Thursday, December 6, 2012

And the NICU roller coaster hits a a new low...

So Sunday night I go in for a bottle feed after seeing two separate wheezing/aborted bottle feeds/crying episodes that had caused some of my anxiety in my previous post. I had a message on my phone that earlier in the day her airway had seemed "more reactive" and they were considering putting her back on steriods. When I walk in the room I see she is back on oxygen. And not the low flow kind either.

I lost it. It had been building for a few days, and I could no longer clamp it down. The nurse must have thought I was usually like this. It embarasses me to get so emotional, but I guess I should be proud that I kept it together for over a month of this mess. I almost had to call my work and ask for more time to come back from my lunch break because I couldn't pull it together.

So the next day I am armed with a dozen questions about RAD that all boil down to "what the hell is happening to my daughter!?"  I wait at the hospital 2 1/2 hrs in the morning in vain, because the doctor was too busy to talk to me. I go home to relieve my husband so he can go to work, and I'm unable to sleep. I exhaust my poor mother on the phone pouring out my frustration and fears.

But then the doctor calls me and has exciting news. He thinks she may not have RAD at all and have a "floppy" upper airway that is the cause. It could have gotten irritated by us upping her bottle feeds, so tomorrow he is having an ENT (ear/nose/throat) doctor do a bronchoscopy to examine her upper airway for any problems. He also thinks her reaction to her meds is not as typical as it should be if she really has RAD.

I realize that if she has one of these problems it could me an a G-tube, but at this point I'll take it if it means she can breathe better without all this reactive airway mess. I'm actually excited that something may be wrong with her upper airway, believe it or not. But the ramifications were less scary by far, so I had my fingers crossed for the next morning. I did six hours of research and was armed with the following list of questions, of which I was well educated on each and ready to expand upon if needed:

1. Did the ENT find trachomalacia/laryngeomalacia/pharyngomalacia or subglottic stenosis?

2. Would you classify it as mild, moderate, or severe?

3.  Is it congenital due to her prematurity, or aquired from the pneumonia/RAD? Perhaps a mix of both?

4. What would be the most conservative to the most aggressive treatments, and what are you recommending? (I had extensively researched each of the following treatment options)
  • Growth/time to allow her to grow out of it. That would mean a G-tube.
  • Aortoplexy. If you do an aortoplexy do you also do a concomitant intraoperative bronchoscopy to verify placement?
  • Stents: If I am understanding correctly this is a temporary measure for a few weeks and not a viable solution.
  • Slide tracheoplasty. Probably a more extreme option not necessary for her issue.
  • Supraglottoplasty
So I am ready the next morning. The doctor finally calls, and to my dismay tells me the ENT found nothing. Dr. Treen wants to do a G-tube with a Nissen fundoplication.

My heart sinks, but I had a list of questions for that possibility too, because while I am onboard the G-tube bandwagon I have reservations about the Nissen.
  1. If she is likely to outgrow reflux, isn't a Nissen a permanent solution to a temporary problem? I don't see that a reversal/take down procedure is ever done, and I don't understand how babies can "outgrow" and the Nissen can "relax" physiologically. I didn't really get this one answered directly because she expanded upon the answer and I got overwhelmed.
  2. Aren't fundos done in the first year often redone due to failures? Yes, but does it matter if she really needs it?
  3. Has she seen a GI specialist to confirm the necessity of this and rule out other issues?   What about a PH or impedence probe study, upper GI series, manometry to rule out motility issues? She answered no, that she sees no need to based on what we already know.
  4. Do you do one without the other often? (In the past they were always done together, but new research has them being done less and less in conjuction and dependent on the individual child's issues.) Dr. Treen confirmed she has done her research by telling me she does them together less and less, but is certain that in Tara's case she needs both.
I thought I was prepared, but the doctor's answers made my head swim a bit and I was more than a little upset that my daughter may now need a major surgery. She was so certain that Tara needed it. But her explanation left me a little confused, and it wasn't until hours of thinking and research later I could understand why and how to rephrase my questioning. It seemed that folks who have Nissen's done only sing the praises when their kids had severe reflux with the typical vomiting symptoms that it cured. And they typically get them at 1-2 years old after other medical management has been tried and failed. My daughter doesn't have the typical GERD symptoms, but I suspect and have not had the doctors confirm that her respiratory issues are very GERD related. If so then I am on the Nissen bandwagon. But if not, it seems like maybe too major of a step based on a possibility and not an inevitability. The diagram below trees the expression of GERD, and I can checkoff next to nothing on the left side but at least 6 on the right side in my amateur assessment.

