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.

Roller Coaster Ride

Last week was a rough week and I wasn't up to updating the blog. On Wednesday, Cameron went to the cath lab and the procedure went really good. They put a stint in and blocked the collaterals with 9 coils. He got the breathing tube out in the cath lab and came back on only 2 liters of oxygen. He had a fever when he came from the lab, but they said that was normal. We were so thankful with how it went and the cardiologists said his heart was better than it every was. His last cath, his pressures were 17-18 and this cath they were 13-14, which is really good for a baby with his heart defect. They started Cameron on feeds that night and were going to slowly get him back to full feeds. He has always gagged a lot and thrown up with feeds, so that is one thing that is being addressed during this stay. So when they started feeds he started having problems again.

On Thursday, Cameron started off having a good day and we were getting ready to move him out of ICU to step down. We had the nurse check his temperature because he was hot and fussy. When they checked his temp was 102 and we all decided we should wait to move him till his fever went away. He started getting really fussy and I was holding him to try to calm him. He got really worked up and it seemed like he was in pain. He had three IVs in and he nurse was getting ready to take one at that wasn't working. Cameron was so upset that he started having a hard time getting his breath and started dropping his oxygen. I yelled for them to quick get the doctor and they were soon in there working with him. They had to give him a lot of extra oxygen support to get his oxygen to come up and stay up and then ended up putting him on the RAM cannula, which is on the ventilator. It took him a while to calm down and be stable again and I knew once he was on the RAM cannula it would be a while before he got off of it. They wanted to give him the most support they could without putting the breathing tube in. Thursday was not a good day and I was so discouraged. We did get into the Ronald McDonald House, but it was late enough that I still had to pay half the amount for a night at the Guest House since I checked out late. I was just so frustrated with everything that day and was glad when the day came to an end so I could go to bed.

On Friday, Cameron had fevers again. They did cultures to make sure he didn't have any infections or anything and all the tests came back negative. Cameron had a rough day cause of the fevers and also because he was hungry, but couldn't eat with all the oxygen support.

Since Friday, Cameron hasn't had fevers and he has been doing better. Saturday night they put an nd feeding tube in so they could start feeding him. This feeding tube goes right into his intestines. He has been doing really good with his feeds now, so we are just waiting for them decide a feeding plan for him so he won't be constantly gagging with feeds. Yesterday they got Cameron off of the RAM cannula and onto high flow oxygen. We were so glad for the change and Cameron has done really good with it.

Cameron had a good night and they have been going down on oxygen more and hope to have him off high flow by the end of the day. We are still waiting to see what the plan is to help Cameron with feeds and I hope tomorrow we will get some answers. All of these ups and downs have been hard on us. One minute things are going really good and next moment Cameron is having a really hard time. It is hard not to always be afraid of what problems will come next and hard for me to have hope that someday we will get to be at home as a family for longer than 9 days. We don't understand what God's plan is in all of this and may never understand. We do know though that God is in control and we need to have faith and trust in him.

Cath Lab Tomorrow

Cameron is going to the cath lab first thing in the morning. They want to do it now while he is healthy and doing good. They want to put a stint in, but they will need to modify it for him so it doesn't block a vessel. This is why they didn't end up putting a stint in last time. They ballooned the LPA that is narrow, but that did not last for long. Also, Cameron has a lot of extra collaterals that they hope to block so his oxygen can be higher. Again they wanted to do this during the last cath, but Cameron dropped his blood pressure and they didn't want to take the risk and stress his body an more. They are hoping that since Cameron is doing so good right now that the procedure will go good without him dropping his blood pressure. We will see... we are hoping and praying that it will go good.

My mom came to be with me last night and is staying with me for the procedure tomorrow. We have be staying at the Cleveland Clinic Guest House because we cant get into the Ronald McDonald house. We are on the waiting list for Ronald McDonald, but it sounds like it will be at least Friday if not longer until we can get a room.

Back in the Hospital

So we were home for only four days.... And it was so nice to be there. Saturday Cameron slept most of the day and his eyelids were a little puffy. I called the hospital and talked to the cardiologist and he said keep and eye on a few different things and call him in the morning. My cousin, Arthur, offered to come take care of Cameron for the night so I could get some sleep. He is an RN and works night. At 4am, Jordan got up to go milk at his parents farm. Around 4:15-4:30, Jordan starts yelling for me. Cameron 4am feed had be going about 10min and he started gagging and then choking. Arthur did back blows on him and ended up getting a mucus plug out of his throat, but Cameron went limp and stopped breathing. We had a pulse ox on him and it dropped and then went blank and stopped picking up. We thought we had lost him. Arthur did CPR and Jordan called for a squad. After some CPR, Cameron started to slowly come back to. Then he started crying and we were so relieved. The pulse ox started reading again and his heart rate and oxygen went up. I turned his oxygen up to 2 liters to help him recover and give him all the support we could till the squad got there. Cameron was doing pretty good when they got there and I had time to get ready to ride with them. I called Cleveland and they of course wanted to have Cameron brought there, but we went to the closest ER first for the doctor to check him out and make sure he was stable enough to travel. By then Cameron was awake and even smiled at me. We then got transported to Cleveland by a squad and Cameron slept and was calm. We came strait to PICU. I thought Cameron was doing good considering all he had just been through. They didn't do any major changes with Cameron's care than what we were doing at home because he was doing so well. They wanted to be able to see what he was doing with feeds before making changes. They did and X-ray and it showed that his heart was enlarged. Possibly because he had too much fluid in his body so they have him an extra med to help. Yesterday they were able to go down on oxygen and today he is now on half a liter which is what he was on at home. Today they changed his feeding schedule to get four bulus feeds during the day and have them run slow over 90 min. and then give him continues feeds at night. They want to see if he would gage so much with feeds and so far he seems to be doing better with feeds. Today they did an echo to make sure his heart was okay. The echo showed that the artery that they had ballooned in the cath lab six weeks ago was more narrow. We are waiting for his cardiologist to look at the echo tomorrow and for them to decided what needs to be done and how soon.

Cameron should be moved to step down in the morning. We have so much to be thankful for. We know God could have stopped what happened, but that wasn't His will. He knew what was to come and knew that Arthur would be there to help save Cameron's life. It is so amazing to think about it!

Home at Last!

We brought Cameron home yesterday! It is so good to be home and away from the hospital. We had a home care nurse visit today and tomorrow we go back to Cleveland for a check-up. Things will be busy with all the check-ups and trying to get 6 months of stuff put away after living in Cleveland. And of course taking care of our precious son! Since Cameron seems to get sick so easily, we will keep him mostly at home and will need be very careful and most likely limit visitors. I hope once flu season is done we will be able to take Cameron out more. Keeping him away from people will be hard especially since I'm ready to go to church and see friends and family. It's okay though, we are just so thankful to be home with Cameron!