Chylothorax

Chylothorax is a type of pleural effusion. It results from lymphatic fluid (chyle) accumulating in the pleural cavity. It's cause is usually from the thoracic duct or one of the main lymphatic vessels that drain into it. (wikipedia) In short, chylothorax is a result of a leak in the thoracic duct into the pleural cavity (sack the lungs are in) filling the lungs up with chyle, and depleting lung capacity.
On August 18th, 2010, our sweet little two month old baby girl, Madilyn, was life-flighted to Boise due to this condition.
I have been reluctant to write about this until now, due to all of the emotion that has been involved, but I feel that it's important to write it down.
On Sunday, August 15th Madi started choking, coughing, and then threw up, which was very unusual for her. We were concerned, but it didn't happen again that night. We decided that since we had her two month appointment the next day, we would talk to the doctor about our concerns.
Monday August 16th we went to Madi's 2 month appointment, which included her 2 month shots. She did relatively well, considering. We told the doctor what had happened the night before and, and he didn't seem too concerned, stating that it was normal for children to start spitting up more around that age.
Throughout the rest of the day we noticed that Madi was fussy, wouldn't eat, and seemed to labor in her breathing. We were concerned, and weren't sure if it was due to the immunizations, or what had happened the previous night. Monday night we were over at the Tree's and Madi was acting really hungry. I tried to feed her three different times and she refused to eat, even though she hadn't eaten in awhile, and was hungry. I went to burp her thinking that she had swallowed a lot of air when she was crying, and she started choking again, and wasn't breathing. She gagged, but didn't spit up, and continued not to breathe. She went stark white, and then started to turn blue. I was scared. I patted her on her back and she started to breathe, and then started to cry. We were both concerned. We took her home and I tired to feed her again. She ate really well, but when I went to burp her it was followed by more coughing and spitting and gagging, all while her trying to catch her breathe.
We decided to call the hospital, since we live 30min. away from the Twin Falls hospital. They were of no help whatsoever. She didn't have a fever, so they said not to worry, but to get into our doctor the next day. Neither of us slept at all that night, so concerned about our sweet little girl. The next morning we called to make an appointment with our doctor, but he didn't have any available appointments. We made an appointment with another doctor, but we later cancelled it because we had seen that doctor before, and didn't have a very good experience. We called the doctors office and talked to a nurse who told us not to worry, it didn't sound like a big deal. At this point Madi was very pale, had labored breathing, and was very lethargic. She was eating, however, so we decided to take the nurses advice. We went about our day as normal, and went to Twin as a family to run some errands.
Madi continued to be very lethargic, and we tried to wake her to eat. She finally ate a good amount. I thought maybe she was more used to me feeding her at home, so we headed home. When we got home I tried to feed her again, but she wouldn't eat, when I went to burp her, she started coughing and throwing up. We asked Scott to come over to help Isaac give her a blessing, which he promptly did. We then decided that we needed to take Madi into the ER. We went to the hopital in Gooding, which was the closest.
We were erring on the side of caution, figuring that we would be back home within an hour. Renae came over to watch Gabi. We packed a quick diaper bag, and were on our way.
When we arrived we were suprised and grateful that they weren't very busy. We went in, they took her vitals, and we waited for the doctor. All the while Madi was smiling and talking, like usual. They had a hard time assesing her O2 (oxygen) levels, they kept reading about 85. The doctor came in and lectured the nurses saying that no way could a baby look as good as she does and have a 85 O2 reading. Somehow a nurse finally got 95, and they called it good. We waited for several hours. They had pediatric trauma patient come in, and because Madi looked so good, they put that child in front of her, even though he came in after. In the meantime they put Madi on oxygen alternating with albuteral to open up her lungs. It had no affect on her respiratory rate. It was at this time the ER doctor started to become concerned and took initiative to get things rolling.
He told us there might be some serious things going on. Little did we know the implications this statement would have in the weeks to follow. They took her in for chest x-rays and then sent us to a trauma room. I knew that once we were sent into that room, something was going on. Madi was not doing so well at this point. She was hungry, had been poked many times, now had an IV in her foot, and she was really tired.
The doctor called us into his office, just a few doors down. This was just the beginning. I was not prepared in any way, shape or form for what he was about to say. He showed us the x-ray where, with our inexperienced eyes viewing x-rays, we were clearly able to see that her entire left lung was filled with fluid, pushing her heart completely over to the right side as well as pushing over her trachea. Her right lung also had fluid in it. She was working off of half of one lung. Our sweet little girl was in a lot of pain. He then told us he didn't know where she was going but she needed to leave as soon as possible via life-flight either to Boise's children's hospital or to Salt Lake. I completely lost it. I heard our baby girl crying, and so I left and went to her, feeling so numb, in such shock at what I had just heard. Isaac stayed to work out the details. I went into Madi's room and held her, not really knowing at that point if she was going to make it. I held her in my arms looking at her perfect little body, thinking that if I could take this all away from her, I would. I wish I could have.
