Tough News

I got sick on Friday and was finally starting to feel better yesterday, but decided to stay away from Cameron until today. My mom came and was with Cameron Friday and Saturday. She was a big help. Jordan and Julie spent time with Cameron yesterday and we were supposed to go home today. Yesterday, Cameron started breathing hard and they did a chest x-ray and culture to see what was going on in his body. His chest x-ray showed that his left diaphragm is pushing up into the lung and not working very good. Just hearing that, we knew we weren't going to be taking Cameron home for Christmas. They also did an ultrasound. We needed to wait until this morning when Cameron's surgeon and doctors before knowing what they thought and what needed to be done. The surgeon, is not sure what happened because he said that he wasn't even near it during that last surgery. He said Cameron needs surgery to fix the problem. He will go in with an incision in his side and then put some stitches in the diaphragm to keep it from pushing into the lung. The plan was to do surgery on Wednesday, but the culture came back positive for a respiratory virus so surgery will have to wait. Lots of disappointments, but God is still in control.

Preparing to Go Home

We have had some ups and downs this past week, but through it all Cameron has made good progress. On Tuesday, Cameron was taken off high flow oxygen and put on a low flow/normal oxygen. He has been doing pretty good on it and they have been able to go down on the oxygen some. Cameron's last echo showed that his heart functions looked really good with a lot of improvements between this echo and the last. Yesterday, Cameron got his pic line out and he was moved out of PICU to step down. We are so thankful Cameron is doing so good now. Today Cameron got switched to a normal ng tube for feeds and also on bolus feeds every 3 hours. He has handled the change pretty good. The doctors and nurses are getting everything together so we they say we can go, so we don't have to wait on prescriptions and stuff. We have oxygen set up for at home coming tomorrow because he will probably need to be on oxygen at home for at least a little while. If all goes as planned we hope to be able to take Cameron home for Christmas, Sunday or Monday. We will see' only God knows what is ahead. Thanks much for all the prayers!

Recovery

Last Friday, Cameron had another echo and it was about the same as the last one. They decided to go up on his heart medication and give him a couple more days to get stronger before pulling the breathing tube out again. Everyone decided it was best to go slow than to risk another set back. They started feeding Cameron some while the breathing tube was still in. Cameron started doing better and on Sunday they took the breathing tube out and he did really good. They kept him on the ventilator, but with a special cannula in his nose. I got the hold Cameron for the first time on Sunday after the tube was out. It is so good to get hold my baby again. Cameron's feeds had to get stopped when he got the breathing tube out and yesterday the put a special ng tube in and started feeding him. Yesterday he was taken totally off the vent and put on high flow oxygen. They are going down slowly on the oxygen and is on 3 litters. Once he goes down to two litters of oxygen, he can be taken off high flow to a normal oxygen setup. Cameron is also getting more feeds today, which makes him a happier boy.

As far as us taking Cameron home, we are taking it one day at a time. I have asked a couple of Cameron's doctors if they think it is possible for us to have Cameron home for Christmas and they said they think it is. They said to not give up hope. This year for Christmas, the best gift for Jordan and I would be to have our son home for Christmas! God has a perfect plan for us and that's what we want.

Last week I went home Thursday night and for part of Friday. Jordan had his work Christmas, so I got to go with him to it. I was with family and spent some time Beth, Malachi and Melea and also Josie and Adelynn. Zion and Moriah in Ohio now while Zach and Jenny are in Hati. Today my mom, Josie, Adelynn, Zion, Moriah and I spent time together in Cleveland and went to the Botanical Gardens. The kids really liked the butterflies and the train ride.

Slow Progress

On Monday, Cameron gave me a scare. The respiratory therapist was suctioning his breathing tube out and he got really upset. He ended up holding his breath, turning purple and then passing out. He was fine, just really scared his mom. My mom came later in the day and stayed in Cleveland with us. On Tuesday morning, they thought Cameron was ready to get the breathing tube out. When they tried he lasted about 2 minutes and stopped breathing. They had to do compressions on him and give him several doses of epi before having to put the breathing tube back in. Everyone was so disappointed that Cameron had to get the tube right back in. After this episode, he was the most awake I had seen him since surgery. He was content and looking around and looked like he wanted to smile at us. Josie and Adelynn came to visit and then Josie spent more time with me and my mom took Adelynn home. They did a echo and ultrasound to make sure that everything looked okay with his heart and also to make sure his diaphragm was working. The ultrasound showed that the diaphragm was good, but the echo showed that the heart's right ventricle's function was not as good as it was before the surgery. They are thinking that it was caused from the compressions and problems he had that morning. Last night my mom came back and I spent the night in Cameron's room because they were going to get him off some sedation in case they decided to try to take the tube out in the morning. I wanted to stay close because Cameron calms down for me. Right now the plan is to let him relax and grow stronger the next couple days. They started him on a slow continues feed today, also On Friday, they plan on doing another echo and seeing how his heart looks. Depending on the echo the hope to get the breathing tube out Friday or sometime this weekend. Cameron is having a good day today, he now has both the chest tubes out and his incision seems to be healing well.

