Tough News

I got sick on Friday and was finally starting to feel better yesterday, but decided to stay away from Cameron until today. My mom came and was with Cameron Friday and Saturday. She was a big help. Jordan and Julie spent time with Cameron yesterday and we were supposed to go home today. Yesterday, Cameron started breathing hard and they did a chest x-ray and culture to see what was going on in his body. His chest x-ray showed that his left diaphragm is pushing up into the lung and not working very good. Just hearing that, we knew we weren't going to be taking Cameron home for Christmas. They also did an ultrasound. We needed to wait until this morning when Cameron's surgeon and doctors before knowing what they thought and what needed to be done. The surgeon, is not sure what happened because he said that he wasn't even near it during that last surgery. He said Cameron needs surgery to fix the problem. He will go in with an incision in his side and then put some stitches in the diaphragm to keep it from pushing into the lung. The plan was to do surgery on Wednesday, but the culture came back positive for a respiratory virus so surgery will have to wait. Lots of disappointments, but God is still in control.

Preparing to Go Home

We have had some ups and downs this past week, but through it all Cameron has made good progress. On Tuesday, Cameron was taken off high flow oxygen and put on a low flow/normal oxygen. He has been doing pretty good on it and they have been able to go down on the oxygen some. Cameron's last echo showed that his heart functions looked really good with a lot of improvements between this echo and the last. Yesterday, Cameron got his pic line out and he was moved out of PICU to step down. We are so thankful Cameron is doing so good now. Today Cameron got switched to a normal ng tube for feeds and also on bolus feeds every 3 hours. He has handled the change pretty good. The doctors and nurses are getting everything together so we they say we can go, so we don't have to wait on prescriptions and stuff. We have oxygen set up for at home coming tomorrow because he will probably need to be on oxygen at home for at least a little while. If all goes as planned we hope to be able to take Cameron home for Christmas, Sunday or Monday. We will see' only God knows what is ahead. Thanks much for all the prayers!

Recovery

Last Friday, Cameron had another echo and it was about the same as the last one. They decided to go up on his heart medication and give him a couple more days to get stronger before pulling the breathing tube out again. Everyone decided it was best to go slow than to risk another set back. They started feeding Cameron some while the breathing tube was still in. Cameron started doing better and on Sunday they took the breathing tube out and he did really good. They kept him on the ventilator, but with a special cannula in his nose. I got the hold Cameron for the first time on Sunday after the tube was out. It is so good to get hold my baby again. Cameron's feeds had to get stopped when he got the breathing tube out and yesterday the put a special ng tube in and started feeding him. Yesterday he was taken totally off the vent and put on high flow oxygen. They are going down slowly on the oxygen and is on 3 litters. Once he goes down to two litters of oxygen, he can be taken off high flow to a normal oxygen setup. Cameron is also getting more feeds today, which makes him a happier boy.

As far as us taking Cameron home, we are taking it one day at a time. I have asked a couple of Cameron's doctors if they think it is possible for us to have Cameron home for Christmas and they said they think it is. They said to not give up hope. This year for Christmas, the best gift for Jordan and I would be to have our son home for Christmas! God has a perfect plan for us and that's what we want.

Last week I went home Thursday night and for part of Friday. Jordan had his work Christmas, so I got to go with him to it. I was with family and spent some time Beth, Malachi and Melea and also Josie and Adelynn. Zion and Moriah in Ohio now while Zach and Jenny are in Hati. Today my mom, Josie, Adelynn, Zion, Moriah and I spent time together in Cleveland and went to the Botanical Gardens. The kids really liked the butterflies and the train ride.

Slow Progress

On Monday, Cameron gave me a scare. The respiratory therapist was suctioning his breathing tube out and he got really upset. He ended up holding his breath, turning purple and then passing out. He was fine, just really scared his mom. My mom came later in the day and stayed in Cleveland with us. On Tuesday morning, they thought Cameron was ready to get the breathing tube out. When they tried he lasted about 2 minutes and stopped breathing. They had to do compressions on him and give him several doses of epi before having to put the breathing tube back in. Everyone was so disappointed that Cameron had to get the tube right back in. After this episode, he was the most awake I had seen him since surgery. He was content and looking around and looked like he wanted to smile at us. Josie and Adelynn came to visit and then Josie spent more time with me and my mom took Adelynn home. They did a echo and ultrasound to make sure that everything looked okay with his heart and also to make sure his diaphragm was working. The ultrasound showed that the diaphragm was good, but the echo showed that the heart's right ventricle's function was not as good as it was before the surgery. They are thinking that it was caused from the compressions and problems he had that morning. Last night my mom came back and I spent the night in Cameron's room because they were going to get him off some sedation in case they decided to try to take the tube out in the morning. I wanted to stay close because Cameron calms down for me. Right now the plan is to let him relax and grow stronger the next couple days. They started him on a slow continues feed today, also On Friday, they plan on doing another echo and seeing how his heart looks. Depending on the echo the hope to get the breathing tube out Friday or sometime this weekend. Cameron is having a good day today, he now has both the chest tubes out and his incision seems to be healing well.

God's Time

Cameron has had some ups and downs since surgery on Friday. On Saturday, Cameron needed a blood infusion. He was pretty swollen in his face and some all over his body, but nothing like the first surgery. In the afternoon, he got the breathing tube out and was doing pretty good. He was breathing pretty hard, but they hoped that would get better with sometime. Cameron was doing good when Jordan left for the night, but we knew it was possible the breathing tube would need to go back in. At 4am on Sunday morning, Cameron spiked a fever and his oxygen saturation dropped. He was having a really hard time breathing, so he had to get the breathing tube back in. They got blood cultures to check to make sure there was no infections. They hoped he got a fever just from surgery and being bundled too much. Even though he had to get the breathing tube in, he seemed to be doing good on Sunday. His swelling had gone down a lot and he looks more like himself. They wanted to let him get all rested up to take the tube out in a day or so. He has been kept mostly sedated so he wont be uncomfortable. Today Cameron's x-ray showed fluid in his chest that his one chest tube hasn't gotten out yet. They put a smaller chest tube in to try to get the fluid out. So far the blood cultures are negative for an infection. Right now Cameron is getting more blood since his blood levels are a little low. One thing after the other, but overall Cameron is doing pretty good. The doctors are hoping to try to get the breathing tube out later today or tomorrow.

I just need to keep reminding myself that God has a special plan and all in His time. We are so ready to take Cameron home, but only God knows when it will be the right time.