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.
Two days after Christmas, we packed up everything we owned and moved.
To tell you it was fun–well, it wasn’t.
However, in true Hopeful fashion, we’ve had some moments that will make you shake your head.
We have a chicken. Her name was going to be Attila the Hen, but she’s named Betsy…
On the day of the closing, S and I left the kids with P and headed to the lawyer. As we made small talk, she told us that she was really happy we were taking the chicken. (I’m thinking, “what?”). We started signing our lives over to the bank, and after giving us the keys, we were told to hang on for more instructions.
Instructions for what, you ask?
For Betsy the Chicken. We were told how to feed her and care for her and…I kid you not…how to talk her off of the fence so she doesn’t jump.
She’s been a constant source of amusement for all, and apparently she is well-known around the neighborhood (as evidenced by Neighbor 1 saying: “Did you decide to keep Betsy?”). Actually, she is well-known all around our town because when I went to the feed store for her food, the man working asked if I bought the house where Betsy lives.
Who knew I’d inherit a famous chicken?
The house itself is great. I love it. It’s home. We have family here. I couldn’t be more pleased if I tried.
Jack has seen a few of his new doctors.
To say I’m delighted would probably be the understatement of the year! His GI here is a lovely woman doctor…she is gentle, kind, and doesn’t think that I’m crazy! She agreed with the plan to not feed him orally more than what he is doing now as it’s a risk for aspiration. She was just fantastic and I really think she wants the best for all of us.
Today we saw the new pulmonologist–which went a little less wonderfully. Not because I didn’t like the doctor. No! The doctor was a total Rock Star! He and I talked and discussed a TON of stuff. He thinks that to combat Jack’s apnea, we should have him on some oxygen at night (since he won’t tolerate the C-PAP). I couldn’t agree more, but the pulmo in Savannah was not at all for that idea. He would prefer if we didn’t offer Jack anything orally for a while until he can fully assess his airway and how much damage has already been done.
So we’re sitting there, and he decides to do a random pulse oximetry (it measure the amount of oxygen in your blood) on Jack. It was 90. Then it was 87. Then it was 90. Then it was 88. Then I almost passed out because it’s supposed to be 99-100. In the hospital, we like to keep our patients above 92. So this wasn’t awesome.
Jack’s overachieving self earned us a trip to the hospital for chest x-rays. He’s also getting a referral to the cardiologist because Dr. Lung thinks that maybe he could be having some issues there too. You know, because Encyclopedia Jack isn’t thick enough yet. Or something.
We’re also doing another sleep study in a couple of weeks to see if the oxygen will help at night. I’m hoping that we are finally getting to a place where we can keep him comfy and hopefully not do any more damage to these fragile little lungs.
Unfortunately, he did agree that palliative care was our best option.
The only good thing about that is that we get to go to clinic on preemie day so everyone wears masks and no one touches him too much.
J is happy as a little clam. She’s thrilled to be near her cousins! She’s loving being outside all the time. She and the chicken are best friends–so much so that the chicken follows her around and keeps trying to get in the house. J can’t wait for the pool to be ready and to start swim team. She’s growing up–she saved all her money for a year to buy an aquarium. Now that she’s met that goal, she asked to open a bank account so she can save money to buy…a house.
Yep, a house.
“Because, Momma, it’s stupid to rent. You’re throwing money away!”
(My little miser!)
I’ve missed you. xoxo
Usually, by this point in the year, Non was in her glory. She would get up early in the morning and work tirelessly…baking cookies. She would mix and stir and roll and cut until she had every square inch of her house holding boxes of cookies. I’m not even kidding. She would stuff her freezer with them, hide them in the attic, and store them in closets. All this preparation for the Christmas season. She presented families with plates of cookies for years, as a selfless act of love.
And heaven forbid if each cookie presented to us kids did not have the same amount of sprinkles on it…
This year is rough, I’m not going to lie. I miss her like crazy, and I am not sure how to go about moving without her. I mean, I’m still finding socks stuffed in casserole dishes from our last move!
And, much like my mother, and her mother before her…I love Christmas. I love to decorate. I love the smells. I love the food. I love the traditions.
I have a deep and abiding love for advent wreaths, chocolate Christmas countdown calendars, and snowmen.
This year is different. Everything I own is in storage. We think that we sold the Christmas tree at a yard sale last year, but none of us can truly remember if we did or not. I haven’t bought many Christmas presents, because I don’t know where I’m going to be living. I feel disjointed. And being the somewhat neurotic creature of organization and routine that I am, I then feel guilt. Guilt for not doing the right things or being the right mom…
Anyway, let’s not go there right now…I’ve got bigger fish to fry.
Friday, Jack had a procedure done to see what is going on with his g-tube. He’s been complaining that it hurts a lot, and I’ve had all sorts of trouble replacing it (which is not typical—I’m a super tube changing rock star!).
He wooed the nurses with his long eyelashes and dimpled grin. He took his IV like a champ, while we talked (and only one little tear escaped his eye) about his desire to grow up and be a StormTrooper. We kissed and whispered ”I love you” to each other over and over as the anesthetic took over his body.
Then I barfed in the waiting room (I’m sure you’re all super shocked by that).
Dr. GI came out and sat with me. We talked for a good while. He said his tube looks great. But the rest of his innards are a little wonky. He showed me places on Jack’s esophagus and stomach that have ulcerations (which he biopsied). He also biopsied a lesion in his small intestine. This was totally not at all what either of us expected—but Jack has always been our little enigma. If the answer is to be black or white, Jack will find a way to make it orange.
