Halloween in the Hospital

My guy Luke has had a rough couple weeks. He has been having fever and vomiting off and on for a week, and diarhea for much longer. A stomach bug definitely made its way through our house last week. Alexa, Sean, and myself were all affected at varying degrees.  Luke got hit hard. I took him to the ER Monday morning for dehydration and dangerously low albumin (protein) levels. 4 days later and we are still here. Last night we found out that Luke has C.diff. This is a germ, or bacteria that lives in the colon that is known as flora, or gut flora. It turns to C.diff and becomes toxic when the flora becomes over grown from antibiotics. This made sense to us because about a month ago Luke was on antibiotics for about 10 days and that is when his bathroom issues began. We stopped other medications hoping they were causing the problem, but they weren't and his problems continued. So, we are still admitted and he is now being treated for C.diff (Clostridium Difficile Toxin).

We've learned more about Luke's kidney disease since we have been here. We found out on Monday that Luke no longer has 100% function in his kidneys. Through this whole journey since age 2 Luke has always had 100% function. Even after finding out that 50%of his kidneys were scarred, we still had that silver lining.  He was still functioning at 100%. On Monday he was only at 50%. After treating his dehydration his function went up a bit, but we are not expecting it to return to 100%.  And taking into account all the other factors, such as the scarring, and the fact that he has been relapsing for months, and that he is steroid resistant, the nephrologist is assuming that it will decline further. Luke's kidney function could stay where it is for some time, or it could go down slowly, or it could decline quickly, we have no way of knowing. What we do know is that once the function gets to 30% we will start the process of finding a donor and getting him a transplant.  Like I said, it could be months, it could be years. If we start the process at 30% then we can do an elective transplant with a living donor. He won't have to wait on a list or wait till his function is so low that other organs begin to fail. We will avoid dialysis, and get him a new kidney.

So, here's the plan. Get rid of the C.diff. No more cell cept. It hasn't worked yet and it has had him so weak that he is constantly sick. Luke will only take his Ace Inhibitor, which is believed to stop the progression, and diuretics to manage the swelling. We will test his function every couple months and move forward as the tests suggest.

For now we just want to go home. Luke misses school and his sister.  Alexa has pretty much moved in with Nee and Pa. They watch Dancing With the Stars together and Alexa is running her own hospital for stuffed animals out of their family room. We are so thankful for the flexibility at Nee's job. A big thank you to her bosses for letting her do so much from home! And Thank you to Nee Jojo for hanging with Luke so I could take Alexa Trick or Treating.  Thank you to everyone who has reached out. Our family, friends, and the families at St. Irene. It really means a lot to us to know that we have so much back up and support.

Please pray that Luke will continue to be strong and breeze through whatever may come next.