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.
I posted a bit of an update in the comments:
Today he had an endoscopy, for which he had to be under anesthesia. Horrible. He has seen a cardiologist, an immunologist and allergist, a gastroenterologist. He’s had a swallow study, a brain scan, an EKG, a cardiac ultrasound and EVERYTHING checks out normal. We are on the waiting list for feeding therapy. It’s a four-week inpatient stay. I’m sort of falling apart.
Here’s a bit more on all that.
We go to lots of doctors appointments. Sometimes three or four in a single week. And every doctor, every procedure – they’ve all lead to one dead end after another. Immunologist, Cardiologist, Gastroenterologist, Oh my. Charlie’s endoscopy revealed that while he may have a bit of reflux, that’s not the source of his refusing to eat. His innards look lovely. His cardiac ultrasound revealed a beautiful ticker, ticking away just as it should. The gastroenterologist believes his problem to be wholly unconnected to his digestive system and is ready to release us. To a neurologist. For more tests.
The ‘ologists in general have been a parade of frustrating and sometimes infuriating interactions. One didn’t listen to my voicemail about a lab error because he’s “not a fan of parents looking stuff up on the internet.” No, I’m not kidding. Another helpfully suggested that perhaps “god and time” might heal my son.
God. And time. I looked around the room to be certain I was in a doctor’s office and not a chapel.
Through all of this, I have tried to drag myself out of the fog of stress and worry to crack a few jokes and take comfort in the fact that our son is healthy and happy. He just eats through a tube in his nose. But one non-answer after another and I’m at a place where I want to scream, MY SON EATS THROUGH A TUBE IN HIS NOSE! And although inpatient feeding therapy sounds extreme, Charlie hasn’t eaten in nearly two months and we believe that this is the best way to undo old habits and form new ones – and hopefully, a positive association with eating.
Some days, I feel that all I am is my son’s disorder. Which, from talking to another mom of a kid with special needs, is a pretty common feeling. Some days you’re just drowning in it. The worry – over his long term well being, over your shorter term financial struggles, over your own inability to help your child with such a basic need. I feel so powerless. I can’t plan or make real decisions, only react to the ever changing demands of my tiny overlord. Whom I love so much.
I owe some of you some thank you’s for the kind donations – I cannot tell you how deeply I appreciate it. I swear I’ll get caught up on my mail this week. I think we have a break from ‘ologists until next Monday.