Infantreflux.org | Discharged and a Very Productive GI Visit

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June 14, 2007 at 6:40 pm #36793

Anonymous
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Quinn was discharged last night. But we stayed at the Ronald McDonald
house overnight until her appointment today. They are so kind there!
She is pretty much back to normal now.

Isn’t
it crazy how your problems just don’t seem that bad when you are in the
hospital? There is always someone who has it worse than you. So I
hesitated about asking the doc about Q’s walking because, well, at
least she can walk, right? I should be thankful.

We had a very
very productive visit with our GI doctor today. First her weight is
great. Right around 22 pounds, so she gained back those pounds she
lost. Right on for the g-tube!!! I’m sure it was cause we were pumping
her round the clock with tube feedings. We got her ph probe results
back. They are really bad. Her reflux is so bad. She refluxes over 24%
of the time in her lower esophagus. The doc said that he would like it
to be below 8%. In her upper esophagus it’s over 16% of the time. The
doc said he would like it to be around 2-4%. So it’s really severe and
this is only with the meds out of her body for 24 hours. Normally it
takes 72 hours to get prevacid out of your system, so she likely had
meds still lingering in her body. Imagine if we waited the whole 72
hours to do the probe. I’m not sure Q would have been able to tolerate
it. Her average time for refluxes was also 44 minutes. Meaning that it
stays in her esophagus for that length of time the majority of the time
she refluxes… which is really really bad.

AND! I asked Dr. S
about her walking. About her weakness on her right side and how I think
it looks like she sort of drags that right leg. How she falls ALL the
time and how she doesn’t seem to be getting any better like her
pediatrician had hoped for. How she is still so very wobbly on her feet
and she is about to be a year and a half old. And how she bumps her
head constantly and I’m getting worried about it. He is such a great
doctor. He said that it is not normal for her to favor that right side,
but even more abnormal was the way her foot stayed outward. She does
not bring her foot inward. It stays out… if you can picture that? I
also mentioned that at the hospital in Texas she was diagnosed with
hypotonia because her right shoulder girdle would give way when she was
crawling all the time and that we moved before we got the PT eval and
that her current pediatrician didn’t think it was necessary to follow
up with. He noticed that she does have a slight limp on that side as
well and that the leg is a little stiff. He ordered an xray of her hip
and lower extremities and made a referral for neurology. He thinks that
she may have had a little bit of hip dysplasia when she was born that
went undetected. If it is hip dysplasia, then it was very mild and
normally rears its ugly face when they start to walk. He said that if
that’s what it is, then it is unfortunate that it was detected so late
and that it can be much harder to fix when they are older. He said it
could also be a spine problem.But he wants to rule out any neurological
problem. So… I don’t know what is going on with that right side, but
finally, someone is listening. My family is thrilled because we have
all been getting even more concerned lately about it because she has
been walking for about three months now and she STILL looks like she
just started walking yesterday. But I did get a shame on you from Doc
because I didn’t mention it while we were in the hospital… where we
could have had neurology come and evaluate her while we were there and
now it may take longer to fix the problem. AH. my problems just seemed
so little that I didn’t want to bother all the busy doctors with
something that may be nothing. Lesson Learned.

And we have an appointment with her surgeons on July 5th. She will be getting the Nissen Fundoplication.

At
the Ronald McDonald house families asked about Quinn and why she is in
the hospital. I told them reflux.. And I hate it.. I get comments
like… “That’s it??? It’s not serious? Why does she need to be in the
hospital for that??? Does she have any other problems???” I always find
myself having to educate people how serious reflux can be in infants. I
told them that we were there in the NICU when she was an infant too for
reflux and heart problems. I don’t like talking with other parents
about her problems because nobody understands unless they have a reflux
kiddo too. I hate it though… because there aren’t very many with
reflux as bad as Q. That I’ve actually met anyways.

Welp,
better go now. This post is long enough. Thanks for all your continued
prayers and support. I don’t know what I would do without each and
every one of you guys. BIG GROUP HUG!!!

-Sarah

June 14, 2007 at 7:18 pm #36797

Anonymous
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Sarah,

Yay!! So happy Quinn is doing so much better!!!!! You guys could really use some great news!!! I guess the good thing is, dispite the results of her severe reflux, at least you know and can start appropriate treatment, right? I’m SO glad you are finally getting to the bottom of her walking issues. I know what a difference it makes when you have someone actually willing to HEAR you

I TOTALLY know how you feel about people down playing reflux. Granted, my daughter’s isn’t as severe as Quinn’s. but it’s so infuriating when you tell people you’re having a rough time and when they ask why and you tell them they’re like, ” oh, that’s not that bad”

Yeah it is!!! Unless you’ve watched a child suffer like that, you have no right to say a da** thing in my opinion My mother inlaw knows NOTHING of Kate’s struggles because all she’ll do is pass judgment and make me feel like I’m overreacting and dramatic. Yuck.

Sorry, I’m rambling. Anyway, good luck, and continued prayers from my family to yours on Quinns recovery and your strength. You’re incredible!!!!

June 14, 2007 at 9:13 pm #36811

Anonymous
Inactive

Hi Sarah,
I’m so glad to hear that you are home and Quinn is doing so well. It sounds like you have some great doctors working with her. I’m so glad to hear that someone’s finally listening about her walking issues. I pray that they will be able to find out what’s causing the problem and it’s something that is easily fixed. Good luck with everything, and I’ll continue to pray for Quinn.

