Menu Close

In Which I Whine Instead of Being Forever Positive and Grateful

This stuff always happens to me. No, really.

Remember the other day when I took Apollo to Dr. O for his cough (because our marvelous Dr, Dr H was out?) well, I never did tell you about the rest of the day. Why? Because I was worried about my son and worried about the medicine prescribed. So here is the rest of  the story.

We left the doctor’s office and headed to the grocery store where our pharmacy is. I went and checked on the prescription (which the doctor had faxed over) and was told it would take about fifteen minutes. So I wandered around the grocery store with a sick, fussy, coughing baby (garnering many, many dirty looks), a wild six-year-old named Tucker, a mellow seven-year old named Hezkekiah, nine-year old Jubilee and ten-year old Kalina. We wandered around the store and picked up a few essentials (hummus, baby food, doughnuts). After fifteen loooong minutes (it was lunch time, Apollo was tired, the kids were  hungry) I headed over and our prescription was ready. Thank God for small favors.

When I went to pay for the prescription, it wasn’t the cough medicine, but more lansoprozole, Apollo’s reflux medicine. I had told Dr. O that the pulmonologist wanted him to take it twice a day until his surgery, so we’d need a prescription for more or we’d run out too soon. She assured me she could change the prescription. And here it was.

“Okay,” I said “I’ll take this, but it isn’t the prescription I’m here to pick up. I’m here to pick up cough medicine.”

So the pharmacist goes to check and there is no prescription for cough medicine. “I’m sorry” she says. “You’ll have to go check over at the other counter”.

*sigh*

So I get in a new line, at a new counter and wait my turned. All the while my kids are getting hungrier and my coughing baby more tired. I get to the front and am told there is no other prescription for Apollo. So they call the doctor’s office and after several minutes I’m told, “They’re going to fax the prescription over, but they’re just waiting for the doctor’s signature”.

Doctor’s signature? I was in her office half an hour ago….Having no idea how long it would take, I headed home, prescriptionless and decided to return later in the day. It’s fifteen minutes to the store from our house, so later that afternoon I left my kids at home again, drove half an hour (round trip) to pick up a prescription that ultimately I decided not to give to Apollo. gggggggrrrrrrrrr.

Fast forward several days to when Apollo is our of his current prescription for reflux meds so I open the new bottle. And find to my surprise that Dr. O simply changed his prescription to 30 mg instead of writing a prescription for twice as many 15 mg capsules. This meant opening a capsule of medicine and literally trying to pour half of the little while balls out for him to take in the morning and saving the other half for his evening dose. And of course this happened on the weekend, so I couldn’t call the doctor and get the prescription straightened out until Monday morning. I suppose you could blame me for not checking the bottle as soon as I brought home, but really, he’s been on the medicine for ten months, it never crossed my  mind I needed to “make sure”  it was right. And did I mention his regular dose totals $190 a month? And we just doubled that. Thank God for health insurance and $15 copays.

So, we get through the weekend splitting and spilling white reflux balls (which must cost about a buck a piece) all over and trying to get the right amount in Apollo’s mouth. Monday  Chuck picks up the 15 mg capsules.

Saturday night, I notice Apollo doesn’t cry though dinner. He always cries through dinner. Always. Sunday we get through our meals without tears. And again yesterday. It suddenly dawns on me…we just doubled his reflux medicine and he is no longer screaming through meals?! You mean, we very  possibly could have given him more before and not suffered through Every. Single. Meal? He’s suffered. I’ve suffered. The whole family has suffered (it’s a bit difficult to have a family meal with a screaming/thrashing baby or toddler), day after day.

Yes, I’m thankful his mealtime crying seems to have diminished (but afraid to get my hopes up too high- this has been a major stressor for the past year)…but really, to make him suffer another 10 months because his dose was too low? That’s half his life. In the beginning I didn’t think he had reflux, in small part because putting him on it didn’t help his eating or mealtime crying (though I admitted he must have reflux when after two months we took him off and he arched his back and screamed like a banshee during the day).

Yes, I could just be thankful and look at this through rose colored glasses aren’t-we-happy-he-has-some-relief-now…but really, I’m  tired of him getting the short end of the stick when it comes to people in the medical field really listening and following up on him. He has suffered every day of his life and lot of it could have been avoided or lessened.

I know I’ve blogged about his mealtime tears at least three different times. Here he is in: January 2011 and April 2011. I know I posted photos of him recently crying during a meal as Jubilee tried to hold him, but I couldn’t find it.

Why didn’t anyone raise his does earlier when he wasn’t getting any relief? Why?

Loading

19 Comments

  1. Emily from NZ

    Wow. That is crazy! Poor Apollo!! I guess the trouble with having two diagnosed issues, is trying to figure out which issue causes which problems. No one could have known that the reflux was still causing problems, with the arch diagnosis the doctors would have put his swallowing difficulties down to that. At least he has relief now. I’m praying that you and Apollo have better luck with doctors, pharmacies, prescriptions and medications 🙂

    • bakersdozenandapolloxiv

      Emily, the pulmonologist has always believed that the reflux was a symptom of the problem, whereas the ENT believed it was the problem. Chuck and I have always wanted to know WHY a ten month old (that’s when he was diagnosed) would have such severe reflux…it just didn’t make sense unless something was causing it. And I CAN’T BELIEVE he’s suffered another 10 months when he could have had relief.

      http://www.bakersdozenandapolloxiv.comwww.littleearthlingphotography.com

      • liz

        Prevacid is usually an extended release med….i know someone mentioned otherwise…i may be wrong that there is an immediate release version…it would not make alot of sense if he was on it daily long term to have an immediate release…they make a 24 hr extended release…i know u said he takes it twice a day i think?