God's Time

Cameron has had some ups and downs since surgery on Friday. On Saturday, Cameron needed a blood infusion. He was pretty swollen in his face and some all over his body, but nothing like the first surgery. In the afternoon, he got the breathing tube out and was doing pretty good. He was breathing pretty hard, but they hoped that would get better with sometime. Cameron was doing good when Jordan left for the night, but we knew it was possible the breathing tube would need to go back in. At 4am on Sunday morning, Cameron spiked a fever and his oxygen saturation dropped. He was having a really hard time breathing, so he had to get the breathing tube back in. They got blood cultures to check to make sure there was no infections. They hoped he got a fever just from surgery and being bundled too much. Even though he had to get the breathing tube in, he seemed to be doing good on Sunday. His swelling had gone down a lot and he looks more like himself. They wanted to let him get all rested up to take the tube out in a day or so. He has been kept mostly sedated so he wont be uncomfortable. Today Cameron's x-ray showed fluid in his chest that his one chest tube hasn't gotten out yet. They put a smaller chest tube in to try to get the fluid out. So far the blood cultures are negative for an infection. Right now Cameron is getting more blood since his blood levels are a little low. One thing after the other, but overall Cameron is doing pretty good. The doctors are hoping to try to get the breathing tube out later today or tomorrow.

I just need to keep reminding myself that God has a special plan and all in His time. We are so ready to take Cameron home, but only God knows when it will be the right time.

Praise God

Cameron's surgery went really good today. We are very thankful. The doctors are very happy with how it went and how Cameron is doing. They are hoping to try to take the breathing tube out tonight or tomorrow, most likely tomorrow. We hope and pray he can get it out soon and it can stay out.

Thanks for your prayers!

God Knows Best!

Cameron has been doing really good. He has been full of smiles and he likes to talk to us. The plan is to move forward with surgery tomorrow. The doctors hope to start the surgery between 8-10:30am. Most likely the surgery will take most of the day. We are hoping and praying all goes well and Cameron has a quick recovery. They said normally it take 2 weeks, sometimes less for recovery after this surgery. Most of all we are praying that God's Will will be done, He knows best.

Thanks so much for your prayers!

Thankful!

Cameron's blood cultures and other tests all came back negative. We are so thankful that he is getting over the flu and blood infection. Cameron should be able to have his surgery still on the 30th as long as he continues to do good this next week. He is still in oxygen, but will probably need it until his surgery. Cameron is gaining weight and is now over 11 pounds. The more he gains between now and the surgery the better.

Surgery Nov. 30th

For the past ten days, we have been fighting the influenza and trying to all get better. I'm feeling a lot better, but not 100% yet. Cameron was doing a lot better and then yesterday he had a fever and his nose was more stuffy again. They did some blood cultures and tests to make sure no more problems have developed. We are waiting for those results back and we are hoping and praying everything looks good. Today he seems to be feeling a lot better and I hope to try to bottle feed him today for the first time since we have been back in hospital. On Monday, Cameron's broviack line for his antibiotics stopped working. They did an x-ray and discovered that the line was no longer in the right spot. Cameron still needs one antibiotic until the surgery, so on Tuesday he went to the cath lab to get the old line removed and put a new line is his groin/leg. I was really nervous about it because it seems like every time he goes to the cath lab something bad happens. The procedure went really good and he was able to get the breathing tube out while he was still in the cath lab. Cameron is slowly gaining more weight. He also started cooing and talking a lot more this week. On Monday, Cameron got a new cousin. My brother Jacob and sister-in-law Beth had a baby girl, Melea Rose. She was born on Jordan's birthday and they took her home yesterday.

Cameron's second surgery has been scheduled for November 30th. We are hoping that the flu is all cleared up by then, so the surgery doesn't have to be postponed. As long as the surgery is the 30th and the surgery goes good, the doctors are hoping to get us home for Christmas.

Sick Again

Cameron was moved to the rehab hospital on Thursday, but we were only there a couple days. When I got to Cameron's room Saturday morning, he was on oxygen because he oxygen level was low. He was stuffed up and coughing. A PICU doctor that knows Cameron was there to see what was going on with him. Soon it was decided we needed to get transported back to the main hospital. When at the main, they swabbed his nose and soon found out he had the worst influenza. We were told that it will probably get worse before it gets better and that sometimes this flu takes a long time to get over.

