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.

Back to the PICU

Friday night, Cameron spiked a high fever and needed more oxygen. They moved him to PICU and put him on high flow oxygen. I was with Cameron most of the night, just holding his pacifier in and trying to get him to sleep. He would fall asleep, but when his pacifier would fall out he would start fussing. His feeds had to be stopped when he was put on high flow so he was a hungry boy. It was a rough night, with no sleep for me. I did finally leave the hospital and went to bed for several hours around 5 am. They did more cultures to see if this time anything would be positive for infection or virus. He got an IV put in and the put him on IV antibiotics and fluid. Cameron has been sleeping a lot the past several days and when he wakes up he cries. He just has not been himself. Saturday, his face and some of his body started getting puffy. There has been so much going on and Cameron is keeping everyone on their toes. Jordan and I were able to get away a little while yesterday to go to my cousin Samuel's wedding reception. Cameron had a pretty good day yesterday and the fevers seemed to be gone. Starting last night, the fevers were back again. All of Cameron's cultures are coming back negative, so they still can't figure out why he is getting fevers. They are 102-103 degree fevers too. Today they did an echo and saw that the left pulmonary artery looks narrowed more than before would could be adding to some of his problems and maybe the swelling.

Right now the plan is the go forward with the diaphragm and g tube surgery on Wednesday and then see how he does. He might also need a cath to look at the arteries better and possibly but a stint in to open the artery. Only God knows what this week holds for Cameron. We are so thankful that He is in control and has a perfect plan for Cameron.

Surgery Postponed

Well, no surgery tomorrow. Cameron started having fevers yesterday and has been having some upper respiratory problems. So far all cultures are negative, but something is going on. They thought maybe there was in infection in his throat, but the scope didn't show anything. They started IV antibiotics on him yesterday, just to be safe. The earliest they would do surgery would be Monday, but it all depends what happens the next few days. When he is sleeping he is so comfortable, but when he is awake I can tell he doesn't feel good.

I know God has a reason for everything and a perfect plan for Cameron, in times like these it is so hard to remember that.

Surgery Thursday

Cameron is growing and now weighs over 12 pounds. After being away from him while Jordan was sick, Cameron seemed to really get bigger. He has been doing pretty good. Friday he started wheezing and struggled more with keeping his oxygen saturation up. I went home to be with my family, Zach and Jenny and the kids were still here. We got together with the Greenbank family. That evening Cameron's oxygen kept dropping and they ended up giving him some breathing treatments. Since then though he has been doing better. Yesterday, they did another culture swab and so far it is coming back negative. For Cameron to be able to have surgery this week, he needs a negative culture. We should know for sure tomorrow. Cameron's surgery had been moved to Thursday because they want him to be the first OR case of the day since he has to be without food for so long before. On Wednesday, the other patient needs to go first. During the surgery they do plan on putting a g tube, stomach tube in. I am kind of excited about it because that means Cameron won't have to have a tube in his nose.

Today, I gave Cameron his first "real" bath. Cameron always seemed to have IV lines, stitches or something keeping me from putting him in water. He had always just had sponge baths. Today I sat him in a little tub to give him his bath. He does not like his sponge baths and wasn't sure he liked soaking in warm water either. I hope to post some pictures of his bath later. Hope you like the cute pictures I have today.
Cameron's daddy thinks he needs a hair cut, what do you think? His hair sure is long when you stick it up! I cut Jordan's hair but I'm not sure about cutting a baby's hair.

Awaiting Surgery

Surgery for the diaphragm is now scheduled for the Wednesday, Jan. 9th. Not too much has changed with the little guy lately, Cameron has been doing good and feeling well. He has gotten a little congested. They think part of that is because he can't cough stuff up very well with one lung not functioning correctly. Last Thursday Joy came home from Cleveland for the Rufener Family Christmas.  In the evening I began to get a fever and came down with a nice case of strep throat so Joy has been home taking care of me. She plans to head back up in the morning as I'm up and planning to go back to work again.

It has been so hard for me (Joy) to not see Cameron since last Thursday evening.  I wanted to be able to take care of Jordan, buy I missed Cameron so much.  It has been nice to be home and really nice to be able to go to church Sunday afternoon and this morning. Strep throat can take a while to show up, so I have been afraid to go see Cameron and get him sick.  I am planning to go back to Cleveland to be with Cameron tomorrow. I am just hoping and praying that since I haven't got strep yet, that I won't and that Cameron can stay healthy.  Tomorrow the doctors are going to be doing pre-surgery stuff and talking to me about the surgery and the possibility of putting a G tube in during the next surgery.  A G tube is a feeding tube that goes right into the stomach.  I hope to find out more about it tomorrow.