I took this pic on Tuesday like 3 hours before everything went crazy......
So... Colton is at Primary Children's Hospital. Something happened on Tuesday although no one is sure of what that something is. I was at my mom's house and trying to clean up after my lunch mess. I put Colton down on my mom's bed so I could sweep and heard him fussing 20 minutes later. Dominic had just been in the room so I hurried into check on him and his face was turned sideways and buried into a blanket. I picked him up and saw that his lips were a little purple... I was nervous but he was crying and breathing and I just decided to watch him, assuming that he was going to perk up quickly. This was not the case. Over the course of about 20 minutes he went from crying and breathing funny to being completely asleep and limp. He continued to breath but it was very labored. Vicki stopped by as I was starting to panic and I called Darin who came right over to look at him. As soon as Darin got to my mom's he told me that something was definitely wrong and we needed to get him to a Dr. I called 911 because I didn't want to put him in the carseat and have something bad happen on the way to the ER. The ambulance came and did not seem overly concerned but thought we ought to transfer him just to make sure everything was okay.
When we arrived at the hospital they were waiting for us! (THIS IS DEFINITELY A BONUS TO COMING VIA AMBULANCE!) The Dr. assessed him and ordered a Chest x-ray. When the x-ray came back it was clear that some fluid was in his lungs. The Dr. assumed this was due to aspiration and told us that it was very serious and that the baby had to go to Primary Children's Hospital via helicopter. At the time he was still working hard to breath but he was successful and his oxygen Saturation was good. We thought the Dr. was being very extreme by insisting that he fly but since we are poor and have no insurance we figured it was just another bill we will never pay. Our biggest concern was when the Dr. suggested that they would intubate him! (This is when they stick a tube down their throat into the trachea, then they "breath" for him with a bag.) The assumption was that he would have to be on a ventilator.
So for everyone who knows me you know that I HATE HOSPITALS!! The number one reason we had Colton at home is because I hate how hospitals do whatever they want, whenever they want to your baby; without any explanation or even permission! The ER at American Fork Hospital proved to be my greatest fear in that regard. So when they said they were life flighting him and that the helicopter wouldn't arrive at AFH for 30 minutes, we decided that Darin would head over there so that he could be there when Colton arrived. The idea was that we would know what was going on with him and that they wouldn't be doing anything to him that we weren't aware of.
When the life flight arrived they decided that they should intubate before they took him up in the air, which turned out to be a 45 minute process. They had a really hard time intubating and it took 2 separate dramatic attempts to get the tube down. They also attempted to put a tube down his throat to empty excess gases from the bag but couldn't get it down there so went through his nose first. After another chest x-ray they determined the tube for intubation was too far in and pulled it out a cm. It was at this time that they noticed there was blood in his mouth.
The life flight story is a mystery to us as we were not permitted to fly with our little guy. Darin did arrive long before Colton but was not even notified when he got here. They took Colton through a back door and told Darin someone would let him know when he got there. What we do know about the flight is that right about the time they were landing they realized that a blood clot had clotted off the breathing tube. They opted to rush him into the PICU and re-intubate there. The first chest x-ray they took when he arrived was COMPLETELY different from the one at the other hospital. His entire lung cavity was FULL of blood. They told us that he was almost dead when he first got there although he NEVER stopped breathing. They gave him some blood (even though he didn't need it and they had no permission to do so). They also got him on a ventilator. When I got to the hospital I threw the shit at the fan! Darin had found out that Colton was indeed there because I insisted that HE HAD TO HAVE BEEN THERE BY NOW! They told him that he had been there for 20-30 minutes but that he was having a hard time and they didn't want the parents in the way. HELLO HE'S OUR BABY NOT YOURS!!!!! Anyway... I got to the hospital and threw a FIT!! It worked! The nurse and Dr. came out to talk to us within seconds and within 5 minutes we were in the room with our little guy.