Yesterday Cameron had a pretty good day, but has been pretty miserable today. He has been more stuffed up and has needed a lot more oxygen. Now I am sick also and Jordan is starting to get sick. We are hoping and praying that we will all soon get over this.

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.

Count Down!

We are counting down the days till we can take Cameron home. A week from today, they plan on taking Cameron's pic line out and finishing the last couple days of antibiotics with an IV. If all goes as planned, we hope to go home Monday, October 1st!

Cameron has been doing good. The doctors are very happy with how he is doing and wish they could send us home sooner. Cameron is still having a hard time with feeds. He doesn't like drinking from a bottle very much. They have changed him from donor breast milk to the formula, so he is trying to get used to a different taste now and that doesn't help. What he doesn't drink goes through his NG feeding tube. Cameron also has a hard time keeping his food down, but he is still gaining weight. He is now over 9 pounds.

Yesterday was the first time I was able to take Cameron on a short walk around the hospital!

Keep On, Keeping On

Cameron has been doing good. We are very thankful. Sunday was the last day that he got methadone for withdrawal symptoms and so far he has been doing pretty good and hasn't needed any more. Cameron is still working at drinking from a bottle. It is a very slow process, he would much rather have it put down his NG feeding tube. I just need to keep being patient and keep working with him. Cameron is now off oxygen, which has been a slow process to get him here. We were so glad to see that go. The last day of Cameron's antibiotics is on September 29th. We hope to go home a couple days after that if all goes good. We can't wait to take our son home!

Last Friday was a big day for us. We have been waiting to sign adoption placement papers ever since Cameron was born. On Friday, we signed papers and we finally have legal custody of Cameron! Ohio adoptions take 6 months to finalize.

The doctors and nurses are starting to teach us how to care for Cameron at home. They want to get us all ready so when the antibiotics are done, we are all ready to go home. There is a check list of things we need to know and be able to do, so we can go home. We are so ready to be home.

First Time for Bottle!

 

 

Yesterday was the first time that Cameron got fed with a bottle!  I loved being able to finally feed him.  He liked it, but all the hard work wore him out.  He was soon sound asleep.

Step Down Unit!

I know it is past due for an update. I have been a busy mom. Monday afternoon, Cameron got moved out of the PICU to the step down unit! We were so excited, but also nervous about what it would be like. We knew the PICU had the best care and knew that Cameron wouldn't get as much one on one in the step down. Moving brought good change and more progress. We can now help with most of Cameron's care and can get him out of bed when we want to and without the nurses help. I love being able to actually being able to take care of him. I am planning on staying with him a lot at night or at least part of the night. Cameron shares a room right now with another baby, which makes things hard. Even if Cameron is sleeping, I can't always sleep because the other baby is crying. Yesterday, Cameron started on bolus feeds, which is a feed given over 30 min. Instead of having a small amount of milk going in his tube all the time, he gets a bolus feed every three hours. I also got to feed him with a bottle for the first time! He did really good and drank 8 ml. Only a small amount, but it wore him since it was the first time and he needs to learn how to drink. With the rest of the milk, they do it as a bolus feed. I have been trying to feed him a bottle every other feed and each feed he has drank more through the bottle. At his 4am feed, he drank 20ml.

We are so thankful for all the progress Cameron is making. He still has a ways to go and still has about three and a half weeks on his antibiotics.

Daddy and Cameron

Cameron has been doing really good. He is now getting tube fed again, which makes him so much happier. He is back on full feeds of 20ml/hr and the TPN(IV nutrition) is turned off. Cameron is also on very low oxygen. He was going to get moved to the step down unit today, but throughout the night and early this morning he was having withdraw symptoms from morphine again. They want to keep him in PICU yet to try to see how he does today and figure out the best way to help him. He had been having a good day. He loves being held.

Good Days and Bad Days!

Since I last posted, a lot has happened. On Saturday, I went home to go to a family picnic and Jordan's work picnic. It felt really strange stepping into our house. It didn't seem right to be home without Cameron. By the time we got to Jordan's work picnic, all I wanted to do was get back to Cameron. I could hardly enjoy myself. It wasn't that I was worried about him, my mom and aunt were with him, I just missed him. By the time we got back, Cameron had gotten the breathing tube out. We were so glad and I was happy to be back. I didn't think it was going to be so hard to be away.

