Thursday, October 15, 2009
Colin's Journey 4/09-10/09
I didn't get the chance to keep up daily as we were going through this with Colin, so I decided to start a blog so people can see exactly how things have been going over the past few months. I apologize for sometimes not keeping family and friends in the loop, but you know, when things like this happen you do the best that you can.
Colin was born on April 2nd 2008. He was diagnosed with Congenital Diaphragmatic Hernia right after birth. When he was born, the doctors and us had no idea what was going on. They couldn't get to him breath. After a few minutes of him getting more and more blue, they decided to put a breathing tube in him. Soon after, he was rushed off to the NICU (Neonatal Intensive Care Unit). There, they hooked him up to life support. They took an x-ray of his chest to see what they could find. In the x-ray they found that his diaphragm did not close all the way so his intestines and part of his liver had migrated up into his chest cavity, blocking his right lung from forming all the way.
I was able to get wheeled into the NICU to be next to him. I was only able to hold his hand.
Kaiser didn't tell us too much about his condition other than his intestines had moved up into his chest cavity. I was told that he was going to need surgery to get everything put back in the right place and to have the hole patched up. I had never heard of this condition in my life and at this point had no idea what to expect or think. Soon after, he was rushed "Code 3" to the University of San Francisco for further treatment and analysis. Luckily, I was able to get transported to UCSF to recover from the C-section and be there with Colin. I never even saw him that night. I was wheeled into my hospital room around 9 that night, and was told to try to get some rest. I obviously wasn't able to sleep at all that night. It wasn't until the next morning that I was fully able to talk to a doctor about what was going on.
The next morning my parents were there first thing in he morning to come visit me and see baby Colin. They wheeled me up in my wheelchair and I was able to get a good look at him for the first time since he was born. He was hooked up to all kinds of machines. He was on a respirator (life support) and was in a medically induced coma to keep in calm while he had his breathing tube in. A doctor stopped by to explain more about the condition and the situation and we were informed that he had a 50% chance of survival. Their goal was to wait until Colin was "critically stable" and at that point they would be able to do the repair surgery. I was also told that this was going to be a long and tedious process, and to plan on him being in the NICU for at least a month. The doctor did not sugar coat anything for us, because we needed to realize the reality of the situation. At first this was a little bit too much for me to bare, and for the first couple of days, going up to see him was very tough and I couldn't do it without crying when I looked at him.
It's the Sunday after Colin was born. The hospital was ready to discharge me on this day. I wanted to go home because I wanted to get out of the hospital and sleep in my own bed, but at the same time, I wanted to stay there because I didn't want to leave my baby. I ended up leaving at about 8 o'clock that night, and this was probably one of the hardest things that I have ever had to do. It is the hardest thing in the world to leave the hospital after having a baby, and not leaving with them. My friends were there to greet me as I was leaving the hospital, and they brought us food. I wasn't too much in the mood for it though.
On Monday morning, I received a call from the resident surgeon who was working on Colin's case. They said that over the past 4 days, that Colin had remained at his "critically stable" state and they were able to ween him down on his oxygen enough that they felt comfortable doing surgery on him. The ideal situation would have been to take him down to the OR and do the surgery there, but they were too concerned about the transport affecting him too much, so they had to do the surgery right there in the NICU. We rushed to the hospital to be there while he was in surgery and so we could see him when he got out.
3 hours later, they came into the waiting room and told us that the surgery had gone well. We were able to see him. He was on a morphine drip and was still on his paralyzing drugs until he had a few more hours behind him post surgery.
Over the next couple of weeks they were able to slowly let him wake up. First he was able to slowly move his toes, then his little hands would move.
Eventually after about 2 1/2 weeks, he slowly started to open his eyes. This was the best thing in the world for me to see as a mom. I still hasn't held him yet, and to finally see those eyes warmed my heart. Soon after that I was also able to hold him for the very first time after two weeks! That was a huge highlight for me. He eventually was able to get his breathing tube removed and replaced with a CPAP device. This device doesn't actually breath for you like the tube does, but it gives little spurts of pressure every few seconds to help him along a little bit. Once the tube was out, he was able to be taken off of IV fluid feeds and start to see how he would handle feeds. He wasn't taking enough from the bottle, so they had to put an NG tube (nasal gastric tube) in. This is a tube that goes into your nose, down your throat, and into your stomach. He didn't like this very much, but it was the only way we could get feeds down him.
After only a few days on the CPAP machine, he was able to get bumped down to a "high flow" nasel cannula. This is a breathing normal breathing device, that does not give any extra support as far as pressure, but it does give a high flow of oxygen to sustain him. They waited and watched to see how he did on this, and he seemed to do very well. Needless to say, he was much happier to not have the huge "snorkel device" strapped to his head.
He spent a total of 3 weeks at UCSF when they decided that he was stable enough to get transferred back to Kaiser Walnut Creek for further care. He wasn't able to come home yet, but at least back to Kaiser was one more step closer to come home.
During his time with Kaiser, the nurses and doctors worked on weening him off of his oxygen. He was at a pretty low setting, but still needed that extra support. Their goal was to send him home on no oxygen at all, but if they had to send him home on oxygen they would.
They also worked with him on eating. It is a very long and tedious road to getting them eating normally. The main hold up of Colin coming home was the fact that he was not eating enough of his feeds by mouth for them to feel comfortable sending him home until he ate at least half of the bottles by mouth.
