You know, I am not usually up on current events or pop news. I catch bits and pieces of Good Morning, America occasionally between getting children up, moving, and ready for their day. The only reason I know anything else is because A got me a subscription to Us magazine for Christmas. I’m currently still reading April’s first issue.
Yet, I heard about the new fad diet to help brides get skinny for their Big Day. They have a feeding tube inserted through their nose and they carry around their 1000 calories of liquid nutrition for 10 days to lose weight.
Take a deep breath, and absorb that…
Believe me, I am totally against this type of reckless behavior. As a nurse, I can only imagine the detriment this could possibly be doing to multiple systems of the body (and quite frankly, I think the doctor who is willing to do this…ugh!). As a mother, I am irritated that our daughters are being taught, once again, that you cannot be beautiful unless you are pencil thin, with big boobs, and lots of junk in your trunk.
What the news media fails to mention, or remember, is that…
I thank God every single day for the feeding tube diet.
My son survives because of this “wacky” diet. Without that tube giving him the sustenance he needs (plus vitamins and minerals), he would not be walking this earth. He has to sleep in a special bed with the head raised to a specific height. He has to sleep with a plastic tube running from an IV type pump to his stomach. If he rolls over, it pulls on the tube causing pain. If he pulls the tube out…he could damage himself permanently. He receives every medication through his feeding tube. It has to be covered when he plays so that he doesn’t pull it out, and so that nothing foreign could get near it causing infection. He can’t ride many rides at theme parks, because the bar to hold him in would rub his tube. He can’t play like other kids, because he might pull the tube out.
Every pound he loses will take weeks or months for him to regain.
So, sure, it sounds like a great way to shed pounds fast (can you hear my eyes roll?).
Please, put some more stigma on my kid while you’re at it too.
Is this optimal for Jack, no.
Is this the way I pictured my life, no.
When we were faced with having Jack’s tube placed, I agonized. I researched. I cried. I begged God to miraculously touch my son and heal his brain so he could swallow. I sat with speech therapists and cried. I talked to other moms…and cried. And when I held my tiny, 13 pound, 8 month old son when he came back from surgery, I cried. I cried because I knew his life was saved. Even though that was the hardest decision I had ever made.
That was almost 5 years ago.
I thank God for the feeding tube diet, because every day I have to wake up at 4 AM to silence the beeping from that $^%&*&#(* pump, means that I have another day with Jack.
Today was our quarterly “meeting” with Dr. GI. Since the last visit, Jack’s been on the high calorie formula and tolerating it mostly well. However, he was also placed on the palliative care since the last visit, so I had to tell him all that.
(which, to tell you the truth, does not get easier over time…)
He’s gained a whopping 4 ounces.
We talked food, feeding, and football (we didn’t talk football, but I needed another f word to counteract the one I’m about to tell you I dropped). He wants to try feeding therapy again (even though we got kicked out, AND the kid is still aspirating. You know, because he wants to feel like he’s doing something.) He talked to Jack about eating and Jack told him he likes circle crackers (Ritz) and plain toast. Which is sort of the extent of his diet at this point.
I mentioned that I am still having trouble with the NoNo (g-tube). He tells us it hurts multiple times daily, and changing it requires all hands on deck, and a shot of tequilla (for me). I told him in January that there was something wrong. I called in April to tell him there’s something wrong. In July, I forgot to talk about it because I was too busy worrying about him losing weight.
He listens, and he fills the balloon up with water, and empties it. As if I didn’t do it right or something.
***This is the part of the story where you will read and see things that are not normal for me. I apologize in advance to Non, my Mom and to Jesus***
He tells me to get Jack up on the table.
Jack is no dummy. He has this figured out and yells, “NOT THE NONO!”
There are now 3 adults holding Jack down to take the NoNo out. Just take it out. This is not normal for my kid. He has been through so much, he usually just takes it like a champ, and we move on. It’s not like he’s not had the thing changed a few dozen times over his life.