They had started an IV in his head. This was his second IV, one was started in his hand at the ER. He was on the vent and they proceded to tell us just how sick he is. They decided that the bleeding in his lungs was possibly due to a hemorrhagic disease (problems clotting) although he shows no other sign of bleeding anywhere else. (As the days have passed they seem to be bagging this idea. ) Tuesday night was rough! The vent he was on was just not doing the trick. It was requiring a dangerous amount of pressure to keep up his oxygenation and his ventilation was critical. (Basically he wasn't getting rid of the carbon dioxide his body was making.) They found that he had a Pleural effusion (fluid/air in the space between the chest wall and the lungs) so they placed a chest tube. When they placed it, the shift in pressure in the lung caused a pneumothorax. They also decided to place a central line which was a game of "grind it till you find it!" They struggled to get the needle in the artery in order to place it but it finally got done. It also became necessary to switch him to an Oscillator for ventilation. The normal vent breaths for the patient. They put it on 20 or 40 and that's how many times a minute it forces the patient to breath. The oscillator is completely different. It forces "breathing" 540 times a minute (basically it vibrates his lungs!) keeping the lungs open all the time. In Colton's case it forces the blood to the side of the lungs and the lung absorbs the blood. So he has been on the oscillator and it has done some amazing things for him. We have found that it also means that he is sicker than we would like to admit. But either way it is working and he is improving. Everything lab wise and x-ray wise looks awesome. They've tested him for several diseases that have all come back negative. Now our goal is to let his lungs heal. Only time will tell how long it will be. For now he is still on the oscillator. Once he comes off the oscillator he will go back to a conventional ventilator before he is finally extubated. After extubation he will go to a med/surg floor. All of these things will generally happen in that order but there is no set amount of time that he has to be doing any given step. It's all up to how well he tolerates each step. Right now we are guessing he has a couple more weeks here.
When we arrived at the hospital they were waiting for us! (THIS IS DEFINITELY A BONUS TO COMING VIA AMBULANCE!) The Dr. assessed him and ordered a Chest x-ray. When the x-ray came back it was clear that some fluid was in his lungs. The Dr. assumed this was due to aspiration and told us that it was very serious and that the baby had to go to Primary Children's Hospital via helicopter. At the time he was still working hard to breath but he was successful and his oxygen Saturation was good. We thought the Dr. was being very extreme by insisting that he fly but since we are poor and have no insurance we figured it was just another bill we will never pay. Our biggest concern was when the Dr. suggested that they would intubate him! (This is when they stick a tube down their throat into the trachea, then they "breath" for him with a bag.) The assumption was that he would have to be on a ventilator.
So for everyone who knows me you know that I HATE HOSPITALS!! The number one reason we had Colton at home is because I hate how hospitals do whatever they want, whenever they want to your baby; without any explanation or even permission! The ER at American Fork Hospital proved to be my greatest fear in that regard. So when they said they were life flighting him and that the helicopter wouldn't arrive at AFH for 30 minutes, we decided that Darin would head over there so that he could be there when Colton arrived. The idea was that we would know what was going on with him and that they wouldn't be doing anything to him that we weren't aware of.
When the life flight arrived they decided that they should intubate before they took him up in the air, which turned out to be a 45 minute process. They had a really hard time intubating and it took 2 separate dramatic attempts to get the tube down. They also attempted to put a tube down his throat to empty excess gases from the bag but couldn't get it down there so went through his nose first. After another chest x-ray they determined the tube for intubation was too far in and pulled it out a cm. It was at this time that they noticed there was blood in his mouth.
The life flight story is a mystery to us as we were not permitted to fly with our little guy. Darin did arrive long before Colton but was not even notified when he got here. They took Colton through a back door and told Darin someone would let him know when he got there. What we do know about the flight is that right about the time they were landing they realized that a blood clot had clotted off the breathing tube. They opted to rush him into the PICU and re-intubate there. The first chest x-ray they took when he arrived was COMPLETELY different from the one at the other hospital. His entire lung cavity was FULL of blood. They told us that he was almost dead when he first got there although he NEVER stopped breathing. They gave him some blood (even though he didn't need it and they had no permission to do so). They also got him on a ventilator. When I got to the hospital I threw the shit at the fan! Darin had found out that Colton was indeed there because I insisted that HE HAD TO HAVE BEEN THERE BY NOW! They told him that he had been there for 20-30 minutes but that he was having a hard time and they didn't want the parents in the way. HELLO HE'S OUR BABY NOT YOURS!!!!! Anyway... I got to the hospital and threw a FIT!! It worked! The nurse and Dr. came out to talk to us within seconds and within 5 minutes we were in the room with our little guy.
