Update

I posted not too long ago that Jeremy had some test last week that we were hoping to hear about this week. Yesterday he got the news that his blood tests are fine, but the ct scan showed that he has a blockage of some kind in his right sinus cavity. They scheduled him an appt w/ an ear/nose/throat dr for July 10th but had him on a waiting list for a sooner appt if one came up. Jeremy got in early at the e/n/t dr today and she didn't give him much to go on. She said that the blockage is not the source of his pain. They also told him that the inside of his nose is crooked and that can cause you to have trouble breathing on one side or frequent sinus infections. He doesn't have either of those problems so she is sending him back to the regular dr. She suggested that he ask them to check out his thyroid. So please pray that God will give the dr wisdom to figure out the problem.

I took all of Damon's home oxygen supplies back today. I'm so grateful that he doesn't need that anymore, it was no fun at all. He is feeling better from his cold. He still has a cough but it's getting better everyday. Right now he is laying in his swing playing with his feet and talking away. Myles is making him laugh too.

Damon's dr appt on Tuesday went well. His sats were fine and Dr Tong said that his echo looked good too. He doesn't have to go back for a month. We ended up spending the day in Springfield waiting on his script to be filled but it wasn't too bad, we just walked around the mall. Talk to you later.

Sarah

Weekend

We had a good one. Damon met some of my dad's side of the family that had never seen him yet. He was in a pretty good mood all weekend too. He has gotten a little virus or cold or something though. Or I guess I should say, he has had it but we are just now noticing the symptoms. Perhaps the fever was due to that, I don't know. But he is sneezing a lot and his little nose is running sometimes and he has a cough that is bothering him and kept us both up last night.

We are going to Springfield this morning for a visist with Dr Tong so hopefully he will give us some advice about what to do about it. Pray for us to get there safely cause I'm tired! Also please pray for Jeremy today. He has been having back and neck pain and headaches and he had some tests run last week and we think they will be back today, at least we're hoping. Talk to you all later.

Sarah

Home

We got home today around 5:45. We did have to go back into the hospital last night because Damon was breathing irregularly and he had a fever, which after a cath could be a sign of infection. They did blood test and kept him overnight to observe him. His initial blood test came back fine so it's probably not an infection. They said if his blood culture comes back with growth then they would call us and prescribe some antibiotics. Right now he still has a little bit of a fever so we gave him some Tylenol, but it might be from teething. As soon as we got hom and got settled down his mood changed. He is so happy to be home. I really hadn't seen him smile at all or act like himself until we got here.

This week was really a lot more exhausting for some reason than the other times we've been there. It's good to be back. I just pray that we won't have anymore trips to STL for a long time. There are still so many kids up there that need prayers. Too many to name them all, but a few you can pray for are Liam, Luke, and Byler.
There is one little girl that was our roomate on our trip to STL at the beginning of March. She has a similar defect to what Damon has and would be having the same second and third surgeries as Damon. I thought she was going to be up there recovering from her 2nd surgery while we are up there. I saw her and here mom on the day of Damon's perfusion scan. They were there for a follow up appt because she had received a new heart! She came up in April for her cath and her heart was no good. But she only had to wait 11 days for her new heart and she is doing great. It's amazing how God works.

Talk to you all later. Sarah

Friday Morning

Sarah called and Damon had to go back to the hospital last night. His fever was at 101.7. They stayed the night and kept an eye on him. They were taking him off the monitors and discharging them this morning. His sat's have been staying up in the low 80's and he hasn't had to be on oxygen the whole time, so that is a praise.
Keep praying for healing and for a safe trip home today.
Lacey

Thursday

We were released from the hospital at around 2:00pm today. Damon had an EKG, an echo, a chest xray and another perfusion scan. I could see on the monitor that this second scan looked better since after they did the balloon on his pulminary artery. Then the dr wanted another chest xray w/ a different view because his right lung looked a little hazy, meaning there is a little congestion around it. But they didn't think it was anything to be worried about. He also had a low grade fever when we left, 99.9 but they don't consider it an actual fever unless it's 100.4 so they didn't say anything about that either.

