Kasen - Lobectomy at 5 months in Edmonton, Canada

by Jessica, mom

March 14th 2011- Birthday

The moment you finally get to meet the baby who has been growing inside of you for 9 months is so magical. It has to be one of the best feelings in the world, when after so much anticipation you get to hold your baby in your arms. I don't think you truly know how much you can love another human being until you hold your baby for the first time, and from that moment you know that there is not a single thing you wouldn't do for that child. So far I have been lucky enough to get to experience this amazing feeling twice.  One of those days was on March 14th 2011, when I met my second born, Kasen.

"It's a boy!" yelled out the nurse, but it wasn't a surprise, since 19 weeks ago we had found out it was a boy on our 20 week ultrasound. But it was nice to finally know for sure. They placed him on my chest almost immediately and he let out a tiny cry. The doctor joked around, saying what a big boy he was and he must be at least 9lbs, so they took him to be weighed and cleaned off. Kasen was 8 lbs 4oz, exactly 2lbs more than his big sister did when she was born. He seemed to be a perfectly healthy baby.

June 20th 2011- A Trip to the hospital

Every once and a while Kasen had a slight wheeze while breathing but I never thought anything of it 'til the first time he caught a cold. This cold seemed to have hit him hard, causing him to have trouble breathing every once and a while. He was so congested that every time he took a breath it sounded like a cat was purring. I joked with him that he was my little kitty. Even though he had this terrible cold he was still his normal happy self.

On June 20^th 2011, his cold caused him to stop breathing a few times, so I decided to take him to the hospital. After being seen by a nurse, we were sent into a room they call “Fast Track”. It’s a room where they get people in and out fairly quickly because it’s nothing too serious. This made me very relieved. After hours of waiting in this so called “Fast Track” room we finally got to see a doctor. He suggested we try Kasen on an inhaler and keep him for an hour and see how he does and also for him to get an x-ray just to be safe.

Kasen was given an inhaler and it seemed to have helped him breathe normally. Then we went for the x-ray, which was painful to watch. If you have ever seen a baby get an x-ray you will know why it was so hard for me to watch. The sit them on what looks like a bicycle seat, raise their arms over their heads, and put a tube around them and strap them in so they can’t move. Then everyone has to leave the room and watch through a glass window. The x-ray took about 2 minutes but it seemed like he was stuck in there forever. After the x-ray we headed back to the room to see the doctor and find out what he had to say. He said that he was not sure about the x-ray so he was going to have it looked over by another doctor who would know better.

Later on that night the ER doctor told us that he thought Kasen had Congenital Lobar Emphysema and would need a CT scan to be sure. I was devastated that my poor baby would need to get an IV and be sedated in order for them to do the CT scan. I was such a mess that a nurse had to take Kasen for a few minutes so I could pull myself together. He and I cried as they tried to get an IV in his arm, but he was so small it was hard for them to find a spot to put it. Finally they got it in and now we would wait for the call to go down to get the CT scan.

When we got to the CT scan they put the medicine through his IV to put him to sleep but he fought it. He didn’t want to go to sleep; he whined and tried his hardest to fight it. They ended up having to give him more to get him to sleep. We were told in about 30 minutes he would wake up and someone would look over his CT scan and come let us know.

Kasen fast asleep after his CT Scan.

An hour went by and Kasen was still fast asleep.  I just wanted him to wake up so I would know he was ok. Then a lady came into the hospital with what I think was a broken leg and she was hysterical and screaming at the top of her lungs. It startled Kasen and he finally woke up.  Never in my life had I been so thankful that my baby woke up! But they had him hooked up to so many wires that I couldn’t figure out how to pick him up. So I unhooked him from some of the monitors so I could pick him up.

The ER doctor came back and told us that yes Kasen did have Congenital Lobar Emphysema and we would need to go to the children’s hospital 4 hours away as soon as possible to see a specialist. Since Kasen was stable, we were able to go home for the night and were told to be back at the hospital at 10am to meet with the pediatrician.

We left the hospital only knowing one thing and that was that our son had something called Congenital Lobar Emphysema. We had no idea what it was or what it meant so I went online to do some research. This only led me to be even more confused by this diagnosis. How did my 3 month old get a disease that smokers get? How did this happen and what was going to happen to my baby? I had so many questions that I just could not find online. That night I didn’t sleep more than 5 minutes at a time. I would wake up crying and shaking from a terrible nightmare of losing Kasen. That day was one of the worst days of my life.