He gets it out, and says he’s going to change it to a Mini instead of the Mic-Key (funny, right?).
So he starts…and he can’t get it in. He’s mashing on Jack, he’s trying really hard….
“hmmm, I see where this could be a problem, Heather.”
“Hang tight, Buddy…”
“Momma will get you a pony, the police car at Toys ‘R Us, and the Real Death Star if you just hang on…”
“WAHHHHHHHHHHHHHHHHHHHHH! make him stop!”
(mom’s heart breaks…)
At this point, he puts some giant tool down Jack’s stoma to keep it open.
And I lost my ever-loving mind.
Jack is screaming bloody murder. My poor, sweet girl child is sitting in a chair in the corner looking like she may throw up or cry, or both.
“Get Your F-ing Hands OFF OF MY KID UNTIL YOU CAN DRUG HIM OR SOMETHING!”
“Heather, calm down.”
Well, when he said that, I sort of saw like a prism of color, and then someone else took over my body. I remember saying things like, “Fix this mess you made, RIGHT NOW!” and something to the effect of “I KNOW HOW TO GET TO THE (bleepity bleeping) O.R FROM HERE!”
I guess my break with sanity caused him to pause, because he just up and left the room. I scooped up Jack and he was just broken. He was doing that sob where they literally shake and can’t catch their breaths. I was shaking too, but for other reasons.
In the end, we managed to get the original tube back in.
The plan is to get the Mini company to send their magical introducer (which is the fancy word for a paper clip that you shove inside the feeding tube to make it more rigid, which makes it easier to put in) so the doctor can replace his tube.
I stupidly asked what we would do if he can’t get it changed.
Surgery. They’ll put his tube in a different spot.
(which is when I had another break with reality, because OH MY GOSH why did we just go through all that instead of saying, “Gee, seems like this is a big issue, let’s schedule him for a little change in that site?”)
Non despised Jack’s feeding tube. At some point in each and every conversation she would say, “can’t we just take that thing out and hope he eats?”
Wednesday morning, Jack had an appointment with the GI. I can’t help but to think of her whenever we walk in there.
It wasn’t fun. He’s not gaining weight, actually lost some, and hasn’t grown since November.
FINALLY, after FOUR years of begging, they have agreed to change him to high calorie formula. As much as the kid begs for a cracker…A cracker…that’s not getting him enough calories by mouth.
We also discussed changing his tube from a straight G tube to a GJ tube. The difference is the part of the stomach in which the stoma is placed. With the GJ tube, he would not be able to aspirate from below (even though he’s not), and it’s more permanent.
Which would totally make Non so upset.
We have come to the conclusion that we would rather have Jack with us, than to risk his life. If that means we trach him or we change his tube site, we will. We didn’t pray for anything more than a baby.
We got Jack. We got Jack with every issue, every trial, every pain. If he had come from my own body, I couldn’t love him more. In our eyes, he is perfect. He has taught us how to love on a different level–a level where we would have never reached without Jack.
He is deserving of every chance we can give him…he gave me a second chance at motherhood, I will give him a second chance any time I get to.
Non would agree. I know she would…begrudgingly, and probably after I had to explain it a lot, but she would agree.
Jack had his big bad Nissen test on Thursday.
Upon arrival, we were met with the usual—”There’s our man, Jack” and other such greetings. It’s really awesome that he’s so unforgettable, but I’m not a fan of him being Mayor of the hospital.
After we checked in, got his magical bracelet, and shuffled down to radiology, we got put in a room. They wanted me to change Jack in to a hospital gown, which was about as much fun as wrestling an alligator rubbed with Crisco. Once he had been appropriately reprimanded, threatened, and put in time out approximately 98 times, he was ready to start the test.
They loaded Barium Boy with his favorite element. And we watched the screen. Jack actually thought that part was cool. He liked seeing him tummy on TV!
We tickled him, rolled him around, bounced him—and then, there was a little regurgitation in to his esophagus. Just not enough to say his Nissen is failing. The radiologist looked at me, looked at Jack, and looked away.