We decided to stay the night at RMH and leave in the morning because we didn't want to be driving home in a storm or the dark. Around 4pm or so I noticed Damon breathing a little fast. I had taken his temp again since we left the hospital and it was still the same but I continued to watch his breathing and make sure he isn't retracting. I called his cardio dr to see what he thought and he said it is probably just his body adjusting to the new blood flow pattern but to keep watching him and if it continued to call the hospital. Around 4:45 I took his temp again and it was higher. I'm not sure what it actually was at that time because the little temp sticks they gave me are in celcius but she said if it got up to 38 then he has a fever and it was 38.5. So I called the hospital and asked for the cardio fellow on call and I'm still waiting on him to call back right now. I took his temp again at 5:15 and it was back down to 99.9 but I'm still worried about him so please pray that it will be nothing and he will come out of it. We plan to come home in the morning but if something changes I'll try to post it. Talk to you later.

Sarah

3:15 Update

The catheter is finished and they had to do the balloon on the pulmonary artery as well as the aorta. The aorta had been done before. Sarah is going to stay with him because he has to lay flat for 4 hours. That is all for now.
Lacey

Update

I just talked to Sarah (11:45 a.m.) Damon is in the cath. lab right now. His profusion scan showed 87% of his blood is going to the right lung and only 13% to the left. It should be 50/50. They are seeing what the problem is right now and then they will decide what to do. Sarah said they may have to do a balloon.
Please keep praying!
Lacey for the Cochrans

Room

About 3:30pm yesterday the RMH called and said they had a room for us, but it was at the other RMH in STL. This one is further away from the hospital we go to but we went ahead and took it because it is cheaper than staying at a hotel. So we're about an hour away from STL and a friend that we made last time we were up here called and mentioned that he had seen that other RMH and didn't recommend that we stayed there. So I called the one we preferred to stay at and they happened to have a room open. I told them we wanted it and would be there in an hour. We get to the house, say hello to some of our friends that are still here and then I went inside to tell them that we had arrived. The girl took Damon and I up to the room and when she opened the door I think my jaw dropped. The room has one full size bed and a night stand. It's a good thing that's all the furniture because the room itself is only about 8ft x 12ft. That is soooo small. And it's even smaller now because we had to put a roll away bed in there and Damon's play pen for him to sleep in. It's pretty funny watching the three of us (me, mom and Myles) trying to manuever around in there. But it's only for three nights and we are glad to be here. I'll try to get a picture before we leave. We're getting ready to leave for Damon's test. All prayers are appreciated. Talk to you later.

Sarah

Trip

We are getting ready to leave for STL in about an hour. As of right now we don't have a room at Ronald McDonald House so we aren't sure were we will be staying. If we don't get a room there it will probably be at a motel or hotel. Please pray that a room will come available there so we have a place to stay that's cheap.

Tomorrow we have to be at the hospital at 10:30am to check in, then the profusion scan will be right after that and when that's done we will go to the heart station to have an echo and ekg. Please pray that they can get Damon's iv in on the first try. I hate to think of him going thru what happened last Monday again. Pray for our safe travel too. I'll do my best to update tomorrow after we know what's going on. Talk to you later.

Sarah

Happy 1/2 Birthday Damon!!!

I know it may seem silly, but yesterday was Damon's 1/2 birthday. I think we have a lot to celebrate. He has sure been through a lot and still looking at him you would never even know he is sick. Sarah and Damon will be going up to STL on Tuesday to have his profusion scan and hopefully if all goes well they will be home soon after that.
Also be praying for me. Ever since Sunday I have been feeling really weird. I have been having really bad back and neck pains, as well as really bad headaches. Along with the headaches and other pain is nausea. I am sure some of it is stress, but in the back of my mind I am really worried that something else is wrong. Not that I couldn't take it, but it would be nice to have a stretch where nothing bad goes wrong in our family. Just think of me in your prayers. If I am not better by Monday I am going to go back to the doctor so he can run some tests. Talk to you all soon.

Profusion Scan

On Friday morning Dr Tong called and said he had spoken w/ Dr Gandhi and they wanted to see if we could have the PS done in Springfield instead of STL. Dr Tong was going to check into it and give me a call back. He said he hoped to get one scheduled for the first part of this week. I never heard back from him on Friday. So this morning I called his office first thing to see what he had found out. The girl that answered the phone said that when he got in she would call me back and let me know what was going on. I had a feeling that they might call back and ask if we could come up there today. She ended up calling back around 10:30am saying just what I had anticipated. We were to check in at Cox South at 1pm. We all rushed around and got ready, I took Myles to my mom's and we were on the road. (Jeremy stayed home because he was sick today.)

