Monday, February 25, 2013

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.


  1. My heart breaks for you...I can read your exhaustion and frustration in this post and I feel for you and have compassion for you. Someone told me once that one of the hardest things a person can go through is the ups and downs of the unknown. Routine is what we thrive on and when everyday brings a new obstacle; it wears on us enotionally, mentally, and physically.
    Please know that we love you all, we are praying for you, and we miss seeing your smile at church. Keep looking up for strength and know that God is carrying you in His hands.

  2. Wow. My heart breaks for your family. I admire your strength and your ability to TRUST HIM during this roller coaster.

    God Bless you and your precious little family.


    (do you mind if I add you to my blog roll so I can keep up on your updates?)