The doctor seemed to be saying that because a G-tube increases the risk of reflux due to the balloon decreasing stomach size and the swallow study showed that thin liquids (i.e. formula in her g-tube diluted by gastric juices then refluxed) cause her to aspirate, then we should do a Nissen  fundo to prevent that from being a concern. But in my mind if she is not currently having silent aspirations and severe reflux issues, it may be a little too prophyalactic.  But then again is the risk of a major aspiration and repeat hospitalizations for aspiration pneumonia to high of a penalty for failure in this decision?

So here is my new list of questions. I am trying to not be "that mother" that asks idiotic questions based off Google and doesn't listen to an experienced and well educated doctor. I just want to make an informed decision and understand it well, and Dr. Treen seems to recognize that when I asked for some time to discuss it further with my husband. She assured me it is a decision she does not take lightly. I'm sure the answers to some of the first questions will answer the latter, but I'm having trouble wrapping my head around it enough to make it less redundant.

Questions for the Doctor:
Bottom Line; If her respiratory symptoms are already significantly affected by GERD then we are on board with the Nissen Fundoplication:

1.    Did swallow study confirm GERD and not just aspirations during feeding or has that diagnosis been confirmed here due to respiratory symptoms? Would you object to an impedence probe test before we go ahead with Nissen?

2.    How controlled do you think her reflux currently is on Prevacid and positioning? Do we think that silent/secondary/reflux aspirations are strongly related to her RAD symptoms or solely aspiration during longer/more frequent feeds we did recently?

3.    Trying to understand why bottle feeds create the exacerbation…..what is the RAD reacting to exactly if ENT says upper airway is normal and no reflux irritation? Can you confirm that the respiratory exacerbation we were seeing the past few days was upper respiratory and not lower? Do you deduce it was reflux related?

4.    It seems like we are doing this prophalactically for what could occur, and not based on confirmation that she has already been having silent/secondary/reflux aspirations. Is that incorrect?

5.    Have we ruled out a motility problem/pyloric stenosis by symptoms? If not don’t we need to do a gastric emptying study, so that we’ll know if a pyloroplasty is in order along with the Nissen?

6.    Why do you think a GJ tube is a bad alternative to the Nissen in her case?

7.    How experienced is the surgeon that will be doing the Nissen/G-tube? Can we meet them? We would like to discuss the AMT Mini-One button option as an alternative to the Mic-Key and whether laparoscopy is possible because of her respiratory status.

8.    How will we know if Nissen was successful? Since she has atypical reflux symptoms, will it just be lack of repeat hospitalizations for aspiration pneumonia? (Most people singing the praises of fundiplication are those with typical vomiting behaviors that are seen to reduce, which she doesn’t really seem to have)

9.    How exactly does a Nissen “relax” and a baby “outgrow” it? What happens physiologically?

10.  With RAD, is it adversely indicated if I even take her for a short walk in the stroller outdoors with no people contact? Should we never leave the house except for Dr. appts?

11.  Why are the doctors and nurses so much less alarmed than I am at how low her oxygen dips during crying fits/wheezing? Do I need to drop everything with my son and spend however long calming her down every time?

Some of the research I did came up with these two tidbits that made me think she already has reflux respiratory issues that are signifcant, and even if that is not the case she could be at high risk from her RAD treatment meds and tachypnea episodes.
·         Many of the modes of pharmacotherapy for a reactive airway, including beta adrenergic agonists and xanthines, can lower LES tone, thereby increasing the propensity for reflux. Also the increased negative intrathoracic pressure from coughing and wheezing and the increased negative intrathoracic pressure from hiccups and stridor can exacerbate reflux.  Winter HS Gastroesophogeal Reflux. Comprehensive Therapy 1989; 15 (2) :  6-10

·         45% of coughing reflux episodes were non-acid reflux. I wonder now how much of her coughing is because of reflux instead of RAD. And non-acid reflux will be missed on a PH probe test but the newer Impedence probe test will capture it.

 I've probably been to 10 times the links I'm including below, but these are some easier to understand articles and anecdotal stories that were helpful:

 I think Google should give me an honorary doctorate.

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