Thursday, August 9, 2007

Written in Oct. 2005

Kaden Thomas Boeckman was born August 14, 2004 at 4:45 in the morning weighing 9lbs and 13oz. From the outside he was perfect, while the inside was anything but. Kaden was born with a diaphragmatic hernia.

A diaphragmatic hernia is a hole in the diaphragm. Sounds simple, but children with these hernias have only a 50/50 chance for survival. In Kaden's circumstance the left side of his diaphragm did not develop completely leaving a hole in which his stomach, intestines, and a part of his spleen went through, crowding his chest cavity. His heart was pushed over to the central/right side of his body, his right lung was partially developed, and his left lung was hardly developed at all. Even in the best of scenarios, children with these hernias are extremely ill and require intensive support. Unfortunately, Kaden's course has been much more difficult than most.

Kaden started life at the KU Medical Center, where I was flown from Manhattan by helicopter to give birth. At birth he was put on a breathing machine (a ventilator). By the end of his first week of life, struggling to survive, Kaden became deathly ill. The doctors told us that he had less than a 20% chance of making it. They decided the best thing to do was to transfer him to Children's Mercy Hospital (CMH).

At CMH the doctors decided that the best chance for Kaden's survival was for him to be put on ECMO (extracorporeal membrane oxygenation circuit). This procedure included entering tubing into the two main arteries of Kaden's neck. This tubing carried Kaden's blood through a machine adding oxygen to his blood while removing the carbon dioxide from it, assisting his failing lungs. It was not a guarantee for Kaden's recovery, but without it he would have died.
After eight days on ECMO, Kaden made a much needed improvement. He was well enough to be taken off of this life support, although he would still required the support of the ventilator to keep him alive. However, once Kaden came off of ECMO he became severely ill with an infection to his blood. The surgeons were able to do the surgery to repair his diaphragm after about two weeks of ups and downs and lots of praying. Kaden was not as stable as the doctors would hope, but it was a must for Kaden to have this surgery, it was a now or never situation.

Kaden had been living with nutrients and lipids. About one week after his surgery, the doctors decided that it was time for Kaden to start feeding. They put a tube through his nose that went down to his stomach, and this is how he was fed. As if this poor little guy hadn't gone through enough, now he couldn't tolerate his feedings. After extensive searching, the doctors found a problem with his stomach, it was twisted. Three weeks after the last surgery, Kaden was under the knife again, this time to fix the problem with his stomach.

When Kaden seemed to have recovered , and was tolerating his feedings we began the use of a bottle. Kaden had other plans. After everything this sweet baby had been through he developed a severe oral aversion. He lost the natural ability to eat and swallow.

December 1st came yet another surgery. This included a feeding tube that was inserted into Kaden's abdomen as well as a fundoplication which means tying off a valve to keep the acid in Kaden's stomach from refluxing. Learning how to care for the feeding tube was very intimidating for us as parents at first. Little did we know what was yet to come.

A couple of days after Christmas we were told we would get to go home with Kaden. After staying at the Ronald McDonald House for four months we were ecstatic to go home and finally be a family. After two nights in the parent room with Kaden at the hospital, he became extremely sick, running an outrages temperature of 105.7F. Back into the NICU he went. Awhile after being back on the floor, Kaden began to have seizures from having such a high temperature. He also was having problems keeping his oxygen and carbon dioxide levels in a safe range. After doing blood work, an infection was found yet again in Kaden's blood. This infection stemmed from a central line Kaden had which was pulled the first day we were able to stay in the parent room with him.

Kaden was having other problems as well. The doctors couldn't put a finger on what was going on with our sweetie. Before being put on the ventilator and then after being taken off, Kaden was having issues breathing when he would get upset. Even so, we were back in the parent room with Kaden at the end of January, but again Kaden ended up back in the NICU.

As time went on Kaden had a harder time breathing and it just kept getting worse. The doctors finally got the family together and told us that without a tracheostomy Kaden would not survive. Although, they didn't know with the condition Kaden was in how well it would help. It is the most difficult decision as parents to make...choosing a life for your child of uncertainty or death. We have seen the fight in our little one's eyes, the drive and the determination to survive, and we felt like we had to give him every opportunity in the world. It is hard to give up on something or someone you love so much and that you believe in with all of your heart.
After the trach, Kaden was back to his happy, smiling self. He was doing wonderful. Suddenly, Kaden stared behaving in ways that weren't normal for him. After a chest x-ray, the doctors told us the news, Kaden's patch that repaired his diaphragm had popped, as well as the fundoplication. A little after a week of having surgery for the trach, Kaden was now going into surgery to repair the patch.

