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!

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.