Traveling with a chronic Illness

We've shared a little about our Jakers and his KT Syndrome, but so many have asked, what is KT Syndrome? Is he okay? So, the best way for me to share, is to blog about it. Our middle son Jake has something called  Klippel-Trenaunay Syndrome (KTS). Link is attached. KTS is a lymphatic and vascular malformation. To put it in non medical terms, he basically has a ton of extra lymphatic tissue, too many blood vessels to manage and cysts throughout his abdomen. KTS is treated symptomatically  meaning when he spikes a fever, we go into the hospital, when he has pain or bleeding, we go to the hospital, if he isn't acting himself, pale or mama is concerned, we go to the hospital.

He was born in 2010 and we knew from ultrasound he was going to have some sort of malformation on his leg and bottom area, what it was, we were not for sure. When he was born, his right leg and bottom were larger than the other. He had 3 little blueberry colored toes and several port wine stains (birthmarks) on his bottom and leg. He was kept in the NICU at Loma Linda University in Southern California for 9 days before the doctors realized he's okay and sent us home. The next few years were followed by several infections, clots, laser treatments and lots of hospital stays. During this time, I also lost my husband, Jakes Dad, in a motorcycle accident. (I'll save that for another time.)

When Jake was 3 1/2, he was admitted for 2 weeks at Rady Childrens Hospital in San Diego. This was his longest stay and this mama bear was not about to be sent home without answers. They decided to start him on a trail medication that was heard to have slowed down the growth of his leg. We were released on Halloween, 2013 with a home IV and nurse visiting for the next 2 weeks. To our surprise, the medication worked. Before we knew it, we hit 3 months, 6 months and then 1 year without a hospital stay. The medication began to control the growth of the lymphatic tissue and lessen the pain he felt. He became more active, happy and better all around.

Overall, Jake will deal with his KY Syndrome for the rest of his life. How does it affect him today? He is quick to get more tired than other children, his heart is pumping so much blood through his body, that he wears out more. Hence, the reason for the wheelchair. We can be out for longer periods of time when there is a lot of walking. The wheelchair also helps because on days he is in pain or uncomfortable, we don't have to hold off visiting the zoo, we can all still go and enjoy ourselves. 

How do we travel with Jake and a chronic illness? When we first decided on this adventure, we didn't want Jakes medical stuff to hold us back. We knew he could do it, and if it didn't work, we'd come back. I travel with his medical file and the knowledge of where a hospital is in reference to where we are. I have his doctors number on speed dial, hematologist, dermatologist, urologist and his pediatrician. So far, so..... I don't want to jinx anything. Each time we come home, we visit doctors, take care of blood draws and make sure he's healthy. Are we anticipating a bump in the road? We are always prepared for it. 

Hes a tough, stubborn kid but my hope is that it makes him a stronger more well rounded man one day. 

Feel free to ask questions!