk around and our nurse said she thought he would be ok with out his O2 while we were up there so he got to take that out. Right now he isn't on any so we are praying that he can do well enough to keep it off. The cardiac resident told me this morning to probably plan on being here for a few more days.

Jeremy went home on Sunday and my mom stayed up here with me. Myles is going here and there staying with different people. We are trying to keep him busy so that he doesn't think about not being able to be at home with us. He wants to be up here so bad.

Please pray that Damon will do fine without the oxygen, pray that his heart function has improved since the cath, pray that the aorta hasn't re-narrowed, pray that we will be able to come home soon.

It's very hard for me not to sit in that room and look at Damon and think about how bad he has it and feel sorry for him and myself. But this morning I was coming back from getting coffee and I saw a lady who takes care of parents in the PICU Parents lounge taking a family down to leave and they had all their stuff, but not their child. So we have so much to be thankful for and grateful for and God is with Damon all the time. Thank you for all your prayers so far and I'll update as I know more. Talk to you all later.

Sarah

Saturday Update

I just talked to Sarah this evening and she doesn't have a way to post info. right now so this is what is going on.
The heart catheter went well and the balloon was successful. They found out this morning and the echo confirmed that his heart was not functioning as well as it should so they are starting a medicine that should help increase heart function.
Dr. Gandhi is talking with the cardiologists to decide when the next surgery will be, right now they are saying anywhere from 2-4 weeks, but this could change based on his heart function.
Unless something unexpected happens, he should improve after they start his medicine.
Sarah will post more info. on Monday when she has internet access. The phone number directly to Damon's room is 314-454-2991.
Continue to lift Damon and the family up in prayer.
Thank you,
Lacey for the Cochrans

Update

Well we are in STL again. This is not at all how I pictured our next trip up here. But as we have learned very well in the past six months or so, what we want, or think will happen doesn't always happen. The will of God is bigger than we can imagine.

The short version of why we are here is that when the nurse came yesterday Damon was having trouble breathing and she said he was retracting a little bit. We were planning on going to Dr Grote's this morning but around 1:30pm yesterday when I was feeding him he was breathing so fast and his face was really blue looking so we ended up taking Damon in yesterday instead. Dr Grote checked him out in the office and then called Dr Tong and they both thought it would be best to get a chest xray. Dr Grote said he was concerned about his respiratory rate and his color so Dr Tong said if the xray didn't show anything then we needed to get to STL in case it was something surgical.

We had to wait for the medflight in the ER at Freeman. It was a long wait. The team from STL came in a small jet and landed at the airport and came to Freeman in an ambulance. They came and got us and we rode back to the airport then got on the plane and were in STL in about an hour. I was allowed to ride on the plane with Damon, for which I am so grateful. I couldn't bare the thought of him getting there and looking for me and wondering where Mommy is. Jeremy and my mom drove up after the plane took off and Jeremy's parents Barbara and Greg drove up as well.

They did an Echo on him last night and said they didn't have any concrete reason yet for what was wrong so they just let him go to bed and monitored his sats. This morning he had another Echo and another chest xray. One of the cardiologists came and told us that his aorta has narrowed and that was causing the problems. They decided to go ahead and do the heart catheterization now since we were already here and while they were in there they would do a balloon to open up his aorta.

That's where he is right now, and we won't get an update until 2pm. He will have to stay overnight but most likely we will be able to come home sometime tomorrow. Thank you for all your prayers, but keep them up because he still needs them and He is still in control.

We will let you know as soon as we have more news. Talk to you later.

Sarah

Update by Lacey for the Cochrans

They took Damon to Dr. Grotes today, he ordered a chest X-ray to see if there was pneumonia, they didn't find anything so they felt it would be best for Damon to go to St. Louis and be near a surgeon. They are presently waiting for the medflight plane to take them, Sarah said that at least one of them should be able to ride with him, but if not they will be driving.
She will call tomorrow so that I can give you all an update.
Please pray for Damon to get better quick!
Lacey

Prayer Needed

Things can change so quickly. Please start praying for Damon. The nurse came today and said that she noticed that he was having trouble breathing. She also looked at his chest and said that he was retracting a little bit. His sats were also lower than normal. I mentioned to her that this past week he has been falling asleep while he's eating and hasn't been finishing all of his bottles. She said it could be because he isn't getting enough oxygen so it's making him tired. She mentioned also that if this continues then he might have to go on oxygen. She called and let Dr Grote know all these things and his office called and they want to see him tomorrow morning. I also spoke with Dr Tong, his cardio dr and he told me he thinks that he might be coming down with a cold or upper respriratory infection. He wants Dr Grote to call him after he sees Damon and if Grote doesn't find anything, Dr Tong wants to see him next week.

