One day at a time

We do appreciate prayers as we head into these next few days. And at some point we plan on explaining in alittle more detail how Cameron's last few weeks went. Don't forget to spend time with your children! Love, Jordan and Joy

The Reward

Our precious little Cameron is now Safe In The Arms of Jesus. He went Home to Heaven this morning at 2:15 while his daddy held him and mommy laid right beside them on the hospital bed. We are so thankful his suffering is now over and that he has embraced eternal bliss. Now for those of us still here looking on.... We need the prayers of those we love to continue on as we lay our heads down in this empty, quiet house. And we just hope that his loving smile and short precious life has touched the hearts and lives of many as much as it has ours. 

Thanksgiving Day

This morning in rounds the doctors decided that they probably shouldn't change anything today except lower his sedation drip a tiny bit. To help clear the muddy water about the vent... The tube is out! But they are using the ventilator to give him pressure through a cannula in his nose. The cannula is similar to what he uses at home, just larger. He still has fevers but with around the clock Tylenol it has at least been in check (mostly).  We are so thankful that he has been able to keep the breathing tube out.  

16 Months Old

Today Cameron is sixteen months old, hard to believe.  With Cameron's fevers over the weekend and Monday, the scope of his airway was canceled.  We were disappointed, but the team was afraid to put him under the stress.  His fevers have continued and all new blood cultures are negative.  His "pic" line does have a clot around it, but they say it is pretty common.  They don't think it's the reason for the fevers, but with Cameron it is possible.  They decided to leave the line on rather than putting in a new line.  Over the last couple days they have been going down on the vent settings an this morning at 11am they pulled the breathing tube out.  He did really good and was pretty calm for it, but this time they didn't turn all his sedation off.  He is still actually on the ventilator it is just a non-invasive nasal cannula.  So a lot of support still, but they wanted to take slow steps this time to help hopefully keeping him from needing the tube.  We are so thankful the tube is out and we hope and pray it will stay out.  He really looks so good and is very comfortable so we have high hopes.  

Fevers

Early this morning cameron started having fevers again.   They drew blood cultures and so far they aren't showing anything.   He has had a fever all day and nothing seems to get rid of it,  but we aren't sure he is absorbing what he gets in his j feeding tube because his feeds were backing up into his stomach.  So his feeds were stopped most of the day. They are getting ready to give him IV Tylenol and we are hoping this will bring the fever down.  We are unsure if they will do the scheduled procedure tomorrow morning of if it will need to be postponed a day or two because of the fevers.  

Rough Days

On Thursday,  Cameron got the breathing tube out in the afternoon.  He didn't sound very good because of all the secretions he had in his throat.  Suctioning and coughing wasn't getting it cleared out.  He just didn't sound good and we were afraid he would have to get the tube back in. He dropped his oxygen to the 30s and turned blue not long after got the tube out. He was calm and comfortable so we went to sleep at the Ronald McDonald house. Jordan left for work at 4:30 and at about 5:15 I got the call the the tube was going to be put back in. I called Jordan and he went the rest of the way home and got clothes and turned around and came back.  Cameron was getting worn out and working harder to breathe so they put the tube in because they were afraid he would stop breathing.  It was a very hard day for us with Cameron getting the tube back in.  He is doing better today.  We had been wondering if there was something wrong with his airway and now that he failed getting the breathing tube out and keeping it out they are going to look at his airway. On Monday morning the plan is for Cameron to go to the OR to have his throat looked at.  We are wondering if there is scaring that has been caused from the breathing tube being put in so many times and it is causing him to have a hard time breathing especially when he is sick.  So other then trying to go down on the vent some and getting more extra fluid out of his body, we are hoping for an uneventful weekend.

