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. 

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.