Jake’s Tummy-The Waiting Game

It’s a good thing I’ve recently done some soul searching lately about waiting (https://sistertwo.wordpress.com/2010/11/09/shut-up-and-wait/ ) because the word for the day has been “wait”.

We headed up to Jake’s follow-up appointment after his upper GI test(https://sistertwo.wordpress.com/2010/11/05/jakes-tummy/ )  and to find out what to do about his acid reflux. We left ourselves an hour and fifteen minutes for a fifty-five minute drive since I’d never been to this doctor’s office. We got about twenty minutes up the freeway and we stopped. It wasn’t the lovely stop and go of So Cal traffic. We actually parked the car and waited. For a half an hour. (So Cal friends, I KNOW! Aren’t I a wimp about traffic now?) Apparently, 34 cars got confused about which way they were supposed and ran into each other, causing a six mile back up on our cute little two lane freeway. So, we waited and waited, and after talking to a really nice guy in our doctor’s office, we were told to not worry about being late. Which helped, a little.  (By the way, no fatalies, only minor injuries in the pile-up, thankfully!)

We got to the office only twenty minutes late although we were ushered straight in to the room, we ended up waiting for various nurses and therapists and doctors for a total of about an hour. One would come in, ask questions, go away to consult with someone else and then come back twenty minutes later. We finally did get to see the doctor. Who is amazing and well worth the wait!

We already knew that Jake has acid reflux, but we found out that it is “high-grade” which means it goes up his throat really high.  Since my particular genetic make-up does not lend itself to medical good news and Jake got half my DNA, I was prepared for the worse case scenario in the “how to fix it” department. But, thankfully, we got lots of GOOD news. The acid reflux does not affect his pulmonary or respiratory system (heart and lungs for the medically challenged). I’m really glad I didn’t know that reflux can hurt those particular systems or the last week may have been a little harder to deal with! He also is not going to need surgery (my DNA is enraged over not having another surgery notch on their tiny belts). Surgery is usually reserved for those poor little guys who can’t eat at all or throw up so much they can’t gain any weight.

So, the part we are going to do is medication and feeding therapy. I’m currently waiting to see if our insurance will cover the meds. If not, I’ll spend several hours on the phone tomorrow to fight it out, or get them to cover another kind of medication approved by the doctor. We’re also waiting for an appointment to go see a feeding therapist who will figure out why Jake won’t eat chunky food. Is it that he can’t, won’t, is scared to eat because it hurts? Or, is he a stubborn little snot like his mama? Or a combination of all of the above? Then, we’ll see about adding chunky things to his food a bit at a time. It will also be nice to have someone else help us know how hard we should be pushing him. I tried giving him some mushy cut up banana yesterday and he gagged while the banana was still on my finger. When I got it into his mouth, he hung his head over his tray, mouth open, and shook his head back and forth until the banana fell out. If you’re laughing, you’re laughing right along with me! But, we do need to make sure he can graduate from high school having not barfed on his prom date because she wanted him to have a bite of lobster.

So, we’ll get him medicated and therapy-ed and then we’ll wait. While it is something that can fix itself after the medication and therapy, it doesn’t fix itself quickly. We’ll have at least another month before we know if anything is really working, maybe longer. The goal is to get the pain to go away and to get his weight back up to at least the tenth percentile from the third percentile.

So, lots of good news and having at least a plan-to-make-a-plan helps. And even though we are going to have to wait for this to work itself out, I’m really thankful for the worst case scenario to be ruled out. Since we’ve also set a good tone for discipline (https://sistertwo.wordpress.com/2010/08/05/shepherds-pie/) getting the behavior to change may not be as hard as it could be.

I can’t say thank you enough to all of you for your words of encouragement, love and offers of help. Even though most of you are (too) far away, your sentiments are flying across the miles and lifting me up. So, thank you! Our guest room is always open and ready for you, especially if you want to help me feed Jake. Just bring your toxic waste outfit and a barf bag. J

 

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10 Responses to Jake’s Tummy-The Waiting Game

  1. Illyse says:

    Please call or email if you want to talk or just need someone who has literally been there. We had Yoni on the acid reflux meds off and on from 13 months to 3.5 years of age. Feeding therapy started at 10 months and went off and on until he turned 4. I figured he would not need surgery and you were in for a similar course for Jake as we had for Yoni. Hang in there and try not to worry. Yoni is still at the 3rd percentile in weight, but he is happy, healthy and eats like all the other kids his age. They are not worried and no longer monitor him regarding eating, reflux or weight. I am certain Jake will be fine! Much love,
    Illyse

  2. jacquelyn says:

    Don’t you wish kids would get a free pass on health issues until they were at least able to talk? We’re working through the eating issues with our youngest researching tactile sensitivity, behavioral issues and more. It’s so hard to separate the medical, developmental and volitional aspects. You’d think food wouldn’t be so complicated!! I’ll be praying for you and your little guy.

    • I’d be really, really interested in what you find out in regards to the sensitivity spilling over into the behavioral. That’s probably been my biggest struggle. It’s so hard to know when he’s in pain, freaking out because he’s scared or if he’s just mad about eating. I’m praying that whatever I do right now doesn’t warp him forever! 😛

  3. Brenda says:

    Love you, love Jake, and laughed aloud at the Banana Incident. (It’s good to laugh now, because twenty years is too long to wait for this stuff to be funny.)

    I also was tickled at the image of your DNA wearing tiny belts … I got some of that DNA, but it seems to be content to just drag along being generally sore, achy, and riddled with minor issues that sound a heck of a lot like hypochondria except that they’re all real. Stupid DNA. We should kick its butt.

  4. cheekypinky says:

    YAY!!!!

    i like good news!!!

    what a relief, friend–
    i mean, it’s not all smooth sailing and a magical magicness cure,
    but it’s certainly not as bad as we feared.

    please film jake next time he does something like the banana rejection.
    something tells me that we’re gonna need ammunition when prom season comes to his life. 🙂

  5. Kelly Hudnall says:

    Mary, I’m glad to hear that your Dr’s visit went better than expected (0:
    I will be praying for precious, little Jake. That all sounds so frustrating and exhausting. We went through chronic ear infections with Luke until he was a little over two. At least every other month he had another infection which was the result of allergies or colds or…it seemed like he was sick ALL THE TIME. When he was 22 mos old he had already had 13 rounds of antibiotics. We finally had surgery for tubes in his ears and saw a complete change! I’m praying that through the meds and therapy Jake’s condition will rapidly change too! That’s so hard on mom and dad when your little guy is suffering. Love, kelly

    • Thank you, Kelly. It’s good to know that other people have gotten through the hard parts of their kids being sick. I’m so glad that you guys are doing better and I’m hoping that it’s get better for our little guy, too.

  6. Shannon says:

    This really is such great news! We’ll continue to pray for all of you in your journey, but we’re sooo happy to hear this news. 🙂

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