Progress

Yesterday and today have been better days with some more answers and progress.  Yesterday, they were able to go down on his blood pressure medicine.  His blood culture showed that he has strep A in his blood.  Not normal for a child Cameron's age.  The access line Cameron had was a big concern for blood clots, so they needed to get it out within 24 hours.  We knew though that Cameron still needed IV access most likely for antibiotics and since he is on the ventilator.  With Cameron there are no good options when considering putting a line in and we can't count on just a normal IV because they can really get one an if they do it doesn't last long.  So basically the team knew that they had to pick the least, worst option.  

Cameron had a good night and by 8am this morning  his blood pressure med was turned off and has remained off.  Of course during rounds the big discussion was to decide about the line.  We found out that Cameron would need at least 5-7 days or more of IV antibiotics for the infection (strep A).  This sounds short to us compared to the six weeks for an infection he had before.  Anyway it seemed like the team was going in circles until someone had the idea of putting a "pic" line in his arm. It's not actually a true pic because they cut it short so it wouldn't go to the heart, so a glorified IV.  They increased his diarehtics today to help get more of the extra fluid off his body.  At 10:45ish they took him to the OR for his new line, after quickly getting it organized so they had everyone they needed for the procedure.  The procedure went good and he came out with a good line.  As soon as they got all his Meds going through the new line, the old line was finally taken out. The rest of the day has been pretty quiet, with Cameron being more awake and opening his eyes some.  He is still pretty sedated but every once in a while he wakes up a little.  The hope is to start going down on the ventilator settings and work towards gettin the breathing tube out within the next couple days.

Tough Day

Well, another day has come and gone. No major surprises or excitement today thankfully. Cameron looked worse when we showed up in the morning. Most of the day was spent trying to get low blood  pressure up and heart rate down while keeping enough sedation in him to be comfortable but not too much. He hasn't moved much at all to day which is what we wanted but it can be tough to watch. There was a blood culture taken that is growing bacteria so antibiotics were started immediately although it will take 24-48 hours to see what actually is growing. We are thankful something has been found although not sure what this all means yet. The plan is to just keep him the way he is tonight. He looks pretty tough when you look at where he came from just a few days ago. We can feel the support of those we love and just ask that you would continue to pray for Gods will, whatever that may be. Thanks again, Jordan Joy and Cameron

Uncertainty

Well, to pick up where we left off. Friday wasn't a very good day. Cameron was very discontent most of the day and it got worse as the day went on. He was rolling from side to side in his crib, it didn't matter if he was held, set down, given toys or anything. As the evening went on they tried giving him feeds, shutting off the feeds, Motrin, Tylenol, and finally some Adavan(not sure of the spelling). The Adavan gave some relief and he finally fell asleep at about 2am this morning. Joy had come home Friday night because she had a Tupperware training Saturday and Janice stayed with Cameron. We got our phone call around 4:30 this morning, Cameron quit breathing and they were doing chest compressions to revive him. Obviously we grabbed some things and got in route to Cleveland as quickly as possible. The cops didn't even bother us as we passed him on the way. I told joy if he turns the lights on I'm asking to be escorted. Cameron had lost the IV in his wrist that he had Friday.So unfortunately when this episode started the had to get certain Meds in him very directly. After a few try's to get another IV they had no choice but to put an IV into the bone in his shin. I don't remember the technical terms for all that but... Nonetheless it is a last resort situation we learned. He was successfully put on the ventilator. We later learned the chest compressions only lasted a minute and 45 seconds. Long enough. He had to get the IV out of his bone as soon as possible because of infection dangers if I understood it all correctly. So we left the room and Dr. Stewart went to work. The new line to take the place of the IV would have to be in the upper chest area because they need to leave the veins in his thighs accessible for future catheter procedures. The risk in his chest... they cannot let the blood clot.... or else. So heparin is given to thin the blood. Xray showed the first line ended up in the artery instead of the vein so they had to pull out and go to the other side. It was successful. This evening he is resting, the vent is working and when he starts to stir, he gets a little more sedation. Right now he isn't on a drip, it's just as needed sedation. There isn't much indication of what caused anything or why his breathing has become a little more of a job. The only thing that is certain is that we are not in control. What if we were home when he did this? What if his nurse was not standing at the bedside looking at him when he quit breathing and when the heart quit pumping? We have to take courage that God is in control and we can only do the best we can in/with the situations He puts us in, of course, by His grace. We just plead for your prayers for Cameron, that Gods will be done. And don't forget about his parents, at least speaking for his dad, he can be a lot weaker than he sometimes lets others see. Thanks for all that each and every one of you do on our behalf, Jordan Joy and Cameron

