Our Little Man

Cameron was able to get the breathing tube out last Wednesday. It went really good and by the next day he wasn't on any oxygen. On Friday, we were moved out of the PICU to a regular floor. Cameron is up to his full feeds (24ml/hr) and is getting it all through the ng tube right now.

Today the nurses on Cameron's floor are dressed like bumble bees and Cameron likes their antennas bouncing on their heads. We have also seen people dressed like feet with flip flops on and they gave Cameron a really soft monkey. The staff are really trying to brightening up the day for all the kids that are in the hospital and make it special with fun activities. Today, we dressed Cameron up in a cute little shirt and he looks so grown-up.

Tomorrow we are planning on being moved to Cleveland Clinic's Children's Rehab center. It is about 10 minutes away from the hospital. Cameron's doctors think it will be good for Cameron to move there until it is time for the next surgery. The rehab center will do more therapy with Cameron and also work more on getting Him to drink from a bottle. Jordan and I have mixed feelings about the move, but we want what is best for Cameron. I think it is the idea of getting used to a new place and new people, that makes us nervous about it. Once we get used to it, we will hopefully like it.

Six Weeks of Antibiotics

On Monday, Cameron got his broviack/pic line back in for his long term course if antibiotics. He needs to get 6 weeks of antibiotics and we have one week done. During this procedure they also put a catheter into his heart to get good pictures of it. He needed it done for the next surgery. During the procedure his blood pressure dropped and they had to give him blood. He came back from the procedure with the breathing tube in. The doctors were happy with the pictures of his heart and the plan right now is to do the next surgery once the antibiotics are done.

Monday night Cameron wasn't opening his eyes and was moving his arm in a strange position. They were worried what was going on in his brain. They did tests and everything looked fine. To make sure they didn't miss anything, they did an MRI and a spinal tap yesterday. They wanted to make sure there wasn't an infection. So far everything looks good and they are hoping to be able to get the breathing tube out today.

I'm starting to get back into my routine of hospital life. We have been back for two weeks already.

Since being back in the hospital, Cameron found his fingers and decided they are so much better than his pacifier!

Hard Times

At the end of last week, Cameron was doing a lot better. He got moved out of the PICU/ICU on Saturday afternoon and we were hoping to go home early this week. On Sunday afternoon, Cameron was sleeping peacefully in bed and I noticed his heart rate was too high for him when he was sleeping. He then started getting fevers. After he was poked for blood cultures and given Tylenol, he settled down and seemed back to normal. Jordan and I went to get rest that night since Cameron seemed to be doing good. Jordan went back to work in the morning.

Cameron had a bad night. His fever kept coming back and his heart rate going up. When he was awake and upset it would be 190s-200s. The doctors would poke him for blood every time to try to figure out what was going on. From x-rays if his heart, they noticed that his heart was enlarged, but were unsure why and couldn't see enough from the x-ray.

Yesterday afternoon, several doctors came into the room to give me the bad news. Cameron's blood cultures came back positive for an infection in his blood again. That was so hard for me to hear, we were hoping to be going home and now we might be in the hospital for a long time for antibiotics. They needed to get an IV in to give antibiotics, but I figured they wouldn't get on since they already ruined all his good veins. Poor guy has bruises all over his arms and feet. They used ultrasound to get an IV and it stopped working as soon as they started putting the antibiotic in. We were sent back to the PICU to get a central line in. Yesterday was a very long and hard day. I was exhausted and hoped a good nights rest would help me feel better about things.

I rested good, but we got more bad news this morning. Cameron had another positive blood culture for infection. With more then one positive culture, they will now probably need to treat this infection like it is in his heart. Which might mean another 6 weeks of antibiotics in the hospital. They want to try to get a better look at his heart to figure out why it is enlarged. They need to put him under for it, which means the breathing tube needs to go back in. They want to do it today, but I'm still waiting to hear if they are doing it today. We are also waiting to hear the plan of action for sure.

I know God is in control and has a plan in all this, but it is hard in times like this to remember that.


(Cameron still has some smiles for us when he feels better)

Back in the Hospital

Since we got home, Cameron has gotten a cold. We thought he was getting over it on Monday, but on Monday night he started being very restless and breathing very fast. We took him to his pediatrician in Wooster on Tuesday and then had a follow-up appointment with him this morning. Today the doctor and my mom and I noticed Cameron seemed to be working even harder to breath. The docs talked and decided we needed to head to Cleveland. After being seen by many of Cameron's specialist doctors, he was admitted to the hospital and we are back in the PICU. In the same room as before. They want to keep a close eye on him and see if they can figure out what is going on and help him get to doing better. No one is sure how long we will need to be here. It is really hard to be back so soon and see him upset with being poked by everyone. He was poked over and over before they finally got a good IV in. On top of that he isn't aloud to eat because he is on high flow warm air to help is breathing and congestion. He is exhausted, but so restless because he is so hungry.

We hope that within the next few days Cameron will be back to himself and we will be able to go back home. Thanks for the prayers!

Home at Last!

Just a quick update... We got home on Monday afternoon! We are so glad to be home together as a family.