We all knew this was not the news we wanted.
I mean, I wasn’t a huge fan of having him have another major surgery.
But, the fact that his Nissen hasn’t failed means only one thing: he’s aspirating on his own secretions.
He is so talented, dontcha think?!
This is actually really not a good thing.
No parent should have to choose between a decent quality of life or a longer quantity of life for their child.
Non hated–even hate isn’t a strong enough word–Jack’s feeding tube. She would ask me constantly if we could “get rid of that thing” yet.
This would hurt her heart.
It sure hurts mine.
Jack says “truck” by substituting the tr- sound with an f. My niece says “faucet” my making the c sound hard like a ck. And I say reflux, like it’s the worst word ever.
Because, it is.
Jack saw Dr. Lung this morning. His recent testing from last month shows us that he’s probably aspirating more than ever, and also that he’s refluxing. A lot.
Which means that his Nissen probably has given up the ghost.
Which means we have some decisions to make. Decisions that I don’t want to make. Decisions I wouldn’t wish on anyone.
Her big concern is that, not only is he refluxing, but she feels he’s aspirating on just his own saliva. Not good. Really not good.
Thursday, bright and early, we are heading to MoMo. They are going to do an upper GI and a barium study (he’s going to be so happy to eat barium! He just loves that stuff!). If it shows that his Nissen is failing, we have to choose to either re-do it, or let it be. If we let it be, he will probably be forced to only eat pudding thick liquid the rest of his life. If we choose the surgery, there is no guarantee that it will even work….again.
So..that’s where we stand. Today.
Hopefully, I will have a better attitude tomorrow…after some retail therapy. I mean, the kid has to look cute at the hospital!
I’m going to start backwards, because that’s how I do things–the hard, arduous, backwards way!
On the 12th day of Christmas The Universe Dumped on Me:
12 loads of laundry,
11 cups of coffee,
10 trips to Kroger (because I can’t remember to get what I needed the first 9 times I went!),
9 degree weather in Georgia,
8 days until Christmas (Oh Gosh, I still have so much to do!),
7 Specialists this week,
6 brand new extension sets,
5 hours of sleep (I wish!),
4 cases of Pediasure,
3 more trips to Kroger,
2 fighting children,
1 life that I wouldn’t change for anything!
Merry Christmas to all, may you sleep through the night!
(written as part of the Special Needs Blog hop)
As a little girl, I absolutely adored Halloween.
(Remember the plastic costumes they used to have? You know, the ones that fit over snow suits?)
I remember my parents dropping us off near my grandparents house. We would Halloween all around the neighborhood, giggling and laughing. Some years it snowed. Other years it rained. It was warm. It was cold. It didn’t matter—it was Halloween!
I never cared thought about other kids. All I wanted to do was run from house to house and collect as much candy as my brown paper bag made at school would hold! I wanted to smell the fall in the air. Eat apples. Drink cider. Take a hay ride. I never worried about how there was that kid that couldn’t Halloween with the other kids.
Now, I’m that mom.
Halloween was hard!
Earlier in the evening, our friends stopped by with their children to take pictures and Halloween (I’m the auntie that buys McDonald’s treat books, because I think the kids need to have Happy Meals in their lives. Don’t judge.) Anyway, we were standing talking, and there was suddenly hysterical crying. Her littlest boy was on the ground, holding his face, and generally acting like the world was coming to and abrupt end. Jack was just standing. Not a tear shed. Not an “ow!” heard. Yet, sporting a rather large goose egg that was turning purple as we watched. Little Spiderman and Jack ran headlong in to each other. Both have decent shiners. One kid had an appropriate response. The other didn’t. It was beyond obvious.
My poor kid doesn’t feel pain.
Jack was dressed up like a storm trooper. S and J took him across the street to visit the neighbors. He was happy to bring home candy, but–come on–he doesn’t eat. What is he really going to do with a Snickers? He also wasn’t too thrilled about the other kids: some were too scary, others were too friendly.