At exactly 6 weeks after birth, I got a phone call from Kaiser saying that they think Colin might have re herniated. Over night he had been consistently throwing up green bile which means that there was a problem. They took an x-ray of his chest, and they said that it looked very much so like a re herniation. They also sent it over to the operating surgeons at UCSF and they were concerned enough about what the pictures looked like that they wanted him sent back to them to get a better idea. I was able to get down to the hospital fast enough and had a few minutes with him before AMR took him back to UCSF. I drove down to the city, and Tim met me there.
After a few hours of waiting and some more x-rays, they said that he did in fact re herniate and they were wanting to do the surgery the next day to do a second repair.
After surgery, they explained to us that he had a partial bowl obstruction along with the re herniation. He ended up losing a lot of blood during the surgery, so he had to have a blood transfusion during surgery. They were not able to find a vein in any of his arms for the procedure, so were forced to place one in one of the veins on his head. They didn't want to lose the one that they already had in his head for fluids, so they placed yet another one on the other side of his head. It looked like he had little horns.
He progressed very quickly and he was able to get his breathing tube out and put back onto the nasel cannula right away which was good news. He spent another couple of weeks , and he got transferred to a different ward in the NICU that has a little bit less care.
On his 2-month birthday he was able to come home. He was going to be sent home on oxygen and with a feeding tube. I had to stay overnight for two nights to show the doctors and nurses that I was going to be able to take care of Colin at home with all of his special needs. I didn't care what I had to do, as long as we were able to take him home. This was probably on par with one of the happiest days of our lives the day that we finally were able to take him home.
He spent two months at home and things were going very well. We had tons of doctor appointments. We were seeing a pulminologist for his lungs, a physical therapist for his eating issues, and his regular pediatrician. We were also going to monthly clinics to track his progress at UCSF. He was making pretty good progress with everything except his feedings. He still had the feeding tube in his nose, so we were still able to get his food down him, but it was a very slow process.
His brother loved him and it seemed to help Colin by being out of the hospital and have his brother playing with him and just being with his family. This was definately a good time.6-2-09:
By August (4 months), he was not making any new progress with feedings, and we were reaching the end of our time with the NG tube. He was also getting strong enough that he was pulling the tube right out of his mouth all the time and even during feedings, which can be fatal if any fluid gets into their lungs. So we started the preparations for him to have another surgery to get a more perminant g-tube (a tube that goes straight from his belly into his stomach).
It took a while to get the schedule done, so for about a month, we had to watch his tube and make sure that he didn't pull it out during feeds. On August 4th, we took him in that morning for surgery.
He recovered from his stomach tube surgery and was doing quite well! He was slowly starting to not need oxygen anymore. By the time he left the hospital after a week, he was off of oxygen 12 hours a day.
He seemed to be a lot more comfortable not having a tube coming out of his nose and he was eating up to 2 ounces a day by mouth. Definitely not enough to not need a feeding tube, but at least we were getting somewhere.
It had been about 3 weeks post surgery and every time Colin ate, he seemed to be in a substantial amount of pain. His stomach seemed really distended, and comfortable every time he ate. At first, the discomfort only lasted for a couple of minutes before he passed the food through, but as time went on, the periods of discomfort seemed to get longer and longer until it got to the point where he was constantly in pain.
I immediately took him to the ER at Kaiser Walnut Creek. They did a dye study on him to make sure that he was passing his food through his intestines and to make sure that there was not another bowl obstruction. They could not find out what the problem was, but there was obviously a problem so he was sent back to UCSF for observation. There, he was taken off of feeds and given IV fluid feeds again.
Colin was there for only about 4 days after letting his bowls rest. He was handling feeds well again, so they thought that he just needed a break from food for a while. They told us that we needed to let air pass through the tube so air doesn't add up in the stomach.
He had only been home for 1 week and a half when the discomfort started again. I called the nurse practitioner who I talk to all the time at UCSF, and she said if things do not get better overnight with the things she was telling me to do, than they wanted to see him at the ER at UCSF.
Things didn't get better overnight, so I took him in first thing in the morning. They admitted him, did an extended dye study and still were not able to find anything or where the problem could be. They made the decision to open him up and do an exploratory surgery and find where the problem was and what was going on.
I ended up going home right when he went into surgery because I couldn't stand being at the hospital anymore. I went home and waited for the phone call from the doctors to find out what the problem was. 5 hours later we got the phone call. The doctor said that there was so much scar tissue all over his small intestine that it looked "ugly". There were three sections of his small intestines that had died over the last few surgeries. 30% of his small intestine had to be removed in 3 different sections.
After surgery, he didn't seem to do very well. He got really sick and ended up spiking a very high fever, his white blood cell count was high and ended up with an infection in his blood somehow so he had to have another blood transfusion. His body's ability to clot was not working either, so he had to have two plasma transfusions. It was very touch and go for the first 3 days after surgery, but he seemed to start to pick up after the 4th day. He continued to have a high white blood cell count for the 2 and a half weeks he stayed in the hospital, but they decided to discharge him anyway. I had to do follow up appointments with the doctor to make sure that his white blood cell count was coming down and it did.
Ever since then he has been doing great! It seems like this last surgery is just what he needed! We are still currently working with him on eating. We are going to a specialist on swallowing and other eating issues so hopefully in time that will start to help.