Well Gib is in Orlando this week and I'm sorry but his computer is the one that can handle the camera. So, you will just have to get a written update and we will post pictures as soon as he gets back. That being said, Ellie is really cute right now. Yesterday was a big day, she cut her first tooth. She has been chewing on everything and yesterday she chewed on my finger and the tooth was unmistakable.
I also had a team meeting yesterday with all of her doctors and nurses to get a better handle on her progress and where we are going from here. Ellie's small intestines have very little motility, so food just pools in them for hours at a time and then very slowly moves on to the large intestine. Because the food spends such a long time hanging out it is a great place for bacteria and yeast to grow. Most people do not have any bacteria or yeast in their stomach or small intestine, it all lives in your large intestine. Because Ellie is missing the valve between the small and the large intestine the bacteria from her large intestine travels up through her small intestine and into her stomach.
So because of this overgrowth her intestines are irritated and inflamed. This has made it so that drugs that we used to treat the overgrowth were able to transfer from her intestines to her blood stream. Because patients should not be able to absorb the drugs through their intestines the amount that is put in the intestines is more than you would give if you were injecting the drug. Almost all the drugs that are used to treat overgrowth have listed in their drug safety info that they do not transfer from intestines to blood. But Ellie apparently is the exception to that rule. And this is how we had the kidney damage a few weeks ago.
Almost all antibiotics leave the body through the kidneys so when she absorbed too much Gentomyacin it went through her kidneys and overwhelmed them. So her kidneys kinda went into shock and only did about 40% of their job. So it has been almost a month since we discovered the problem and her kidneys seen to be recovering nicely. Now because Ellie has potential to absorb other drugs we are limited to the antibiotics and anti-yeast drugs that leave the body through feces. That leaves us with only 2 antibiotics and 1 anti-yeast.
If we stayed with our current treatment of just managing her overgrowth with drugs then very quickly the bugs in her belly would be come resistant to the very limited selection of drugs that we have. Eventually, we would loose the ability to treat her overgrowth. So, now we have to look at fixing the cause of the overgrowth, which is her lack of motility. Two months ago we were looking at surgery as one of her options and now it is her only option. So to surgery we go.
November 20, Ellie will have surgery to create a temporary ostomy. She and her bowels will go through 5 days of prep before the surgery and we have been told that there is potential for this surgery to very long. Our surgeon may have repair or clean up from previous surgeries. We are meeting with the anesthesia team now so that we can hopefully avoid a trip to the ICU after surgery like last time. Gib and I are ready for big day, we have one week to try to get everything done that we need to before the big day. It is strange to say but I am excited about this surgery, it is a big step forward and I'm really ready for one of those.
After surgery we will have (if everything goes well) 4-6 weeks of recovery and learning how to care for her new ostomy. If you time out 4-6 weeks there is potential for us to be home for that big holiday in December, but Gib and I have decided not to talk about it. We will celebrate whereever we end up. Ellie will have the ostomy for many months until the dilation comes down or we decide that it is not working. Then she will go in for another surgery to have the intestines reconnected.
So that is where we are now. Ellie is on the floor at my feet right now playing on her new play mat. She looks great, and along with a new tooth she has new sounds. She has learned how to put her tongue to use and is now saying NANANANANA and this morning I heard GAGAGAGA. Yahoo! No delay in speech! The NANANAANA is starting to sound like and be used like NO. I am in so much trouble down the road if that is her first word. She is also huge! She weighs 15.7 pounds and is very long. She is in 6-9 month clothes right now and many of the onesies are getting too tight. Okay, I better go play with my girl she is about to start sucking on my toes. I promise pictures this weekend!