My heart kinda broke.
Maybe we are done with Halloween. We’ll do our own thing. Carve a pumpkin. Make spookies for the house. Hand out candy to wayward children…
…and look forward to Thanksgiving.
Before I get in to what happened at the doctor today, let’s recap what’s gone on with our insurance (it’s good news for once!).
My good friend, Dawn, told me about her medical equipment company. She actually GUSHED about how wonderful they were, which kind of made me all warm and fuzzy (and jealous) inside. So, I called them. Within a matter of days, we were totally embraced and taken care of and Jack has a pump he can handle with much ease (it only weighs 14 ounces and fits in this little tiny backpack! It’s awesome!).
It still amazes me that everyone else made it so hard.
Today, we met with Dr. R to talk about a bunch of stuff. Of course, they did the weight and height bit..which we just won’t even talk about because I will cry. And if I start crying, this is going downhill really fast.
We are still on PediaSure for formula. He will be having another change to his G-tube as soon as the DME can send one. Basically, there’s a smidge of hope left that he will ever eat by mouth (totally). And even that hope is fleeting. He has also been started on a small dose of erythromycin in hopes that it will help his motility and delayed gastric emptying problems.
I fought. I really did. I just can’t stand that the doctors are giving up. He told me there’s not really even a point to thinking about the feeding clinic anymore.
I’m sick of bad news. I’m sick of being stared at. I’m sick of the smell of PediaSure. I’m sick of medicating my kid.
I need Santa to bring me a really good day.
(I really am sorry to complain. I’m just really tired, and kind of sad. Forgive me?)
P.S. Jack, for real—I know you’re totally not kidding. I knew you were really sick a couple days ago. You didn’t have to spike a fever (again) and scare me to death (again).Once again, we made our trek to the doctor’s office. Upon examination, it was determined that the Master Aspirator has been up to no good again. Further proof that we cannot really trust him to swallow anything thin, or eat too much of anything. We left with another antibiotic prescription, a band aid from a blood draw, teeth marks from where he bit me when she took the blood, orders to do 8 nebulizer treatments a day, and another pneumonia diagnosis. And to think, we should be in Pennsylvania today. Sigh….Jack, I do love you dearly. We’ll get through this together, OK buddy? xoxoxo
I’ve neglected writing..and I’m sorry. I do have valid reasons. Reason #1…we kept our nieces for the past 4 days! It’s been a little busy around here! We had a ton of fun…there were games and trips out and about (and my youngest niece slept on top of me for 3 nights….). It was so good to have all the kids together for more than just a passing visit!
OK..now, with that all said….
Jack’s sweat test came back within normal limits. Thank goodness. Unfortunately, this means that we have to come up with the source of aspiration…is he still aspirating even though his swallow study was OK, or has his surgery failed? So there will be more testing and more waiting. I do think if they could get to the bottom of all this he might actually EAT—and then we’d be making progress!
Today we saw the neurologist again. It actually went better than I had anticipated, being that I had the nieces and Jack with me (I took Sebi with me. He didn’t have a choice….). Dr P witnessed Jack and all his aggressiveness. He was in rare form! He changed his medications all around again. He decided to order an overnight EEG on Jack. This is a test to see if he is having seizures. They glue electrodes to his head and watch to see if any part of the brain is firing abnormally. Unfortunately, they will have to sedate him to get this done. No date set yet. It is however going to be at MoMo, so we’ll be there with all our friends again. Big Sigh.
So, afterwards, I was discussing with Sebi the possibility that maybe we should go ahead and shave his head again. As much as Jack HATES (and even that is an understatement) water, I can’t imagine picking the EEG glue from his head. I have a hard enough time with it when my grown patients need help! Anyway, I shaved it. Sebi was very much anti-shaving. I’m in the doghouse. I think he looks adorable. And besides, he wears a hat every single hour of every single day!
That’s it from here for now. Will let you know when the test is. Good news…we’ve already met our deductible for the year!!!