June 21^st 2011- Some relief and answers

After a rough night with no sleep we were all up and ready to meet with the pediatrician. We met with Dr. Odaibo at the hospital for him to see Kasen and look over his x-ray and CT scan. Dr. Odaibo was great with Kasen while he was looking him over and even better with my daughter Keira who was bugging him. He explained to us that Congenital Lobar Emphysema was something Kasen was born and was very rare. To explain it in a simple way Kasen gets air into his lungs but air gets trapped and not all of it can get back out. This causes his lung to expand and push on his heart and other lung.

We were able to look at the x-ray and CT scan and see what they were talking about. His upper left lobe of his lung was much bigger than the rest. You could see on the CT scan that his left upper lobe was so big it was on the right side of his body as well. Dr. Odaibo answered all the questions we had to ask and then referred us to Dr. MacLean in Edmonton. Because Kasen was in good condition we didn’t need to rush to Edmonton that moment. We were very relieved and went home and waited for the call from Dr. MacLean to find out when we would be meeting her.

June 28^th 2011 – Our first trip to Stollery Children’s Hospital

We made the 4 hour drive to Edmonton so we could meet with a specialist to get more answers and see what the next steps would be. We had an appointment at Stollery Children’s Hospital to meet with Dr. MacLean. She was a very nice doctor and explained to us more about what Congenital Lobar Emphysema was and different ways to treat it. One of the options was to have surgery to remove the part of the lung that was affected. The other option was to leave it and try and control it. Both options had risks and we really had no idea what we would do.

I really didn’t want my baby to have to have surgery, so I thought it was probably best to keep an eye on Kasen and try and keep it under control. That was until we met with the surgeon, Dr. Dicken. Again he gave us more information and let us ask him all the questions we had. If we didn’t do the surgery Kasen could live a life of having a hard time breathing and there would be a chance that his lung would grow so big it would completely block off his airway and cause him to stop breathing. And if that ever happened we were 4 hours away from the surgeon who was able to do the surgery to save his life.

How could I put his life at risk like that? I would worry every day that something terrible would happen and Kasen would stop breathing. So I agreed to do the surgery even though Kasen seemed to be fine at that moment. The surgery was scheduled for August 29^th 2011. We signed some papers and then started discussing any questions we had about surgery. Dr. Dicken had performed this surgery before and had great outcomes every time.

August 29^th 2001- Surgery

 Waiting for surgery.

Every single day I worried that I was making the wrong decision, and even more now that in just a few hours my baby would be having major surgery to remove his upper left lobe of his lung. I was as calm as I could be because I didn’t want to worry Kasen. I had to be strong for him. We met with the nurses, anesthesiologist and the surgeon one last time before Kasen would go for surgery. I was strong and kept it all together until the nurse came to take Kasen away. I couldn’t keep it in any longer I was so scared for Kasen. I was scared that I made the wrong decision. I was scared something horrible would happen during surgery and I would never get to see my baby again. I didn’t want to let him go but I had to. I gave him one last hug and kiss and told him how much I loved him and handed him to the nurse.

The surgery would take about 3 hours and he would be in recovery for about an hour then he would be brought upstairs where I would be waiting for him. Dr.Dicken told me he would come and let me know how surgery went as soon as he was done. It was the longest 3 hours of my life, waiting to hear if everything went ok. Then 3 hours turned into 4 and 4 hours turned into 5 hours. I was getting worried that something went wrong when finally, Dr. Dicken came in to let me know that the surgery went great and that Kasen was in recovery. He had been called to do another surgery after Kasen's surgery and was unable to let me know right away how things went.

We waited another half an hour for Kasen to come out of recovery. We were later told he had a hard time waking up and then was throwing up a bit so they kept him a bit longer to keep an eye on him. They wheeled him down the hall and I could see them coming so I ran up to them to see my baby. I was so happy he was ok. He looked so peaceful lying in the bed, much better than I expected him to look after just having major surgery. He had so many tubes and cords coming out of him. He had a ton of monitors hooked up to him so they could keep an eye on him.  He'd had an epidural to manage the pain, an IV in his foot, a catheter, and a chest tube to drain fluid.