Kaden began to have the difficulties that he showed previously with having trouble breathing, although he was assisted with a ventilator that was attached to his trach. Time went on, each day as slow as the first. I was there with Kaden every day, staying at the Ronald McDonald House (which I adopted as my new home, and I think it adopted me as well). Kaden's dad came up on his days off, because unfortunately he had to continue to work. After being there for ten months the nurses and staff at CMH were determined for us to take some time and go out as a couple. A social worker had gotten us tickets for a Royals baseball game, and although we were hesitant to leave...we decided to go. However, I called about a hour and a half after we left. Kaden's report was alright, he had been fussy, but ended up going to sleep. I will never forget what happened next. I called again, about a hour after the first call. A frantic nurse answered the call telling me that we needed to get to the hospital as fast as possible. I have never been in a moment that passed so slow. She informed me that they had to do chest compressions on Kaden, that he wasn't able to get air to his lungs although he was on the ventilator and he wasn't maintaining his heart rate. When we got to his bed side our world turned upside down. The nurses working in the same area of the NICU that Kaden's bed spot was in, were in tears. Kaden's dad picked him up and he was limp. We thought he was gone. The doctors took a blood gas and his carbon dioxide levels were as high as they had ever been. They told us that they do not know anyone who has survived with such a high level and it didn't seem that Kaden would either. We did all we knew what to do at the time. We held him, kissed him, and told him just how much we loved him. We told him how proud we were of him and how lucky we were to have a chance to love somebody so special and have him in our lives. He had passed everyone's expectations. We called our family's and my dad decided he was coming up to Kansas City.
The fight came out in Kaden yet again. As I was holding him, crying and trying to give him all the love that somebody deserves in a lifetime, he opened his eyes and looked up at me and then at his dad. He just stared at us for a moment in a daze, not sure what was going on. What happened next was a miracle and shows the will of this little one, he smiled at us and then in a minute he was ready to play. My dad got to the hospital (in record time, may I add), not knowing what to expect. Much to his surprise Kaden was sitting in my lap playing, smiling, not knowing the grief everyone had just went through.

The doctors had decided the next thing to do would be to put a scope down Kaden's throat to see how his bronchial tubes functioned. They found the problem he had been living with the past eight months. Kaden has a condition in which his bronchial tubes have spasms and he can not get air to his lungs. Knowing the problem helps us know now what to do to help Kaden in a situation in which those tubes do collapse. So then it was decided that it would be in Kaden's best interest to be at home. The doctors didn't give us much hope, telling us that he would be the sickest baby that they have ever sent home. They didn't believe he would have a long life and that we would probably be in the hospital more than we would be at home.
Well, a week after we were home, Kaden was headed back to the hospital. For 11 days we were back to how our lives were for the last 11 months, fortunately we were back home before we knew it.

We were able to celebrate Kaden's first birthday at home with family. Even a few nurses from the NICU came down to help us celebrate. Kaden is doing extraordinarily well at home. He has physical therapy a couple times a month, but he definitely is not the biggest fan of it. We have trips to CMH about once a month, in which everyone there is so amazed and impressed with how well Kaden is doing. He is still a very sick baby, but looking at him one would see how happy and outgoing he really is.

Kaden has home health nurses that come into our home, averaging about 106 hours a week. As parents though, we feel that we should be the ones taking care of our baby, and of course, Kaden is more comfortable with us taking care of him. The nurses do make it easier for us to get out of the house if we need to, and they are there to provide an extra hand if needed. It has taken a lot of getting use to though, having somebody we don't know in our home.

"To call Kaden a miracle would be an understatement," as one surgeon stated. He has endured much more than any average person would have to in a lifetime but keeps on fighting all the while with a smile on his face. This was the largest and most terrifying roller coaster of our lives, but at the end of it all we would do it again to help this little angel feel as special and important to our lives as he really is.

We want to thank those who have given us support and who have kept Kaden in their prayers, your generosity will be in our hearts forever. God Bless.


Gabi's Daddy said...

Ok...I finally took the time to read this entry and I had no idea of all that you guys had endured. WOW is about all I can think of at this point. What we are going through seems like a drop in the bucket compared to what your family and little Kaden had to go through. It is an eye opener to see how hard these little ones fight for just a little extra time when most people take life for granted! You two are incredible people and that little Kaden...again...WOW. Good night big fella and sweet dreams!

Shannon said...

How scary it must've have been for you all! I hope your hospital visits are few and far between!