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.