Three weeks ago, Charlie had surgery to (install? No, not the right word) place a Gastronomy tube (from here on out, the button). It was not a decision we took lightly but in hindsight, it’s one we should have made much, much sooner. It’s only been a few weeks, but already, this is a very different life we’re living. Mostly because we’re actually living. I’ve gotten out of the house more in the last weeks than I had in all the months prior. I no longer feel trapped. And I no longer feel guilty. The NG tube changed Charlie – it made him anxious and unhappy. It made us feel terrible, but we didn’t know what else to do, and with all the voices in the medical and therapeutic community assuring us he’d just *get* eating one day, we felt hasty and selfish moving to a more permanent solution. He hated that thing. I hated that thing. It was an anchor that kept me tied to the house, to my baby (whom I love most ardently) and to feelings of frustration and exhaustion.
Surgery wasn’t easy (here’s an “directly after” picture, for those who won’t be put off by a bit of ick). The few days following, just a cough or a sneeze could shock his little body with pain and that was very hard to watch, to know I’d caused, or at the very least, allowed it. I wondered if we’d been selfish. I did not wonder that for long. His recovery and return to happy, relaxed, easy going Charlie was quick and life changing.
We leave the house to take adventures. I have taken on a freelance gig – a small but crucial step toward normalcy for me. I’ve found reasons to put on mascara and use the blow dryer. Yes, he eats through a hole in his belly. That’s not exactly normal. But it works. So well. And as an added bonus, I get to see my son’s face, without all the tubes and tape. And god, it is such a beautiful face.
So. Charlie wasn’t exactly the valedictorian of feeding therapy. He did make some progress toward the end (drinking almost six of his required 30 daily ounces of formula – that’s progress. Ahem), but by then, the insurance company wasn’t willing to grant the therapist’s request for more time. I wasn’t too upset. I mean, what was a week going to buy us? Seven ounces? Tomorrow we have a surgical consult to discuss getting a G tube. We left the hospital not intending to go that route – the doctors and therapists were hopeful that he’d just *get* it once he was home and in his own environment. A home health company delivered a feeding pump (!!) and all the necessary supplies, including our monthly supply of four feeding tubes. But in the last five days, Charlie has pulled his tube six times. It’s just not working. We’re all pretty strung out.
I’m not even sure where to begin.
It’s hard, living in a hospital. Really hard. There have been days when I’m not sure why we’re here, nights when I’m texting the Dork Lord, at the end of my wits, begging him to please let me come home, moments when I’m dripping in Charlie’s vomit, being condescended to by some misguided nurse and wondering, if I punch her, will I go to jail or end up on the news?
It’s also oddly social, living in a hospital. The other parents and caretakers, because they’re the only people in your world who know what it’s like, what it’s really like, become such an important part of survival. And Charlie is a wonderful ice breaker. With those cheeks and drooly smile, he’s got friends all over this place. And in this place, you learn to read people quickly. Some, I try never to get stuck in the elevator with. And I’ve handed Charlie off to a woman I’d only just met so I could shower off the stomach full of formula he heaved on me. When I came back for him, he wasn’t so sure he was ready to go.
Charlie’s progress is spotty. One day he has me convinced we’re going to get this and the next, he’s taken a giant leap backwards. But I’m told that’s how it goes. With only 10 days left, though, I’m desperate to see more progress than backward leaps.
I’m so grateful for all the emails and comments and donations – I can’t tell you how much. There just aren’t enough words.
Charlie has been approved by our insurance company for, get this, a single day of inpatient feeding therapy. One single day. After that, our appointed caseworker and the insurance company’s appointed caseworker will duke it out for approval of continued care in seven day increments.
Who comes up with this shit?
The minimum amount of time recommended for successful feeding therapy is four weeks. So if the insurance goons decide to pull the plug early, and his therapists see value in him continuing on, we have decided we will do what it takes to keep him there. Sell my car (we own it outright, finally), fund raise, sell blood, prostitute the cats, whatever it takes. The cats have not been informed of our plans. I figure it’s something we’ll introduce to them slowly. With cat treats. They’re pretty blind to reality when there are cat treats involved.