June 14, 2007 at 9:15 pm #36812

Anonymous
Inactive

I’m so glad that she’s home and that you got some good information and a good plan. Yes, there’s nothing like a hospital visit to make you count your blessings.

I’m sorry to hear that her reflux is so bad. I have no doubt that Hailey’s is also a severe case, and wonder what our future has in store. I really hope that the surgery is the answer for her, and that the docs do all the testing beforehand to make sure that they do the right kind of wrap to suit her situation. I also hope that the neurology appointment goes well and gives you some answers that help progress her walking.

Poor Quinn! It sounds like she really must be uncomfortable with reflux that bad.

My mil gave us a terrible time when we were going through all the hard times with Hailey, and I felt a lot of blame come our way, and certainly no compassion or understanding. I posted this in another thread, but she was recently admitted to the hospital for chest pain to rule out a possible MI, and instead left with a diagnosis of probable reflux and a script for prevacid. She told dh that she couldn’t stop thinking about Hailey and how she must have been suffering. I think like most things in life, unless you’ve walked in those shoes, it’s hard to understand and not to place judgment.

Anyhow, I’m so glad that you have a plan and that Quinn has a future ahead of her soon without the pain of reflux. You must be so excited. You are a very strong mommy and Quinn is very lucky to have you on her side. HUGS.

June 15, 2007 at 5:02 am #36827

Anonymous
Inactive

Great news Sarah. Hopefully this is the “big step” in the right direction. The Dr sounds great…a keeper!

June 15, 2007 at 9:49 am #36841

Anonymous
Inactive

Great news!!! And, don’t feel bad about not mentioning the walking thing while in the hospital. I think you had enough on your plate at that moment, and it makes since that with the other kids around you all being so severe that you wouldn’t necessarily want to mention it at that moment.

She is still young, so I’m sure they can do what they need to do to correct her walking. It’s good that you have such proactive doctors. I wish my ped would listen to me better. He is kind of the type that thinks he has all the answers We’re currently searching for a new one.

Hang in there, and good luck with her upcoming surgery! I will keep you all in my prayers for a successful surgery.

Take care

June 15, 2007 at 9:51 am #36842

Anonymous
Inactive

Oh, and Claire,

Do we have the same MIL??? Mine thinks I cause all of my babies’ colic and reflux because I choose to breastfeed. She’s from the old school and thinks formula is better than breast…everyone is entitled to his/her opinion of course, and there is nothing wrong with formula if you choose that route, but who is she to tell me I’m wrong to breastfeed my babies and THAT is the reason they have colic/reflux?!?

June 15, 2007 at 10:36 am #36849

Anonymous
Inactive

OMG, I could go on a HUGE rampage about my MIL. ……..Yuck is really the only word I have to describe her……yep, that’s it. She’s showing herself here with the dreaded husband next week. Double yuck. Now hear me when I say that I think grandparents are soooooooo important! I want Kate to have a relationship with her no doubt and definately DON’T want her to have an inkling I can’t stand her snooty grandmother. But that doesn’t mean I have to like her or walk on eggshells wondering if she’s going to, surprise, surprise, COMPLETELY disagree with my parenting choices! They truly drive me crazy. Every time they’re here I feel like I’m on the edge of a cliff………ready to push them over!!!!! Sorry, we’ve just had a REALLY tough ten year relationship. Sorry again, this is so off topic. I’m done, and I feel better!!!

June 15, 2007 at 10:37 am #36850

Anonymous
Inactive

so glad that Quinn is doing better and hopefully you guys will have some much needed answers sooner than later.

June 15, 2007 at 10:41 am #36852

Anonymous
Inactive

Glad to hear that someone is looking into the leg issues… has she been assessed by a physiatrist? They are usually better than the PT to assess muscle tone and strength and i am sure they should be able to see if it is all a result of dysplasia. Most kids with these issues are followed by one… maybe ask about it? Sometimes the neurological route takes a long time… and seh may benefit from a consult with a physiatrist earlier? just a suggestion

On the pH probe – poor girl… i have heard that doctors do not like to see refluxing at less than 4ph for more than 4-5% of the time.. i cannot believe she is at 25% of the time – is hte pH always lower than 4 during those times? Sorry she needs the fundo…. is she going to have it laparascopically or open procedure? I will be praying for you guys!

June 15, 2007 at 12:05 pm #36857

Anonymous
Inactive

It does sound like a very productive visit!!! I am so glad you found someone to listen to your concerns and is working to get it figured out!

I am so happy she gained her weight back! I pray she continues to improve!!!!!

June 15, 2007 at 1:06 pm #36865

Anonymous
Inactive

Also, did she ever have a swallow study? if her numbers are indeed in the 25%, then my first concern would be aspiration here… especially since she seems to be sick a lot. What did the swallow study show?

Also, did they discuss a GJ tube and being NPO while you wait for the fundo? Sorry about the questions… just some things that have been discussed in other board before the fundo is actually done

HUGS

June 16, 2007 at 7:42 am #36938

Anonymous
Inactive

Sorry, again off topic but aplogies for my MIL rampage. I was feeling really guilty lying in bed last night for saying those things about my MIL it’s just been really hard. Also, so sorry it was completely off topic.
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