They had started an IV in his head. This was his second IV, one was started in his hand at the ER. He was on the vent and they proceded to tell us just how sick he is. They decided that the bleeding in his lungs was possibly due to a hemorrhagic disease (problems clotting) although he shows no other sign of bleeding anywhere else. (As the days have passed they seem to be bagging this idea. ) Tuesday night was rough! The vent he was on was just not doing the trick. It was requiring a dangerous amount of pressure to keep up his oxygenation and his ventilation was critical. (Basically he wasn't getting rid of the carbon dioxide his body was making.) They found that he had a Pleural effusion (fluid/air in the space between the chest wall and the lungs) so they placed a chest tube. When they placed it, the shift in pressure in the lung caused a pneumothorax. They also decided to place a central line which was a game of "grind it till you find it!" They struggled to get the needle in the artery in order to place it but it finally got done. It also became necessary to switch him to an Oscillator for ventilation. The normal vent breaths for the patient. They put it on 20 or 40 and that's how many times a minute it forces the patient to breath. The oscillator is completely different. It forces "breathing" 540 times a minute (basically it vibrates his lungs!) keeping the lungs open all the time. In Colton's case it forces the blood to the side of the lungs and the lung absorbs the blood. So he has been on the oscillator and it has done some amazing things for him. We have found that it also means that he is sicker than we would like to admit. But either way it is working and he is improving. Everything lab wise and x-ray wise looks awesome. They've tested him for several diseases that have all come back negative. Now our goal is to let his lungs heal. Only time will tell how long it will be. For now he is still on the oscillator. Once he comes off the oscillator he will go back to a conventional ventilator before he is finally extubated. After extubation he will go to a med/surg floor. All of these things will generally happen in that order but there is no set amount of time that he has to be doing any given step. It's all up to how well he tolerates each step. Right now we are guessing he has a couple more weeks here.
So... the hardest stuff for me:
As long as he is on the oscillator they have to give him a paralytic (so he is paralyzed...) this means that he will not look any better than the lovely pic below until he is off the vent. Once he gets back to a conventional vent he has to AT LEAST be heavily sedated even if they are able to wean him off the paralytic. Basically he will look the same until he's extubated. We look to the labs and x-rays to feel like he is progressing since he still looks like crap!!!
Also.. we can't hold him until he is extubated. NOT FUN!! We just stand by his crib and stare at him, rub his feet, and talk to him. We haven't heard him cry since Tuesday.
Good things!!
The biggest concern long term from this diagnosis and treatment pattern is permanent loss of lung capacity. We are talking a very minor thing. Like oh darn I can't run that marathon cause I was on a vent when I was an infant.
They have done a CT of his head which was normal. They've also done an EEG to test for brain activity and it was normal. They do not worry about brain damage at all. He should be the same little boy when this is all over.
He had an echo of his heart and it is BEAUTIFUL!!!
His labs are awesome!
His chest x-ray went from absolutely horrifying to NORMAL in 22 hours!!
His ventilation labs are NORMAL!!
He is tolerating weaning of the Oscillator incredibly well.
So for all you wondering souls. This is what he looks like right this second and what he will look like until extubation.
It's kind of like a nightmare. One minute he's perfectly normal and 20 minutes later he is fighting for life. It comes on so suddenly but takes weeks to resolve. It's also hard to be this capable adult and be able to do NOTHING for him. He looks so helpless but he is fighting really hard and we couldn't ask for anything more than that!
5 comments:
I'm so happy he is starting to get better. I'll keep sending good thoughts!
Oh, how scary! I'm never good at saying the right thing. I just hope they figure out what went wrong so they can "fix it" and it doesn't happen again. Let me know if I can do anything for you guys. I'll keep praying for all of you.
This just breaks my heart! We are praying for you and that sweet little baby♥
We love you, and hope that everything continues in the right direction. I know Colton will fight, he is yours and Darins so he has stubborn written in his genetics!
I am so sorry for your family and especially Colton. Everything will get better and we look forward to seeing you when you get home. Let me know if you need anything in the mean time- I can cook, clean, watch kids, whatever!
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