On Sunday, Cameron had a good day. They were able to lower his oxygen and also his TPN (IV feeds). By the end of the day his TPN was turned off and his tube feeds of milk were up to 20ml/hr. We also found out that they for sure wanted Cameron on 6 weeks of antibiotics and that he had five weeks to go. We were so excited about his good day and hoped he would moved to step down in a couple days.

When I got to Cameron's room on Monday morning, they were watching his heart closely. His heart rhythm was starting to look irregular. By late morning he had a heart flutter. The top of his heart was beating faster than the bottom. The doctors decided that they needed to shock his heart to restart it. To do this, they wanted him asleep so they had to put the breathing tube back in. I had a really hard time with this, we were so close and this had to happen. Jordan came while they were working on Cameron, I was so glad to see him. By now I was really struggling. He reminded me that God has a purpose for this to happen.

When we got to see Cameron again, the doctors said it went good. The breathing tube was in and when they shocked the heart it returned to normal rhythm. The doctor said that they hoped it was a one time thing, but that if it happened again it could be the new line causing it. The new line is right by the heart and it could tickle it and cause the irregular rhythm. The doctor also said if Cameron did good over night they wanting to take the breathing tube back out.

Cameron's night was good and so at 11:15 this morning he got the breathing tube out. So far he is doing good. I plan to go home in a couple hours for or baby shower.

Four Weeks Old!

Today Cameron is 4 weeks old. We had a good day. Cameron got a new line put in, the procedure went as planned. This is the long term line that he will get his 6 weeks of antibiotics through and any other things he stilld needs.  He did get put back on the ventilator for the procedure, but they hope to be able to remove it in the morning.  If all goes well in the morning, I hope to go home and go to a family picnic with Jordan and also go to Jordan's work picnic. 

Three Weeks after Surgery

Today has brought some more progress. Cameron had been handling his tube feeds, so they have been able to slowly increase the amount he is getting. He has been getting TPN, nutrition through an IV, with the increase of feeds they can decrease the TPN. The doctors have also been trying to decrease his oxygen he is on, but it has been a very slow process. Today they were able to make a change to high flow oxygen. So far he seems be handling the change well.

On Friday, they hope to put a PIC line in and it will replace his IV line. The PIC line will be the long term line for his 6 weeks of antibiotics. We are still learning about this procedure on Friday, but most likely he will need to be put back on the ventilator (breathing tube). The hope is that once he is awake again after the procedure that the breathing tube will be able to come right back out.

Thanks for your prayers and support!

One Day at a Time!

Cameron has been having a good day. They started him on NG tube feeds of donor breast milk , but only a very small amount. Cameron is still on oxygen. Once he is able to get off oxygen, he should be able to be moved out of the PICU to a step down unit. Since he got the infection, they want to start him on PIC line antibiotics for 6 weeks. Now, most likely this will mean that Cameron will be in the hospital 6 more weeks. Six more weeks in the hospital, that was really hard for Jordan and I to hear. We want to take our son home. As I say over and over, we just need to take it one day at a time. God is in control and has a perfect plan for our family. Jordan and I are so thankful for Cameron and feel very blessed to have him.

Three weeks old!

Today Cameron is 3 weeks old, it seems like we have known him for longer. On Wednesday night, his temperature spiked and his heart rate went up. They got cultures to see if there was an infection. They started him on antibiotics right away. This morning they found infection in both his A line and central line. They need to put knew IV lines in so that they get remove the infected ones. We just hope and pray that the infection will go away soon and not cause an more problems.

Recovery for Cameron is like a roller coaster. He is climbing and making progress one minute and the next he is going down hill and backtracking. The doctors say this is very normal. It really is a day by day journey.

Isn't He Cute!

Two Weeks After Surgery

Wow! Two weeks ago Cameron had his open heart surgery. Time seems to be going so fast when I think back over these last couple weeks. Even though July 27th seems like so long ago. I have not been home since July 26th and miss being there. I don't want to be an hour away from Cameron though, so I just stay. Each night as I lay in bed, the city noise never ends. Sirens seems to be sounding all the time, specially when I am trying to sleep! Lol As much as I miss the open farm land and just being home, I am content and want to go home when Jordan and I can take our son home.

Right now I am holding Cameron in my arms. Since he got the breathing tube out, we have been able to hold him everyday! He is such a sweet little boy. Cameron is having a good day and is very happy in his mommy's arms.

Good Progress

Cameron is doing very good. Yesterday Cameron was able to get off the ventilator. He is now breathing on his own with only a little encouragement of some oxygen. The next step is to get him off the oxygen completely. Today, Jordan and I were able to hold him, the last time being on July 29th!

Pictures with Cameron

This is when our family came to see Cameron for the first time!