After surgery and time in recovery room

With all the tubes and cords it made it very hard to pick him up so I needed a nurse to help manage all the cords so I could pick him up to nurse him. We were in what they called the ICE room. This is a room with 4 beds and 2 nurses so they could keep a close eye on patients. We had very little room, just a crib a little cot and a rocking chair all squeezed in the corner. That night, I sat in the rocking chair all night with Kasen in my arms because he just wanted to nurse and be held. Once he was asleep, it was too hard to move him because of all the stuff he was attached too. I was happy to sit and hold him all night if that is what it took to make him comfortable. But one of the nurses thought Kasen should sleep in the crib and every time he finally fell asleep she would move him to the crib. Of course, that woke him up and made him scream and scream until someone could help me pick him back up and sit in the rocking chair.

August 30^th – September 1^st- Recovery

The next morning, we were able to be moved to a room because Kasen was doing great. He was still in a lot of pain because of his chest tube. They managed his pain with his epidural, morphine, Advil, Tylenol, Gravol and occasionally some Benadryl because the morphine made him itchy. Once we were in the new room, I asked if we could have a bed instead of a crib because Kasen was far more comfortable if I was holding him.

I spent almost every minute in the bed with Kasen. I only put him down maybe 2 times a day so I could get up and go to the bathroom and stretch my legs. Other than that I held him in my arms the entire time. It was the only way he was calm and the only way he would sleep. Later on that night, I was moving him so he could nurse on the other side and I accidentally ripped his epidural line. So they took that out and just put his dose of morphine up to manage his pain. It was so hard to keep all his lines straight and keep him from pullling on them. Whenever he was awake he would play with the cords on his chest to monitor him. He would pull them off and the nurse would run in thinking something was wrong.

Kasen and Mommy in the hospital bed watching some TV.

The next day, August 31^st Kasen had an x-ray to check out the fluid in his chest to see if he could have his chest tube removed. Thankfully, he was able to lay in bed and have the x-ray instead of being strapped into that thing again. The x-ray showed that Kasen was able to get his chest tube removed and would have it taken out later on that day. That was great news because the surgeon had told us that the chest tube causes a lot of pain.  Every little movement causes the chest tube to move around inside of Kasen's chest, causing him a lot of pain. He also told us that once the chest tube was taken out we would only need to spend another day at the hospital.

Once the chest tube was taken out, I was able to pick up Kasen and take him out of the bed. I could stand and rock him when he got upset. It was nice for both of us to be able to get out of the bed once and a while. They even started to lower his morphine to see how he managed the pain without it. Every few hours, they would turn it down and wean him off of it. He seemed to be getting back to his normal self more and more every time they lowered it. It was nice for him to be awake more and even smile and laugh.

No more chest tube means we can get up and walk around a bit.

I am much happier without that chest tube.

September 1^st Kasen had another x-ray to make sure everything still looked good. But this time we needed to go downstairs and get the x-ray for a better picture. I sent Kasen into the room with his dad because I didn’t want to see him like that again. A few minutes later, they came out and told me how well Kasen did in there and we all went back upstairs. A few hours later we got the results from the x-ray and found out that Kasen would get to go home today. I was so happy that Kasen was well enough to go home after only 3 days in the hospital. He was such a strong boy for going through all he had to at only 5 months.

Once we were home from the hospital, Kasen was on just Advil and Tylenol for about a week and it managed his pain just fine. We had to be very careful around his incision spot and keep the tape on and not get it wet for 10 days. After the 10 days he was almost 100% back to his normal self. A month after surgery we went back and saw Dr. Dicken for a follow up appointment. The plan was to have another x-ray but because Kasen was doing so great no x-ray was needed.

 Kasen at home just days after major surgery.

January 25th 2012- Today

Today Kasen is a happy and healthy 10 months old. He still has a small scar from his surgery but other than that, you would never be able to tell that he had major surgery less than 5 months ago. He doesn’t wheeze anymore and he doesn’t have any trouble breathing. He gets colds and we don’t have to worry about him not being able to breathe. He crawls and can stand all by himself and is almost always smiling or laughing. He will grow up to live a normal and healthy life, thanks to everyone who took such great care of him at Stollery Children’s Hospital. I am forever grateful to them.

 Kasen, 10 months old.