Nathan

Hello everyone, especially 2old2playhalo

It has been a long hard road since last I stopped by and posted in September. As you may remember (or not) my son, Nathan "Danger" Smith was born in August and at the same time we moved to a new job and a new home in Nebraska. The move and the hospital bills put us a little behind in the cash flow department, as such, we had to nix the internet connection. In September my wife, Nathan and I attended the Plains Anthropological Conference in South Dakota where I had access to the internet and posted a brief message. My son became quite ill while we were in South Dakota and I spent the entire time caring for him. After we returned home Nathan's illness continued and we took him to the doctor/hospital several times over the next week. Finally, he had an abdominal ultrasound done and the problem was identified. Nathan was diagnosed with PKD (Polycystic Kidney Disease).

My wife had a younger sister who was born with PKD in 1978. Nicole died at the age of 2 months, and was at the time, one of the longest surviving babies born with PKD. Givin what we knew of the disease the diagnosis seemed like a death sentence for our son and was devastating. Of course we were unaware of the progress that has been made in dealing with this disease in the last few decades. PKD is a genetic disorder that he inherited from both parents and will not manifest unless present in both parents, and then there is only a 1 in 4 chance of getting it. This disease causes the kidney's to develop numerous cysts (hence the term, polycystic) and enlarge. Currently Nathan's kidneys are larger than mine. Eventually both kidneys will lose function and he will have to have a transplant but he can not have a transplant until he is at least 22 lbs. If he loses kidney function before he reaches 22 lbs. (which is likely) he will have to have dialysis every few days until he has a transplant. Nathan also has cysts on his liver and it is fibrotic, most likely he will have to have a liver transplant sometime during his life. The worst part of the kidney transplant is that, even if everything goes good, most transplants only last an average of 10 - 15 years. Potentially my son could be looking at a half dozen or more kidney transplants, during his life.

The last few months have pretty much been a blurr of doctors and hospitals. In addition to the PKD Nathan has had two severe UTI's (Urinary Tract Infection), a Staph infection, heart damage caused by his high blood pressure (which averages 120/70 but has been as high as 196/145), two surgeries to place a central line, a NG tube (feeding tube) that sometimes he pulls out several time a day, more IV's than I can count and is currently on 10 different drugs (twice daily, some thrice daily). As bad as the Hospitals seem, it is in some ways worse when they send us home. At home I give him all of his drugs, make sure his feeding tube is running fine, gets his food every 4 hours, and his twenty some doses of drugs in addition to cooking, cleaning, bills, and everything else that has to be done, with the exception of sleeping.

At times it seems as though I just can't go on, then Nathan will laugh or smile at me and it melts my heart and makes me cry. I love that boy so much and it just kills me, all the pain and misery he has to endure on a daily basis. It makes my bitching and complaining so tivial, and of course I feel guilty. The other day when Nathan was getting catheratized, the third time in three days, he turned his head and looked at me with his sad little eyes, but he didn't scream once as they shoved a tube into his penis and up to his kidneys. My boy is 5 months old and he is as tough as nails, and despite his illness and everything he has been through, and continues to go through, he is also a happy boy.

Currently we are back in the hospital in Omaha trying to figure out why he keeps vomiting 10 times a day and treating his second UTI (the first took 6 weeks of antibiotics).