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.