Now that we are back home and getting used to being in a routine again, I finally have time to update this site. Zack was very excited to come home and giggled when he climbed into his bed. He said he missed his pillows and his cozy sheets. I felt the same exact way. To make our first night home even better, Zack slept through the night for the first time in months. I am pretty sure I heard rejoicing in the heavens…or that just might have been me.
While Zack was in the hospital, the doctors told us that it was time to start looking at some more obscure things. I guess doctors have a saying that goes something like, “Don’t go looking for zebras.” Meaning, don’t go looking for a complicated illness when a more common one is most likely. The attending pediatrician on service this past week is a GI as well. We have known him since 2013 and have great respect for him. During rounds he told us that it is time to start treating Zack like an albino zebra. He said that Zack has been “medically brittle” for a long time and on the brink of disaster for months. It is time to start digging deeper to see if we can come up with some reasons for Zack’s super high output and sodium losses.
Big brother helping Zack be brave for his PICC dressing change.
Walter Reed and Cincinnati shared testing information so that we do not have to repeat a bunch of tests. The doctors here came up with some new things they would like to investigate. One thing they are considering is the possibility that Zack’s intestines are not processing sugars correctly. This is all new to me, so it is quite possible that I am getting things wrong here. They want to make sure his pancreas is functioning well and a few other things. They said many things. My brain was tired. I cannot remember it all. I need a secretary.
One of their plans was to have Zack undergo another endoscopy while he was in the hospital. Sadly, he had a pretty good cough and anesthesia is never a good idea when you have a cough. We will schedule that in the next few weeks. During the scope they will take tissue samples from a variety of places. I know they will be looking closely at the villi to see how certain enzymes are being processed. They want to magnify tissue to many times greater than a normal biopsy to see the arrangement of cells. They also talked about getting something from his bile ducts. Again, I need a secretary. If I come back in a few weeks and write something completely different, you can assume I had this wrong…but I am fairly confident at least some of it is correct.
Zack’s high output also causes him to lose a lot of sodium. I always knew low sodium (hyponatremia) could be an issue, but I did not realize just how dangerous it can be. Because Z’s levels have been low for so long, we spent a lot of time in the hospital getting his levels back to normal. In an effort to keep them normal and prevent such big fluid losses, his doctors have suggested putting him on CeraLyte 70 as his primary form of liquid during the day. CeraLyte is a oral hydration therapy and comes in several different strengths. In addition to using CeraLyte 70 for daily hydration, they sent us home with “rescue doses” of CeraLyte 90 to give through his g-tube when his output is really high until we can get him in for labs. From their literature: CeraLyte 90 is for severe diarrhea and dehydration–where fluid losses are high–such as in cholera or with short bowel or ileostomy. Who knew this was a thing? Why didn’t anyone know about it before? So many questions…
All of that sounded great when Zack was in the hospital. And then we came home and actually got the product. Our home health company could only send the natural flavor at first and let me tell you…it is not something you can sell to a kid as something fun to drink. While we can give it through his g-tube, Zack likes to drink and if he cannot have anything else all day it isn’t going to work. Actually, he can have 6 ounces of another liquid, but have you seen ever measured 6 ounces? I’m pretty sure we will have a mutiny on our hands. We will see his GI on Monday and talk about the plan and see if we can turn it into an executable one.
Zack and Aslan. Quite possibly the most awesome dog in the world. By the way…Zack is 49″ tall, so that is one big puppy!
The good news is that Zack’s sodium levels were all in the normal range when we left the hospital on Tuesday. That was the first time that has happened in months. He feels great and is back in school. Speaking of school, Zack received his new laptop today and, even better, they trained me on how to use it. I am pretty sure I needed the training more than Zack. He is so excited to have his own computer. He has already mastered the Kurzweil reading program and is enjoying The Lion, The Witch and The Wardrobe.
Trying out his new laptop.
As you can see, things are getting back to normal around here. We are so grateful for all of the people who helped us get through the past two weeks. To all of our awesome neighbors, thank you for helping Jim keep Zack stable and for transporting him to the hospital. To all of our awesome hospital friends, thank you for taking such good care of Zack and of me. To our friends and family, thank you for checking on us, visiting us and bringing us food. You all rock!
Hug your babies!