More Pictures

We have been doing good. On Monday, i thought we might have to go back to Cleveland. Cameron's g-tube got plugged with his med. I called to Cleveland and they said to try to put ginger-ale in it otherwise, we would need to go to Cleveland to have a new tube put in. I prayed and prayed, hoping that the tube would unclog. After letting the ginger-ale sit it the tube, I tried again and this time it cleared. We were so thankful! Otherwise Cameron is doing good and now weighs over 15 pounds.

Zion and Moriah came to town Monday. Zach and Jenny are hoping to be able to come tonight after his doctor apt, as long as he feels like he can travel. He has not been doing very good. Monday night my family came over in the evening for my birthday and all the grandchildren were together for the first time. It was a loud house and Cameron wasn't too impressed.

Camera Pictures

Cameron has been doing good. We have a doctor appointment in Cleveland today and are hoping it goes good. Just wanted to post a some better pics from my camera.

Haircut

Today a good friend of mine (Cymbal) came over to spend the day with us. We had a good day and she helped me get stuff done around the house. She also gave Cameron his first "real" haircut, meaning when the doctors shaved some for IVs that didn't count. It was hard to have his hair cut but you know from the pictures that it was past due. I think his hair looks nice and it wasn't easy to cut with it being a lot shorter in the back and being shaved by one ear. Cameron liked to play with his hair, so he is not sure what he thinks. He can still play, there just isn't as much. He has been up most of the day, but for the most part had been really happy, talking and smiling. Cameron's home nurse came for a check-up today and she was impressed how good he was doing compared to the last time she saw him. She will come once a week to check on him. He wasn't happy with her because use she had to give him a shot.

Giggling

Today Cameron has been playing a lot and hasn't slept much all day, hopefully that means he will sleep good tonight. Today Cameron laughed for the first time, it was so cute! He kept giggling at me when and once he realized he could make that sound he laughed more. It is so wonderful to see him continue to grow and make new milestones.

Doing Good at Home

We are so thankful to be home. The first two nights were rough for us, Cameron kept waking up and gagging. Last night was a lot better and i got more than 2-3 hours of sleep. Yesterday, we went to Cleveland for a doctor apt and for Cameron to get his blood drawn. His sodium level was low before we brought him home, so he gets sodium now and they needed to make sure the level was coming up. The appointment went good and the blood test showed Cameron's sodium did go up. Not where it should be, but it will hopefully continue to go up. Next Thursday we will go back to Cleveland to see Cameron's cardiologist and nutritionist. We also have a home care nurse coming to check on Cameron once a week.

Cameron loves to lay on the floor and play with his toys. He is doing really good, probably the best he every has been.

Home!

Today we brought Cameron home from the hospital. We got home around 2:00 and we are so thankful to be home.

Pressing On

We were supposed to go home yesterday, but Cameron was having some issues with feeds Tuesday night. He had been gagging a lot on Tuesday after he was back on full feeds in his new j-tube. So when he had lots off gagging and throwing up bile in the night they stop feeds. His feeds were restarted but now he needs to get back to tolerating the full 30 calorie formula. We got moved to step down today since we won't be able to go home at least till Monday now.

Cameron is doing good otherwise and has been really happy. He smiles a lot, but knows when I'm trying take a picture of him and he stops smiling!

G-J Tube Procedure

On Sunday, my mom came and was with Cameron while Jordan and I went go church for the afternoon and evening. It was really good to be at church. Josie and her children brought me back to Cleveland today. Cameron had his g-tube changed to the g-j tube this afternoon. The procedure went really good. He was sedated for the procedure, but didn't have to get the breathing tube in just a tube that goes into his mouth, but not down his throat. He is back on a half liter of oxygen and so far doing good. He is still sleeping from the sedation, but has moved a little bit and peeked at me a couple times. The plan is to start feeding him clear fluids through his new tube in a few minutes and if he does good with it they will switch it to formula sometime tonight.

Waiting....

Cameron has had a good week. He got off the RAM cannula on Sunday and then off of high flow oxygen on Monday. He started doing really good and was the happiest I have seen him for a while. He has been smiling a lot and in such a good mood. Physical therapy has been working more with him and you can see in the pictures the good belly time he got. I have been needing to push this week to get answers for how to help Cameron with feeds and the gagging. The new teams that needed to see Cameron seemed to be taking there time coming and it was getting frustrating. We were afraid he would be all ready to be home, but be waiting in the hospital still for answers. Cameron has been doing good with feeds into his intestines, so it was decided that they would get his g-tube changed to a g-j tube. They will extend his g tube so it goes into the intestines and get rid if the feeding tube in his nose. The radiology team agreed to do the procedure in the operating room on our floor with the cardiac anesthesiologists. Since radiology is doing it, he should need very little sedation. The pulmonary doctor started Cameron on a breathing treatment 3 times a day to help keep his airways open and to thin his secretions. I said we would give it a try, but I wasn't sure that it would work much. Cameron has been having good coughs with the treatments, but most of the time still ends up gagging on the secretions and throwing up after the treatment. I want to talk to the doctor and see about maybe just doing the treatment once a day. Well the g-j tube was scheduled for Friday (yesterday) at 8:00 am, but on Thursday afternoon around 4:00 the GI doctor came in and told us they didn't have the right size tube to do the procedure. Cameron has a size 12 g-tube and the smallest they have here is a 16. They said they could put the 16 in but it would mean totally sedating him with the breathing tube to stretch the hole that is already there, plus pain later on. There was no way we would put him through that. Need less to say, we were very unhappy. The GI team had been asked earlier in the week if they had everything they needed and they said they did. They then ordered the size they needed, but had to cancel for Friday. The procedure is rescheduled for Monday at 1:00ish. We are still in PICU because everyone wanted Cameron kept here till the procedure and M40 was full when they realized the procedure was canceled on Friday. Cameron is considered a border in PICU. We are happy to stay on the PICU cause we are closer to the doctors and because we get our own room. It is frustrating to have Cameron at a point where he is doing good enough to be home, but can't because we are waiting for the procedure. It really is the only thing right now that is holding us here. We just hope that things continue to go good and the procedure goes good so we can go home next week. We just need to trust that God has a plan to delay the procedure until Monday. So we wait.