It’s a talent.
So, we now wait.
And I know, somehow, that in all this waiting—for the move, for the results, for my life to get back to “normal”—I am learning to be more faithful, more patient, more humble.
But, dang…it’s hard.
Just when I think life is…oh, I don’t know…somewhat OK—I get sucker punched.
Last week, Jack had a GI appointment. Sebi went with us to make sure I didn’t end up in jail. While talking (yes, JUST talking) and scheduling a procedure, Mr. Jack began the poop push. The kid is on several adult doses of laxatives a day, and he still produces rabbit pellets every 3 days. After pushing, and pushing, and making us all feel bad, he finally produced. Sebi left and I packed up the chair and the kids and got in the car.
We pulled out of the parking space, and Jack says: “MAH BUTT!” So I pulled back in. He produced again. Only it wasn’t pretty. I cleaned him, and we headed on. By the time we drove 3 blocks, I had to stop again. We got to TJMaxx, and I had to stop. I left TJMaxx twice. We also made deposits at Checkers, Burger King, an auto parts store, a McDonald’s, a gas station, and Kroger before we made it home. I had to stop and buy diapers and wipes.
I was crying–begging Sebi to call the pedi to get him in. Janson was crying from the toxic fumes.
We made it home in time for another round of “drama!”
I knew before we even hit the doctor’s office that Jack had strep. This is exactly the way he presents (some kids barf when they have strep, mine blows out his colon. It’s a gift). The doctor patted me on the back….and told me that I need to keep him homebound for school (which was kind of nice, because I was afraid she was going to be all about putting him in a real classroom!).
So I spent the last week in a fog of antibiotics, fever, and whining. And of course, Sebi was out-of-town. I was so tired and stressed at one point…I took a shower. A real hot, long shower. The one where you cry and talk to God and let it all out. I felt almost better until I went to wash my arms and realized I still had my bra on.
This week…J has it. Only she’s not as whiny and her colon is fine. Jack went to Dr. Lung today. He’s a hot mess. His lungs aren’t really getting better (not that they were really supposed to being that he’s palliative). She was hoping that we could make it through a season without steroids. That’s not happening. His lung function has decreased a bit. Not anything major, but enough to warrant upping some meds and changing others.
It’s such irony, you know. I sit there and talk about such heavy stuff with her, and Jack is smiling and laughing and yelling, “I LUFF OOO!” at her. Wouldn’t it be awesome if we could be more like him, and less like…a giant ball of worry? She suggested we enter hibernation until spring. Sebi and I are going to work on a plan where we don’t take Jack out at all, but I can still get errands and things done. We’re considering a clone, but I hear they’re expensive…
There is (hopefully) going to be some news out of Fort Hopeful within the next few weeks that will change the game all together. That’s what I am looking forward to. Hope is the only thing getting me through right now.
(I really do wish I could be open and honest with y’all. But I can’t for various reasons…don’t need to feed the animals! You’ll forgive me later, I promise!)
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 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!
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?)
Yeah, so that earlier post—I lied.
Yep, I’ll be the new Internet hoax.
So, shortly after I hit “post,” Jack was complaining about his “no-no.” I looked at it, and it was rather inflammed and oozy and his tummy was all bruised.
Sebi decided that we should call the doctor. The doctor told us to get on our ponies and get to the MoMo, where he would be waiting for us***.
We literally walked in the door, signed consent, and Jack was whisked away. They put him in a room, and (held him down while he was screaming bloody murder) changed his feeding tube, investigated for any internal trauma, and handed him back to me.
Dr. R doesn’t mess around! He also may have mentioned that perhaps Jack should remember this, so he doesn’t do it again. heh.
There ends my day. From that point on, Jack’s been on top of me. I’ll take the love.
*** Interestingly enough, it turns out if the doctor is waiting for you, things move way more quickly than if, say, you are waiting on the doctor.
Sorry for lying. I didn’t mean it! xoxox
Last night, Jack had wet through his bed, so at 11 we were changing his sheets. Sebi handed him to me to cuddle and replaced the wet sheet with a dry one. As I lifted Jack back into the Prison Crib, somehow the tubing got all tangled, and before we knew it–the tube was OUT!
OUT, I tell you!
Like, the button came completely out and was still partially inflated, OUT!
Someone, who looks a lot like my husband, said a few choice words, and then went tearing down the stairs to find me a syringe and the lubricant to get the tube back in. He flung stuff around, cabinets slammed, lights were turned on.
I sat with Jack, with my hand over his stoma, apologizing. It was an accident, but for some reason, it felt like my fault. I didn’t want to hurt him.
Stompy McStompALot buzzed back into the room with enough supplies to do surgery on my bed, and was breathing like he’d run a marathon. He was shaking. He was scared.
I was not. I was nervous because this had never happened before. I wasn’t sure Jack’s stoma was OK. I wasn’t sure if we should call a doctor.
I replaced the button, gave Jack some pain meds (he does not his tube being replaced—it hurts), and hooked him back up.
He slept. I held him and kissed his forehead. I cried.
We don’t understand, and we never will. We don’t know why God thinks we’re capable of taking care of Jack.
This morning, Jack woke up just fine. He gave me the sleepy, slack-eyed smile. He let me hold him for a minute and smell his head (which smelled a lot like PediaSure!) and kiss his sweet little cheeks.
It doesn’t matter that we don’t have the answers.