Well, now it's been three months because that's the kind of Summer it's been. Kind of nuts. Now I'll write what I can off the top of my head because that's all I have time for. So again, I apologize for poor grammar and turn of phrase. Thanks for understanding.
When we last visited our hero:
G-Tube: We spent the Summer trying to get the hang of this new tool in his arsenal. It got off to a very shaky start. I wasn't able to attend the training so learning it on my own felt like I was trying to rebuild an engine with the instruction manual in Mandarin. I don't speak Mandarin.
Once we got past that it took us two days to figure out that the beeping alarm every 10 minutes wasn't due to our lack of knowledge or skill but a malfunctioning pump. We ordered a replacement. It wouldn't hang on the pole correctly and kept flipping upside down. Herb macgyvered it so we made due for few more days for the replacements replacement.
Technical difficulties behind us Micah and I finally got it figured out but then the real trouble started. Gaining or even maintaining weight has been nearly impossible for Micah. So getting these nightly feedings figured out was vital. The formula the dieticians prescribed were making him sick. If we ran the pump at the rate needed to finish in less than, say, 10 hours it made him very sick to his stomach and he would have to turn it off early. It just wasn't working. By his six week follow up appointment he hadn't gained any weight. In fact he had lost some. The Dietician did some digging and found a different formula that claimed to easier on the stomach. Over the next several weeks the night feedings continued to improve and he got them up to the desired rate so they could run and finish while he slept. So that's the good news. The bad news... his queasiness during the day never got better. In fact it got worse over time. He often woke up sick to his stomach and his appetite continued to get worse to the point he would barely eat. It took us a while to figure out what we thought might be going on which brings us to...
Atypical Mycobacterium: Back in May a lab test revealed a diagnosis of an atypical mycobacterium. We didn't know that that was either - so don't worry about it. We've since learned among other things it causes fevers, diarrhea, malabsorption and anorexia, and can disseminate to the bone marrow. But we also learned it would mean a serious attack of antibiotics were called for and a new specialist Dr. Winthrop from Infectious Disease at OHSU. We learned treatment involves a combination of antibiotics, including rifampicin, amikacin, ethambutol, and azithromycin over a long period of time - sometimes up to two years. It's not something to be taken lightly and it's not something he will be able to get rid of. At best it can be beaten back. Anyhow, Amikacin was administered intravenously twice daily through a PICC line for several months. It's pretty powerful stuff and we had to keep close watch on his kidneys and hearing which can be damaged during treatment. The other drugs are oral and he's been taking them for months clear up until last week. Meanwhile...
Hospital Stays: There's been too many. It seems that Micah has spent more time in the hospital this year than he has at home. I've been trying to press in and learn all I can and be more available to Micah to help him manage his care but it constantly feels like we're juggling full glasses of water while trying to balance on a teeter-totter on shifting sand. Our family also has Grandma Gentert living with us who has Alzheimers and a three year old (Micah's little brother Corban) which means there isn't really enough of me to go around and I'm not able to help him directly as much as I wish I could. Micah's many returns to the hospital have meant even more antibiotics in addition to those needed to battle the Atypical Mycobacterium. His last hospital stay (prior to this present admission) put him on Cipro which can be pretty tough on the stomach. While Micah's appetite continued to wane it finally occurred to me that maybe all the drugs were eating up his stomach - literally. His primary lung doc agreed. We pulled him off of ALL the antibiotics to see how he would do. Within 24 hours I saw him eating and he seemed to have a little more energy. Withing 3 days he was able to go out and do something besides lay around the house. It felt like a little victory but we were apprehensive because we knew those drugs were necessary and we were a long way off from the end of the treatment plan. Within a week Micah started feeling horrible and last Thursday evening I had to take him to the ER and they admitted him.
He is doing better - they're throwing a lot at him right now. All the antibiotics are back - plus a couple for his current infection. They're working hard to help him gain weight since eating calories is a bit touch and go for him still. Prayers are welcomed. Matthew 18:19
It hasn't all been sickness, frustration and hospital stays. Some really excellent things have happened too. But that will have to wait for my next entry. Soon. I promise.