Back in Cleveland

So I'm not doing so good updating the blog unless we are in the hospital.   Well, Cameron got back in the hospital yesterday.  

At home Cameron has been doing good.  He is now starting to sit by himself and army crawling. He is Getting almost anywhere he wants to and I'm getting him untangled from his oxygen tubing.  He loves toys with noise and lights and touchy feely books.  As far as him eating by mouth, some days he does good and other days he won't touch food.  Not sure why this is but hopefully someday he will eat more. 

So Cameron got pink eye Sunday afternoon and I started him eye drops right away and then took him to the Wooster Cleveland clinic branch.  His pink seemed to clear up fast with drops, but Tuesday he was really sleeping and wanted held a lot. During the night he started having some squeaky breathing and breathing a little labored.  Wednesday morning he had puffy eyes and I was pretty sure that we should bring him to Cleveland to at least be looked at.  My mom came with Cameron and I and he got admitted to the PICU for his labored breathing.  

They got an IV in and started IV lasix and also gave him some steroids for his wheezy/squeaky breathing.  They put him on high flow oxygen and stopped his  feeds.  This morning he was up at 4 am crying and fussing because he was hungry.  He couldn't be fed since he was on so much oxygen flow.  I think that is one of the hardest things to go through at the hospital.  Watching Cameron cry cause he is so hungry and not being able to feed him.  Today they worked in going down on his oxygen and started him in a very small amount of feeds around 4/5 o'clock.  He had been so unhappy and restless all day and a couple hours after his feed started, he finally fell asleep.  Jordan came to see us for a short time this evening.  I am sleeping in Cameron's room but hope to get into the Ronald McDonald house, since we will most likely be here all weekend at least.  

Thankful to be Home

We got home yesterday and we are so glad to be home. Cameron is doing good and was excited to be playing with his toys and looking at books. 

Good News! So Thankful!

Cameron's x-ray this morning looked a lot better.  The extra oral diuretics over night did a good job getting rid of a lot of the extra fluid around the lungs. It was decided to continue with the oral diuretics and that he would not have to get a central line put in.  We were so happy that he didn't need the line or need to be put asleep.  He had an echo and the echo showed his heart was functions were about the same as the last echo, which is good.  By afternoon he was doing so much better.  He started eating by mouth for me today after refusing to eat for over a week.  All that extra fluid in his body was keeping him from wanting to eat. We are so happy he drank from his sippy cup and ate baby food.  He was happy too!  

Cameron will get another x-ray done in the morning and depending on how things go, we hope to go home tomorrow.  We will see,  God has a plan and all in his time.  My mom was with us today and yesterday and Jordan came for a visit tonight.  We were so glad to see him.  Cameron cried when he got here because Jordan couldn't hold him fast enough.  He wanting Jordan right when he saw him.  As you can see he snuggled with Jordan and gave him lots of kisses! 

In the Hospital

Cameron had been doing good and was able to get his feeding tube replaced last Tuesday.  The procedure went really good and was a lot simpler than we thought it would be.  Since that he hasn't wanted to eat anything by mouth.  I'm not sure why, but he is getting lots of new teeth now and plus has been fighting a cold still.

Today we had a scheduled apt in Cleveland with cardiology, but yesterday he started getting really puffy eyes all of a sudden.  This morning his one eye was so puffy it was almost shut.  I was pretty sure we would have to stay in the hospital so i packed clothes.  

