Going Home???

Cameron has been doing good since he moved to step down. He is now on full feeds and they just started bolus feeds today. Last Thursday, Cameron got his picc line out. They have been trying to get him off oxygen, but he has been hanging onto it. He is on half a liter of oxygen and they said it might take sometime to get him totally off.

If all goes as planned, we are hoping to take Cameron home tomorrow. We have been trying not to get too excited because we have learned how quick plans can be changed and that our "plan" is not always God's plan. Cameron had a little fever this morning, but it went away with Tylenol and so far he hasn't had another one. He seems like he might be teething, so we are hoping it was nothing else. Thanks for your prayers!

Step Down Unit

Saturday morning, my mom came and stayed with Cameron and I went home. I spent time with family and Jordan and I went to Javan and Josie's to see them and the new baby. Weston is so cute and is so tiny. Adelynn keeps growing and loves babies, but is not quite sure what to think of her new baby brother. Jordan and I went to church Saturday night and then left in good time Sunday morning to head back to Cameron.

Cameron's medications all got changed from IV to oral on Saturday and he has been having a hard time tolerating them. With feeds going up and all the medications, he had been spitting up. He had always spit up, so it is hard to know if what is normal. Today, we got moved out of PICU and to step down. It was a busy day, but we are so glad we are a step and closer to getting home. Cameron seemed to have a little bit of a rough day with his oxygen going down when he spit up and was upset. He hasn't been dropping his oxygen saturation much since his last surgery and getting off the breathing tube. I'm hoping he does better tomorrow, they say that when they move children to other units the children seem to have a rough day with the change.

I know you would ask, " So.... When do you think you can go home?" God has taught us, even more so in the last six months, that we need to take one day at a time and that we have no control. God is in control and we are so glad, even though many times we want to question "Why?" They can plan a day for us to go home, but we aren't going home until Cameron is discharged and everything is packed and ready to go. I know it wont be this week, but maybe next. Only God knows what day we will be able to go home as a family.

Oh...and Cameron is really 6 months now!

Two Big Days

Yesterday and today have been big days for Cameron, with lots of good progress. Yesterday Cameron got off the RAM cannula with the ventilator. He did great and his oxygen was actually higher on the high flow. He likes to do things his own way and when his blood gas looked better after going down on oxygen, I thought it was quite funny and great. They also started him on a little bit of feeds yesterday. Cameron got a new cousin yesterday! Javan and Josie now have a beautiful baby boy, Weston Reed (7lbs, 20 inches). We are so excited and I can't wait to see him.

Cameron did good overnight and today brought more good progress. The doctors are slowly working on changing his medications to go through his g-tube. They are still having a hard time getting his electrolytes stable. The biggest change today was that they moved Cameron off of high flow and put him on low flow/regular oxygen setup. He did really good with the change and his oxygen was even higher in the 90s. The highest I saw today was 99! When they first made the change this morning, he was working harder the breath when he was awake. As the day went on, he seems to be breathing more comfortably. We are so excited for the changes that have been made and thankful how good he is doing with them. We will stay in the PICU for at least the weekend, as they work on increasing his feeds and getting his electrolytes where they should be. Cameron continues to be happy and smile and talk to us.

Slow Steps

Last Friday morning, Cameron was doing good and my mom came to be with him so I could go home and come back Saturday afternoon with Jordan. It was really good to be home a little bit. Cameron started getting fevers after I left on Friday. We were really disappointed and afraid what blood cultures and labs would come back with. Jordan and I stopped at Jacob and Beth's a little bit to drop something off and see them before we went to Cleveland. Melea slept the whole time we were there, but Malachi was so excited to see "Jordy." He loved Jordan's hat and wanted to wear it. I really miss being at home close to family and friends and the Church.

All weekend Cameron had fevers, high ones too. He was pretty miserable all weekend and Monday. He was very uncomfortable and wasn't sleeping much day or night. They were trying to figure out what was wrong, all his cultures were coming back negative. Which we were glad, but we still didn't know why he was getting fevers. He was doing this before his last surgery too. They kept thinking maybe he was withdrawing from morphine, but didn't know for sure. Monday they started him on methadone to see if that would help. He continued to get 103 fevers, but the methadone did help him and he started sleeping and being more comfortable.

The last few days we seemed to be getting no where, they weren't trying to go down on oxygen and they were constantly trying to get his electrolytes normal. They don't like to go too fast with Cameron, but it seemed they were going too slow. I spoke my concerns to one of Cameron's doctors and she agreed and said she would talk to the other doctors and make some plans. Cameron has been sleeping a lot with all the sedation and methadone he is still on so they started going down on those. They plan to get him off the RAM cannula today and put him in high flow oxygen, so we will see how he does. Then they plan to start feeding him a little bit. Cameron has not been himself for a long time, but today he is smiling and talking and really happy. He is more awake and happy than I have seen him for weeks and weeks. I hope and pray that he will do good with the changes they make today.