Isaac came in and told me they were getting a special team together in Boise that would come pick her up, and a special team that would be ready when we got there. I told them I was going on the helicopter. Isaac would have to go home and get Gabi, and drive there. About a two hour drive from Gooding.
As we waited for them to arrive, and I held Madi in my arms, all I could think of was how I couldn't lose her, I just couldn't. As Isaac was about to walk into the room, he was talking to the doctor who said, "If it had been one more day, she probably wouldn't have made it."
For the next few hour, there was a lot of uncertainty about what the final outcome would be. We still didn't know what was going on with Madi; why her lungs had filled up or what the fluid was. They suspected pneumonia, but weren't sure.
The team arrived and immediately went to work getting Madi into an incubator, which she would be life-flighted in, and getting her hooked up to all the monitors. It was hard not to be able to hold her and console her and hard to see her in so much pain. I felt very confident in the team, of two very knowledgeable women as they talked me through what they were going to do, and what would happen when we arrived there.
Due to space limitations, I sat in the front with the pilot. I have never been in a helicopter before, and the unsteadiness of it due to wind only added to my anxiety, however I was very grateful that they let me go.
That 40minute flight was excruciatingly long. The whole time I was praying that she would make it, not knowing what was going on in the back, since we are separated from the back. My heart ached, and my mind raced.
We had to land at the airport, since the helicopter had to land early due to a warning light going off, which is standard protocol, apparently.
We then waited for an ambulance to come and pick us up. Suprisingly Madi had done very well, until we landed. She's a motion baby, I guess she slept the whole ride. I talked to her through the plastic of the incubator, and she calmed down a bit. The ambulance arrived and we loaded up and headed off to the hospital. We arrived at the hospital and went straight up to the Pediatric Intensive Care Unit of the St. Luke's Children's Hospital in Boise. They rushed her in to a room and immediately began transfering her into the bed and hooking her up to all sorts of monitors. My parents, who moved to Boise about 4 months ago were already at the hopital waiting. Unfortunately I didn't have time to talk to them, decisions had to be made. Dr. Christenson took me over to look at the x-ray while they put a new IV in Madi. He showed me the x-ray I had seen in Gooding, supposing it was pneumonia. He said that the only real option that we had was to put a chest tube in and drain out the fluid. We would then be able to know what the fluid was, and go from there. I felt very confident in him, and we went ahead with the plan. When we went back in, they already had the IV in place, and began to prep for the chest tube. The chest tube would be placed through her ribs in the the pleural space, where the fluid was. I had my mom go call Isaac to keep him updated on what was happening, since he was still on his way. They sedated Madi and went to work.
Dr. Christenson first inserted a needle that threaded the tube in, much like what is done with an IV. As soon as he took the needle out liquid came squirting out everywhere. He took a sample, and then hooked the tube up to an apparatus that gently sucked the fluid out. The amount that initially drained out was approximately 8oz in just the left lung! They didn't know how she was able to breathe. Soon after Madi came too. She was given some pain medicine, since chest tube are very painful. The doctor was suprised to see the substanc that came out was a yellowish color, the color of Chyle. They then had to determine an entirely different approach, since they thought that she would have pneumonia, and not chylothorax. In some ways it was good, on others it would lead us on a long journey, that we are still on.
The next few weeks were filled with uncertainty and a lot of trial and error. Madi was in the intensive care unit for 5 days, and then remained in the hospital for another 7 days.
She is now home and is on a special formula that is low in fats, since the fats that she was eating before is what was being dumped into her lungs. She came home this last Monday, and so far has been doing really well. We are still concerned, and will be for a long time to come. She will continue to have regular x-rays for the next several months to make sure that her lungs don't start to fill up again.
Gabi is doing well, and is really cute with her sister. She comes up and talks to her, telling her all about whatever it is she's talking about. She gives her kisses, and hold her pacifier for her. They love eachtother. Madi loves watching Gabi, and I can just see her trying to be like her as she gets older. We love our girls!
There is hope for full recovery, and no lasting effects from the chylothorax.
Even though this has been really hard, we have learned a lot, and drawn closer together as a family. We have witnessed miracles, and felt the loving arms of our Heavenly Father wrap around us as we struggle to be strong for our children. I know I personally have gained a greater understanding and appreciation for the Atonement. I am so grateful that we have the knowledge of the gospel, I feel like I would be truly at a loss without it.
There are many other things that I could go into detail about, but I feel a little emotionally taxed right now. If you have any questions at all, please feel free to leave a comment, and I will respond as best I can.
Thank you all for your love, support, and prayers. It has made a bigger difference than you will ever know.