This has gotten me so scared, and guilty because he was doing the same breathing thing the other day and I didn't think very much of it. I feel so inadequate to take care of him. It's kind of like going to work at a new job as a chemical engineer, or a nuclear scientist or something after you've only had about a week of training for it.

Please say a prayer for Damon that he will be ok. Will let you all know something as soon as I know something.

Sarah

Good thing...

Since I quit my job and Jeremy's insurance doesn't start until April 1, the only thing Damon has right now is Medicaid. Dr Grote's office doesn't cover immunizations when you only have Medicaid so we have to go to the County Health Dept. I called them on Friday and the lady suggested that I call the dr's office and ask if they could make an acception since Damon has special circumstances. She said there are a lot of children in their office on the days they do the immunizations and we are trying to avoid that as much as possible. So I called Dr Grote and asked if there was anything they could do and of course, no, there isn't. It's against the law or something the nurse told me. I decided that we would just wait until our ins kicks in on April 1st and get his shots then. She also told me that I need to check w/ the ins company and find out if they cover well baby/ immunizations visits. So I call the HR person at Jeremy's work and ask her and she says yes they do if it's an in-network physician.

Ask me if Dr Grote is an in-network physician. He isn't. So now we have to find a new pediatrician for Damon and Myles. The new insurance only provides in-network if it's thru a St John's doctor and we have all Freeman doctors. I found out thru making some phone calls that there is only one who accepts our ins and Medicaid that is taking new patients and she is a Nurse Practitioner. So I am going to call her right now and see what we can do. I absolutely HATE doing this kind of stuff, but the good thing is that we found out about it before April 1st so that we didn't go to Dr Grote after that and get stuck with an out of network bill.

Please pray with me that St Louis Children's Hospital and Washington University Physicians and Dr Tong the cardiologist all take our new kind of insurance. We will still go to STL even if they don't, but Dr Tong is another issue and we really like him and I don't want to have to find a new cardiologist right before his second surgery. This is so stressful!

By the way, I forgot to mention that after the nurse's visit on Thursday Damon weighed 10lbs 15oz and was 22 1/2 in long. (Our home nurse doesn't know how to measure correctly and I knew he was longer than that.) And then on Friday at Dr Tong's he was 11lbs and 24 in long! He is getting so big, his 0-3 clothes aren't fitting anymore! Pray for him to keep up his strength while he is eating, he has been falling asleep while eating lately and not finishing his bottles. Talk to you all later.

Sarah

Dr visit

We went to see Dr Tong today. Damon's sats were in the mid 70's and his EKG and Echo both looked good. Dr Tong said that he would probably see Damon two more times before his heart cath, so since his appts are one month apart that would mean May. Well if you remember, I think I put on here before that Dr Tong had said April for the cath and May or June for the surgery. I asked him why the difference now and he said that it all depends on when the respiratory virus season is over. Basically when the danger of Damon getting RSV is the least. He said the main thing about scheduling surgery is to avoid winter and the cold/flu season. He said he would be willing to send Damon's info to STL after his April appt and if they say the risk is low then they might be able to go ahead and schedule it then.

I have always been very trusting of what all these dr's and nurses tell me. Meaning that if you tell me something is going to happen in April then I'm going to believe you and tell every one I know that it's going to be April. But Dr Tong said today that there is no kind of schedule with this process. It all depends on Damon and how he is doing.

So please, if I mention a month or time frame for something, take it with a grain of salt because I could be posting something different the next day. This is very frustrating for me as well.

Something else that I want to say that maybe not everyone realizes. Damon is doing wonderfully right now (Praise be to our God!); so wonderfully that some people are wondering why he has to have another surgery. The first surgery corrected his heart so that he could grow big enough for the second phase. He would not survive if he only had one of the three surgeries. The reason he has to have three is because so much repair has to be done that they could not do it all at one time. The three surgeries work together over time to correct the heart completely. He will not have a normal heart after the third surgery, but by the miracle of modern medicine and to the glory of God his heart will support him after it. We praise God that Damon is doing so well right now. It is truly a miracle that he is. But he still has a long uphill road ahead of him and he needs your prayers everyday.

We love you all and thank you for those prayers. Talk to you all later.

Sarah