I keep thinking I need to update the blog and let you all know how our family is doing. A lot has happened since we left the hospital last August. I will tell you that Matthew is doing well, and THRIVING! He is an amazingly tough boy that has been through a lot in the last year, but is the healthiest he's been in a long time. I'm going to see if I can post weekly and update a month of history at a time.
August of last year was a very hard time for us. Matthew had just come home from the hospital after being inpatient for 1 month. He wasn't well when he came home, just not sick enough to be in the hospital. Within 1 week of being home, Matthew's seizures increased to the point we thought he was on the edge of going into status epilepticus again. We knew we couldn't handle another long hospital stay. Matthew was very weak still, and on a lot of medications. After a very tearful conversation with our pediatrician, we didn't feel it was fair to Matthew to add to his suffering, and decided it best to admit Matthew into hospice care. His poor little body didn't seem to be bouncing back like we thought it would. I will tell you this was one of the darkest parts in our married life. It was so hard to tell the kids, so hard to look at Matthew and feel like we were giving up on him. But our goal for Matthew was to add life to his days, and not days to his life. It still brings tears to my eyes to think of that time. Matthew wasn't living anymore, he was existing. And it was hell for him.
This was the point where my blog went silent. I couldn't bring myself to type it. I couldn't share my emotions, or wonder what people thought of us. I didn't want to be judged by people who weren't walking our walk. I realize our true friends wouldn't have judged, I just didn't want that extra stress. I learned a lot about how I deal with grief. I literally crawled into a shell. We only shared our decision with our close family and a few friends. I didn't want the world to know. It was a very private time for our family.
Hospice came to our home and explained what they would and could do to help us. They met Matthew, and within 20 minutes of them being in our home, the nurse told us she was pretty sure he was fluid overloaded. We added up his TPN (IV nutrition), IV medications, and g-tube medications and found he was getting about 1700 cc's of fluid a day. That is a LOT of fluid for a 3 year old who is inactive. The nurses also figured that since he was fluid overloaded, the body was trying to get rid of so much fluid, it wasn't allowing his intestines to even absorb his medications. They suggested an immediate reduction in fluid. They also gave a seizure medication subcutaneously so his body could absorb it. Within 24 hours he was a new child. What a whole group of specialists at a hospital failed to notice, was picked up by a hospice nurse within 20 minutes. It was such an easy fix, and something that, because it was missed, almost cost him his life.
A lot of other decisions went into what things we would provide and wouldn't provide for Matthew , but we decided we'd had enough with TPN. He wasn't thriving, it caused his sepsis, and his fluid overload. We wanted to be done with it. We made the decision to switch him over to formula, slowly over the course of a week or so, and only give him the amount of formula his body could handle. We would let his body decide if it wanted to continue of if he couldn't keep going. Within a few weeks, he was completely off TPN, and on tube feedings again. Surprisingly without any problems, and on a much lower amount of fluid.
By the end of August, his seizures were better, he wasn't receiving medications subcutaneously anymore, and he was off TPN. We had scheduled to have his port removed (it had been in while we were running the antibiotics, and was considered contaminated) and he was starting to turn around. He was starting to LIVE again. He was living and thriving on hospice. What an oxymoron. We still had a ways to go. We weren't sure what was going to happen, but we decided to let Matthew and his body dictate what we do.
Next post: September