If I haven't explained it before, the profusion scan is like a fancy xray. They inject dye into an iv and then they take xray pictures of all sides of your lungs while the dye flows thru your blood so they can see how well the blood is reaching your lungs. So when we got into the room the first thing they had to do was get an iv in Damon. I asked the girl in charge if she was going to get someone from the pediatrics dept so that he wouldn't have to be stuck multiple times. She assured me that their radiology nurses were good and they wouldn't stick unless they were sure. Two ladies came in and they both stuck him with no luck. They called a PICU nurse in and she stuck him twice with no luck. They said they were going to call in the NICU nurses. I asked them to please call Dr Tong and see what he said about them sticking Damon so many times w/ no success before they did it again. He said that they should try one more time and if they couldn't get it to quit. So the NICU nurses tried and didn't get it. By this time he had been stuck 5 times. Everytime in between people coming in and out and poking around on his arms and legs he fell asleep because he was exhausted from screaming so much. The girl in charge asked me what I wanted to do and I said no more, I don't want you to try again. They said we could reschedule for another time, but I told them I was just going to talk to Dr Tong.

After talking with Dr Tong and Dr Gandhi today we are going to just go up to SLCH to have this test done which was the original plan anyway. The whole experience was terrible for both of us. Add to that the
conversations I had with Dr Tong and Dr Gandhi that made me feel so stupid and like I had made the wrong decision. I'm soooo tired of putting Damon thru this stuff, I just want him to get a break for a while. He is so brave though. In between the third and fourth and fourth and fifth sticks he was smiling at me right up until they stuck him. I feel so lucky to be his mommy but so overwhelmed and inadequate at the same time. I'm just grateful that he is young enough that he won't remember most of this when he gets older. Talk to you later.

Sarah

Dr's visit

We went to see Dr Tong today. Damon is 25 1/2 inches long and weighs 13lbs. Sats were in the high 80's without oxygen. Dr Tong said his lungs aren't quite clear enough yet so we are going to continue the lasics, but only once a day now. His echo was fine, he said his ventrical looked happy. He had the ultrasound tech recheck his desending aorta after she had done the initial echo but when he talked to us about it he wasn't concerned. That's the spot that was ballooned when he had his heart caths in March. They way they measure it is by how fast the blood flows thru that spot. The number is called a gradiant. One month ago it was 15 and today it was 35. The higher the number, the faster the blood is flowing thru that spot. If the blood is flowing faster it means that there is a smaller space for it to get thru (meaning the narrowing could be coming back a little.) Like I said, Dr Tong wasn't concerned about the number being higher right now because his sats were so good. However, I think that's a big jump in just one month so please pray that it will go down by the next time we go in. When we go to SLCH in a couple of weeks they will do an echo of their own so we'll see what the cardios think of it up there. They are the ones that caught it the first time anyway.

When I asked him about the O2 he said that he thought it would be ok to stop using it now, but for us to watch him at night for the first couple of nights to make sure his breathing wasn't labored or anything. He's been asleep since 8:15 and so far so good. I think he will do just fine. Dr Tong also said that looking at his chest xray, it looked like the profusion was getting better between his lungs, meaning that one wasn't getting way more blood than the other now. It's still not equal, but he thought it looked better. I spoke with Dr Gandhi on Monday and he said if Damon is off the O2 then he might not need to come up for this 2nd profusion scan. Dr Tong was going to call and talk to him about it after we left today. He thinks we do need to still have the test just to make sure. I'm agreeing with him, but we still don't know for sure who will win the debate between Dr T and Dr G.

Also, the Thursday after the profusion scan test Damon has an appointment with a urologist to see about getting circumcised. This is something that Jeremy and I would like to get done for Damon now while he is still little and will recover easier. But my mind is uneasy about it, I just don't want him to have any complications. So pray for us to have wisdom about this decision.

Something else I have to tell you. The other day I asked Myles where daddy works and he said "JennyPenny's" ! He's so cute, I can't stand it! Talk to you all later.

Sarah

Sooner or later...

I knew it would happen. We have been getting statement after statement from the hospital and doctor's offices since Damon was born, but with the help of our Lord we have yet to owe a penny out of our own pockets. Well on Friday we received a statement from the company that flew Damon to SLCH the second time saying that they haven't received anything from our insurance company so we needed to contact them to make payment arrangements. At the time of that flight all Damon was covered with was MO Medicaid so I called them today and was informed that since that company is not a provider for Medicaid they were not going to pay for the flight. The lady said that after I got the letter denying the coverage I could request a hearing to dispute the denial. Then today we got a bill from the company that does the billing for Damon's cardio dr. Half the visits on there didn't have any insurance billed on them so I called and gave them the correct info to refile.