Cameron got an x-ray and labs when we got here today. The x-ray showed that he has a lot of extra fluid around the lungs and that alone was enough to keep him in the hospital.  He needs IV diuretics to get rid of all that fluid, but after many many pokes he still has no IVs.  We got moved to PICU and the plan is to put him under tomorrow and put in a central line.  While he is asleep they plan on doing an echo and depending on how things look and how he is doing, they might put in a chest tube to get rid of the fluid faster.  We are not sure yet when the procedure will be tomorrow.  

Thanks for your prayers.

Too Long

Sorry it has been so long since I updated.  We have been doing good.  Cameron hasn't stayed in the hospital since June and except for some colds has been healthy. He is getting so big.  He is more active and I don't think it will be long till he is crawling.  He has four teeth with more on the way.  Since he started getting teeth, he likes to show them off and give us big toothy grins.  We are having some trouble with his feeding tube staying in place and it needs be changed as soon as the procedure can be scheduled.  

We have been busy and it is hard to believe today is the last day of September. We are so thankful that Cameron has been doing good and that he has stayed out of the hospital so long.

It's Official

Yesterday, we finalized the adoption in court and Cameron is officially Cameron Benjamin Stoller.  We are so thankful to have the adoption finalized and for Cameron to legally have our last name.  

We had a good weekend visiting Jenny and her kids in Indiana and spending Saturday at the Gateway Woods auction. Cameron is still not totally over his cold, but his body seems to be doing good fighting so far at home.

First Birthday!

Cameron had his first birthday on July 27th.  We have had different family gatherings/birthday parties. My sister, Jenny, and her kids were here a week ago and we were so glad to be able to have them here.

 It is hard to believe that Cameron is one.  This past year has seemed so long, but I still can't believe Cameron is one.  He is growing and changing.  He is now talking even more and making different sounds.  He also just started rolling over and rolls all over the place.  July is the first month of Cameron's life that he hasn't stayed in the hospital at all.  He has been fighting a cold since last Friday and we are hoping and praying he gets over it soon without going in the hospital.  Just last week we got Cameron into a feeding clinic and we are starting to work with him in eating and drinking.  He is doing good and likes both the eat and drink, small amounts.  This is an exciting and big step for him!  

We are so thankful and blessed to have Cameron!  

So Big

I know it has been a while since I last updates our blog.  Cameron has been doing really good and is getting so big. He is now 21 pounds and will have his first birthday next week.  It is hard to believe he is going to be one, but at the same time last July seems like so long ago.  He is starting to show some interest in eating, so soon we hope to go to a feeding clinic and get some help for him with eating.  Cameron started to roll over and is talking more and more.  He rolls over on his tummy and then doesn't like being there and fusses.  He hasn't figured out how to roll back over to his back.  We are working with him on sitting up and he is doing really good with help.  We love him so very much and are so thankful how good he is doing.

Home on Tuesday

We were able to bring Cameron home on Tuesday.  He isn't totally over his cold yet, but it is slowly getting better.  

Colds and Hospital

Cameron got a bad cold and cough on Wednesday after we got home from Indiana.  We went to Cleveland in the morning for blood work and his cold started after that.  By Thursday he was very congested and getting puffy with extra fluid. We came back to Cleveland on Friday and Cameron hot admitted to the hospital.  By then I got the cold too.  They gave him IV diuretics and gave him a little extra oxygen support.  So Jordan and I and Cameron got to celebrate Jordan's first Fathers Day and our 5th wedding anniversary in Cleveland. 

Cameron is doing a lot better, but still pretty stuffed up. I'm not sure yet what the plan is and when we will be able to go home.  