Things have started to feel particularly desperate this week with regard to Charlie’s feeding tube. He’s gotten very dextrous and it’s nothing for him to yank it out of his face – a trick he has started performing WHILE BEING FED. It’s also impeding his development. We can’t let him roll over at night, for fear of him getting it wrapped around his neck. We can’t tape it to his back to avoid him wrapping it around his neck because he rolls over on it and pops it open, leaving him soaking in his own stomach contents. THAT was a fun night. I didn’t cry, but I’m pretty sure that was because of the meds.
Plus, we’ve run out of the tubes provided by the hospital during his stay in June. And our insurance, NATURALLY, doesn’t cover home health, which would provide us with more. We have to buy them ourselves. At $20 a pop, and Charlie yanking them out six, seven times a week, well, he’s got some expensive habits, this one. Truly, it’s not even the money. It’s the stress of it all, hovering over us. Am I going to get to sleep for more than a couple hours before he pulls his tube out again and I have to intubate a screaming baby at 3AM?
On top of all of that, Charlie is fed by gravity, through a large syringe. If he decides he doesn’t want to be fed and starts crying, it forces the formula right back up the tube and out the syringe. He more often than not does NOT want to be fed. This place is like a circus. Thankfully, he’s become a fan of PBS’ Dinosaur Train and that buys me about ten minutes of tenuous bliss. And he’s wild about the show’s paleontologist, which is so funny to me. That’s Charlie, in fact, watching Dr. Scott. Grinning like a fool.
I just want a baby who eats. From his mouth. And enjoys it. He’s changed so much since getting that tube – always a little fussy, always on the verge of emptying his stomach onto my lap, one way or another. I want him to crawl and roll and sit and laugh and swallow. I don’t cry, but I want to. I feel it down there in my stomach, rolling and gurgling. I know it’s the antidepressants keeping it there, but sometimes, I think I might feel better if I just got it all out.
Thank you for all your prayers and well wishes. They mean so much. And thank you for the donations – I know I promised thank you notes last week. They’re coming, I swear! I couldn’t be more grateful to you all.
A week ago, the biopsy results from Charlie’s endoscopy came back (normal) as did the labs they drew after the endoscopy was performed (not normal). The blood work revealed elevated levels of an enzyme (CPK) that indicate for muscle distress/deterioration, which along with another elevated enzyme from a previous test (Aldolase) are markers for things like muscular dystrophy. I felt like I’d been sat on by a rhino. Squished. Squished and nauseated. Although the gastroenterologist assured us there were muscular dystrophies that were nothing more than a nuisance, I wanted to be heavily medicated or drunk – it was too much to handle. With our neurology appointment more than ten days away, all we could do was wait.
Thankfully, there was a cancellation and we were able to see the neurologist this morning. Charlie’s fourth ‘ologist. The short of it is, he doesn’t think Charlie has muscular dystrophy, but he will reevaluate him in three months for any regression. The longer of it is, I had done some research on CPK and knew that elevated levels can be reported if it’s a particularly difficult draw. They had to try three times to get his blood that day. I could hear him screaming from the other side of the door. He still has little bruises on his hands, feet and arms. I mentioned this to the neurologist who confirmed my suspicion and said Charlie’s CPK levels should never have been checked after the endoscopy. Of course they show muscle distress – his muscles had just been cut on. He hasn’t explained away the earlier elevated Aldolase levels, but I’m doing my best to swallow that worry and wait for our next appointment. In three months.
Meanwhile, he did notice some weakness in Charlie’s shoulder tone – something I have been picking up on when trying to encourage him to sit. Feeding therapy will include physical therapy, so the neurologist seemed confident it would be addressed and remedied then. If all goes well, we should be starting therapy on August 18th.