Earlier today I was getting so stressed about it and I started doing some calling around (which I hate) to find out everything I can about what went on the night of that second life flight so that if we do have to do a hearing I will be well informed about who's decision it was to use that company. So please just pray that God will work both of these situations out in our favor. This is not small change we are talking about. As they say on those Wendy's commercials; it's about 17,000 crispy chicken sandwiches combined. Makes you want to laugh right? Or cry, I'm not sure. But I think we'll just laugh and keep right on rejoicing over our little miracle baby who is soundly sleeping in his room right now. Talk to you all later.

Sarah

Weekend

On Friday we ventured out to daddy's work (JC Penney) and got the boys' pictures taken. Damon was first and he did wonderful. He is so cute I can't even stand it. Myles was next and he did wonderful. He is so grown up now and still so cute I can't even stand it. Then it was them together. Myles was holding Damon on his lap and Damon wasn't really smiling all that much and I was next to them with my arm under the white sheet holding Damon's back so he didn't fall. I was going to switch places with Jeremy so I could try to make him smile and while we were switching places Myles let go of Damon and he tumbled off his lap and fell on his face on the table. That was the end of the pictures. But thankfully we got enough good options to pick from. Damon's coloring has been so much better since surgery #2 but in those pictures we could still tell a difference in Damon and Myles' coloring. We will be able to email them in a couple of days so if you want us to include you in that email, please make a comment and let us know and be sure to include your email address.

Saturday we did some stuff around the house in the morning and then went to Wal*Mart after lunch. It happened just as we were walking in the door. This woman and little girl asked if they could see our baby. I said sure. She was looking at him and said how cute he was and then says "How old is he, two or three months?" I say actually he's almost 6 months. She looks surprised and then as she is saying "Oh you're just a little guy aren't you" she reaches out to touch him and I ask her please not to. I apologized and said that he has had some health problems and we are just really careful about germs. She didn't seem put out though. Then she said "I don't know what's been wrong with you but you look just fine to me."

The whole rest of the time thru the store I walked around with a knot in my stomach because I was afraid someone else was going to try to touch him and I would have to tell them not too. Then for a little while the afternoon I couldn't stop thinking about the fact that she thought he was only two or three months old. It just made me sad. Today in church we sang a song with a chorus that says "I will rejoice" and I thought about yesterday and realized that even if I do have a reason to be sad I will rejoice anyway because Damon is doing well. Who cares if he's small? Not me! Where he lacks in size he makes up for it in cheeks and smiles! Talk to you later.

Sarah

Update

It's so hard to think of title's sometimes!

Damon is doing well, he tried carrots for the first time last night. He made a funny face when I first put them in his mouth but he ate them all so I guess he liked it. I am also fairly certain that he has a tooth poking thru. I can't see it yet, but I can feel it. I'll let you know for sure in a couple of days. He is still only on oxygen at night but if he wakes up and I don't go in there right away, he pulls the nasal canula out of his nose and it goes in his mouth and he sucks on it. Early this morning he was crying and I went in to give him his bonkie and he couldn't keep it in his mouth so I turned on his night light and the nasal canula was in his mouth too so no wonder. I have to laugh at myself sometimes when I get up in the middle of the night to put him back to sleep. I am so out of it, it's a wonder I don't put the bonkie in my own mouth. Once I was trying to give it to him backward and was getting so frustrated because he wouldn't take it. Oops!

Myles sees Damon taking medicine all the time, and I take vitamins at night so he is always wanting to take meds too. This morning we were in the bath room and he was telling me all the different medicines he has. The orange and the purple and the red. Then he says he needs some orange because he has a cough. "Cough, cough, see mom I need some medicine." If he only knew...

I can't remember if I mentioned Blake Miller on here before but he was born on April 13th and he has HLHS too. He had his 1st surgery the Tuesday after he was born and he got to go home yesterday, praise God! Say a prayer of thanks to God for another miracle baby! Also please continue to remember these little ones in your prayers: Luke, Jacob, Malory, Jaden, Garrett, David, Hayden and Liam. Talk to you all later.

Sarah