  2. liz

    Oh Renee….you sound just like me..or “us” now…we are ALWAYS in the exception box…with side effects with meds ” only 1 in a billion” we are that 1….97% of the adoptions at our firm are successful…we have had 2 fall through or disrupted….and I could go on and on..and on…

    Oh Renee the though of you and those Prilosec balls or whatever they were..you can’t open that capsule and just “split the dose”…the coating is part of the mechanisms in which the med is released….Bless your heart…i bet you called and they told you it would be fine….i won’t even go there…I am suprised that when Apollo didn’t have any relief they didn’t suggest increasing the dose. You have so much on your plate it would be alot to expect you to ask if the dose could be increased like I would have thought to. you however are not in the medical field..however i do think you may deserve one of those honory diplomas they give celebrities…AT LEAST ONE OF THOSE! LOL

    I know it is a pain but can you reply and let me know when Apollo surgery is. That is if you have shared it before. Brad(husband) has asked me several times when the surgery is and I would like to mark the calandar. If it is private that is good too. I think March?

    Hang in there. So glad he is getting some relief as bitter sweet as it is that he suffered those months that he may or may not have had more relief.

    Prayers:)

    • bakersdozenandapolloxiv

      Liz, I found your comment interesting, because you made it sound like we shouldn’t ever open those capsules and give him the little balls (it’s lansoprazole)…but that’s how we always give it to him. He’s always been prescribed 15 mg in a capsule that we were told to open up and put in food for him to eat (he takes it in nut butter). I’d love some clarification on your comment.

      • liz

        It’s hard to “play nurse” over the internet…my first instinct is to say “do what teh Dr said to do or better the pharmacist”,,but we know you haven’t had much luck with that. Do they make a that dose in a liquid? I will just say anytime a pill is packaged so special as to have little balls inside a capsule…well anything you do to alter it will compromise the release and absorption of the med…we give meds through tube feedings and always get liquids when possible for meds like that. It is not a simple as say crushing a pill although I have opinions on that too:)

        Thanks for letting me know when Apollo surgery is. Again I am not a pharmacist I only know what I have learned over 15 yrs of nursing practice..There is just no way to half a dose accurately with those balls…i can’t believe you had to do that…glad you have the right dose:)

        • bakersdozenandapolloxiv

          Liz, couldn’t you and your brilliant doctor husband just move here for a year or two…just until Apollo’s health issues are resolved?

      • liz

        Ok I did a very quick research on prevacid. It says if it is an extended release(sustained release etc) it should NOT be opened…however, if you HAVE to you can open it and put in say pudding or your case applesauce( dairy free)…so it is ok just not optimal. Also it says you could disolve in 2 oz oj,apple juice or tomato juice….they also make a powder and a disolving tab. The disolving tab is prob super expensive but maybe your co pay will cover it?grrrr my “S” is barely working on the computer..lol

  3. jo

    Ugh that is horrible… and a reason to feel like complaining! I mean really, its hard to be optimistic full time. Dont feel badly to complain here, your blog posts are usually uplifting and optimistic. I am so sorry he has gone through this. No matter how proactive parents are, there are things that fall between the cracks for our children’s health and it is so frustrating. I have that happen with myself in small ways, and it is usually because the doctor wont listen because unlike Apollo, I can describe my exact feelings. I do hope that he continues to be able to eat leading up to his surgery.

  4. Stephanie

    I so hear you! I am fighting my own battle for my son to be diagnosed after TWO YEARS of diarrhea. Our most recent issue is that a doctor prescribed Prevacid to a child that cannot have milk, soy or egg. NO ONE caught that the prevacid has lactose. *sigh*

    • bakersdozenandapolloxiv

      Stephanie, so frustrating! Prevacid is what Apollo takes, but we were told the small amount in the capsules would be fine…

      • Stephanie

        Right, I’ve found that it is generally accepted as an “amount that is tolerated” but it was not tolerated at all by Xander. He quit talking, PERIOD. He screamed and moaned and NOTHING brought him relief. Finally *I* discovered it after talking to another mother whose child cannot tolerate the lactose in Prevacid either, and we saw a dramatic difference in his behavior/reaction in just a few days.

  5. amanda

    I wanted to mention that if opening the capsules and giving them to him is a huge pain (we did that for awhile- they would spill all over the counter, etc), they also come in dissolveable tabs (solutabs) that we mix with a tad of water in a syringe and then you can squirt it right into his mouth (or feeding tube, in our case). Our son is 3 and takes 30mg prevacid 2x day. We tried other PPIs that didn’t help at all.
    BTW, we were told that it was fine to open the capsules and mix them into applesauce or something, but the only thing that really has worked for us is the solutabs. Prevacid is not time delay released, so the outer lining is just filler, not part of the med.

  6. Heather B

    eh, I think you’re entitled to some well placed complaints from time to time. Other than his amazing survival his birth story this poor kid has not had a very rose colored health experience so far. I took prevacid when I was on bedrest before my preemie and it was a miracle drug! I hope this new dose really makes life better for Apollo.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.