Two Funerals in One Week

On Monday of last week, my uncle Ed (my mom's brother) passed away unexpectedly of a heart attack.  We really wanted to be able to go to the funeral to be with all the family.  They live in Missouri, a 12 hour drive.  We didn't know if we would be able to take Cameron on that long of a trip.  Cameron had doctors appointments  all day on Wednesday and we asked them about taking Cameron on such a long trip.  They were really happy with how he was doing and planned where we should take Cameron if there was an emergency on the trip.  Cameron had gained over a pound in a week, so they adjusted his feed so he wouldn't gain as much so fast.  Two van loads left at 9 pm on Wednesday night.  With Cameron and   Josie two kids, we thought it would be easier to travel at night so the kids could sleep.  The trip went good and we enjoyed being with all the family on Thursday.  On Thursday, at 6 pm we got word that Zach, my brother-in-law, passed away.  One of my sisters and a brother went to be with Jenny and Zach instead of going to Missouri.  We were all praying he could go Home, he was so weary.  At 6pm, Zach took his last breath.  He went peacefully to his Heavenly home.  Jenny, Jacob, and Julie were with him when he took his last breath.  

After the funeral on Friday, we left for Indiana for Zach's funeral. We got there at 2 in the morning and then the viewing was on Saturday.  We were all exhausted emotionally and physically.  On Sunday, the funeral was nice but really hard.  Cameron was doing really good through all our traveling and being away from home. We were so thankful.  Jordan and some others went home on Sunday,  but Josie and I stayed till yesterday with our kids.  We are glad to be home after being gone almost a week.  

Summer Haircut

Cameron got out of the hospital last Friday and is doing good.  His sodium is going to need monitored closely, especially with the hot weather.  It has been a busy week. We helped Javan and Josie move on Monday and Tuesday we had a doctor appointment in Cleveland.  Today Cameron got his hair cut. It is a lot shorter then what we are used to, but we want him to stay cool and all his hair was definitely hot.

Hospital Stay

Cameron was admitted to the PICU in Cleveland on Tuesday for high sodium.  They had changed some medications and sodium the week before and for some reason his sodium level spiked.  His sodium was 164 and 130s is normal. They don't like it to drop too fast, but the next morning it had dropped to 139.  He was acting funny yesterday, but seemed good enough to move to the floor. Right before he was going to be moved he had a scary episode.  He was resting in bed and all of a sudden he became stiff and unresponsive and his heart rate started dropping.  He turned purple and they had to bag him to get him to start breathing.  The doctors thought it was a seizure.  He wast acting normal after it happened and they gave him something to calm him.  They put EEG leads on his head too monitor for seizures, but so far they haven't seen anything they believe to be seizures.  He had done something similar the last time he was admitted to high sodium but it wasn't near as severe as this.  I was really scared since he wasn't acting normal and had no idea what would happen,  I had to try to get the worried thoughts out of my  mind an trust God had a plan. My mom and Jordan came later to be with us and soon after Jordan got here, Cameron smiled at him and started acting more normal.  We were so thankful.

My mom stayed the night in Cameron's room, while Jordan and I got a hotel room and got some sleep.  Cameron had a really good night and has been very happy and acting like himself.  We are waiting for some more results, but he might get moved to step down later today. 

Fun at Home!

We have been doing good, just really busy.  We are still so behind on paperwork and stuff at home from being in the hospital since last July.  

Cameron loves to be at home and is still trying to decide if he likes being outside.  He likes being with his cousins, as long as their not too loud.  Instead of talking in a normal voice, cousin Addy loves to yell if she is happy, sad, excited or mad.  She   has scared him and made him cry more than once. Lol.  Cameron loves to look at books and chew on anything he can get into his mouth.  He is now getting physical therapy once a week and the therapist comes right to our house.  Next week is busy with two days in Cleveland.  Tuesday we go to the feeding clinic and Friday we go to see other specialists.  

Cameron woke up with a fever this morning and hasn't been feeling very good.  Hopefully it is nothing serious and he will soon feel better.