Hopeful

This past week has been a hard week. Since surgery last week Cameron has been struggling. He had been having these episodes where he dropped his oxygen way down. He could be in the 70s and all of a sudden be in the teens. Some of the time this would be when he was mad and he would turn purple on us. Then he started dropping his oxygen even of he wasn't upset. It was scary and we were really worried and just wanted someone to tell us what was going on. The lowest he dropped his oxygen was probably 9 (if it was reading right) when they put an IV in. He has a picc line in, but some of the medication he was on couldn't go through the same line. It has been very hard for me to be patient because it seemed like we were getting no where. We wondered how much more Cameron's body could take and if God would him Home to be with Him. God has a plan for us and we are so thankful for the time he gives us as a family, however long that is.

The past several days, they have been working on going down on the ventilator settings. Cameron was doing pretty good, but still had plenty of extra fluid in his body. Yesterday, I thought would be they day they would take the breathing out. Cameron was still holding his breath some and seemed to fight more and more against the ventilator. His chest x-ray was the worse than it had been and it had everyone wondering. I had talked to the respiratory therapist before rounds about getting the tube out. We thought that the breathing tube was just making things worse for Cameron. His tube was the size of a straw or smaller, Imagine or try breathing through a straw. He was fighting against it so much it was doing more harm. During doctor rounds, they made a good, but busy plan for the day. They got an echo to make sure everything still looked okay, which I never heard so I assume it was good. They also worked on his picc line to make it a double line. They had to give him extra sedation and paralytic to do that. His picc line wasn't drawing blood, so they also put an arterial line in. He had lost his other one the night before, but the new one didn't last long enough to get labs. They started Cameron on a different med drip to try to get him to get rid of more of the extra fluid in his body and that really helped. So much happened yesterday, I probably won't remember it all. Once they did this stuff and added some medication for the lungs, they did another x-ray and it looked better. The plan was to get the breathing tube out yesterday afternoon, but Cameron was too sleepy from the paralytics and sedation he got. I was disappointed, but knew they would try in the morning. My mom and Jason came to visit last night and then Jordan came after work.

Cameron had a really good night and hasn't dropped his oxygen since yesterday during rounds. I got to the hospital around 5:15 am and they took the breathing tube out at 6:30ish. We have been through this so many times, that they will let me stay in the room. Cameron did great getting the tube out. His oxygen didn't drop and he hardly got upset. Cameron's oxygen has been 70-low 80s, but since the tube has been out it has been 80-94. Everyone is so excited and very happy with Cameron's progress. This morning he got a blood transfusion because his level was low and he has been pale. Today they are working on going down more on sedation and going down on his oxygen settings. They have already been able to go down some. He is on a RAM cannula, which is a larger cannula that is hooked up to the ventilator to give extra support without the breathing tube being down his throat. He was on this before he went into surgery last Wednesday. We are hoping for a good night for Cameron and then hopefully more progress tomorrow.

Thank-you much for the prayers. We have so much to be thankful for.

Cath Lab

Yesterday, Cameron was taken to the cath lab around 9. The plan was to put a stint in his narrowed artery, get a good look inside his arteries/body, put a picc line and possibly block of some veins that would help his oxygen levels be higher. They got a picc line in and also put a arterial line in. When they looked at his narrowed artery, they decided to balloon it up instead of putting a stint in. They said it was just so small for a stint but that before his next surgery (3-5 years old) he would probably need the stint but in. During the procedure his blood pressure started dropping, but they were more prepared for it since it happened before in the cath lab. They think his body just was having a hard time with all the stress on his body, especially with major things down two days in a row. They were able to give Cameron some medication and some blood and get his blood pressure stable. After that happened they decided to be done with the procedure, instead of putting his body under more stress. When they brought Cameron back to his room, his oxygen saturation was low and his blood pressure was low. They put him on a pressure medication, hoping that would help with his oxygen saturation a and his blood pressure. His oxygen saturation went up, but it took most of the evening before his blood pressure was up and staying up.

When I got here this morning, Cameron was wide awake and smiling at me. It was so good to see him happy and comfortable. He had a good night and they have been working on going down on the ventilator settings. He did have a fever in the night, but they aren't too concerned since he had been having some before. We hope soon he will be ready to get the breathing tube out. They won't try to get the tube out today because he still has extra fluid in his body so they want him to get that off. They also want him to be able to rest today after all he went through the last 2 days. Today they started giving him 5ml an hour of formula through his new g tube. It is so nice to have the ng tube out of his nose.

Another Surgery....Done

Cameron's surgery went well today. They took him to the operating room at about 9. He had 3 different teams work on him today. The first was a throat specialist team to just look at his upper air ways for damage and or issues. The upper part looked great. The lower had a soft spot and it would collapse slightly when he breathes but that is common and is usually grown out of with no work needed. The next team put the g-tube in his stomach for feeding him. After 24 hours that can be used. No trouble with that either. The last crew was Dr. Stewart and company stitching his diaphragm down. That went well also. It was done through just a small incision in his side. We got to see the before and after x-rays of his lung and its very obvious that this made a huge difference on his left side. The plan for tomorrow is to go in the central line that was put in today and install a stint in a narrow spot in his artery. The artery is about 5mm wide and in this particular spot in looks to be about 3mm which may be causing pressure and flow issues. So he will be left on the vent until after that procedure is done tomorrow. He's doing well breathing over the vent right now so hopefully that will continue, as it has been an issue getting him off the vent a number of times in the past.

Thanks so much for all the prayers!

These pictures are before surgery and then after the surgery today.