Tuesday, July 2, 2013


Ok, so I keep telling myself I need to sit down and type up an update because every time I fall asleep I review everything and work out what I will say, and then the next day something changes.  So, I need to just get this all out and catch everyone up before it all changes again!

Last week on Monday, Ryan had his pulmonary hypertension clinic appointment where we get to meet with the cardiologist and the pulmonologist in one sitting.  This would be the perfect scenario if we could just get his GI doctor in there as well.  The cardiologist went over the echo from the previous Friday, and said that his numbers looked better and more normal (YAY!), but didn't give me much information other than that.  So I asked him, "Did you guys get a number, because in March the number was 30."  And he goes, "Oh, yeah.  It was 24 this time."  Apparently this is more in the normal range, which is good news, but I liked it a lot better when they used to tell him his pressure numbers were "unreadable".  So there won't be any change in those meds and we will follow up again this month.

The pulmonologist was Dr. Y who has known Ryan forever.  She had mentioned at the last clinic in March that this would likely be the appointment where we could start talking about weaning him off oxygen.  Unfortunately, that wasn't the case.  I told her how he still desats at night if he gets his cannula prongs out of his nose, and she asked how low he dropped, and I told her 89/90.  Dropping that low still means that he's not ready to be without it.  She said that since his weight gain has been good, that and time should've done the trick by now to help heal is lungs, so she's surprised he is still desatting.  Her theory is that his reflux isn't under control yet.  I told her how he wakes up in the mornings very congested and mucusy, and she said it's likely from refluxing overnight.  To me it seems more like a respiratory thing, maybe allergies? But I'm not a doctor. ;)  So, she said to talk to our GI doctor about trying a medicine called Reglan, otherwise, if that didn't work, we might have to talk about a fundoplication which is a surgical procedure where they sort of flip the stomach upside down so that the esophagus is facing down instead of up and it makes it physically impossible to reflux/vomit anymore.  I'm really hesitant to do that one because I've heard a lot of parents say from personal experience to try to avoid it if at all possible. 

As I was walking out with Ryan, I just happened to run into our GI doctor in the hallway!  So, I told him about their concerns with the reflux, and he said he agreed and would call in the reglan right away.  I told him not to rush because we were heading out to our Palm Springs mini getaway straight from that appointment.  While on vacation, I did a lot of research on the side effects of reglan.  I remember they've mentioned it in the past, but didn't want to give it unless it was absolutely necessary because it can have some pretty nasty neurological side effects.  I asked people in my preemie mom group, I asked on the Mommies of Miracles Facebook wall, etc.  The majority of people said that they would avoid reglan if at all possible.  Many of them also mentioned omeprazole as a great alternative to try.  Wednesday morning, while we were eating breakfast at the hotel, our GI doctor called me to let me know he had sent in the prescription for reglan.  I told him my concerns and asked if we could try omeprazole, and he said it would be the same as the med he is currently on, lansoprazole.  The -prazole ending means they are in the same class of medicines and they do the same thing, they are both acid blockers.  So I said ok, go ahead and send in the reglan, and then of course I did more research.  I really have to thank my preemie mom support groups because I don't know what I would do without them.  Finally, we decided that the neurological risks were too great to try reglan without at least trying the omeprazole first.  Yes it may be the same class of medicine as lansoprazole, but who knows if his body has become immune to this med and the slight difference could make a change in his reflux.  It's worth a shot.  So, I called the GI doctor back (he seriously must hate me by now) and had him change the reglan to omeprazole.  So, please cross your fingers and say a little prayer that this medicine helps his reflux so his lungs can finish their healing!

In the meantime, as we wait to see that improvement, we made an appointment with the NP and head GI doctor at CHOC for next Monday, just to get another set of eyes and brains on Ryan in case there's anything we are missing.  Then we have the long awaited neurology appointment on Tuesday.  Should be lots of interesting things to report next week!  Thank you for continuing to keep Ryan in your thoughts and prayers.

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Markelle said...

Trust your gut, and avoid reglan if at all possible!! Omeprazole was a miracle drug for my son when he was in the same boat, so it is definitely worth a shot!! :)

Kenner said...

I have absolutely no experience with most of what is in your post, but did want to throw something out about allergies in children - my son had a persistent cough so the pediatrician sent him to an allergist, who said that it's EXTREMELY rare for allergies to manifest in anyone before 3-4 years old (in my son's case, it seems that his silent reflux causes irritation which makes him cough. Who knew reflux could present as a cough?) In any case, it might be a different situation with preemies, but if nothing else I thought it was interesting to learn (because I feel like SO MANY parents are always saying that their toddler has allergies, but I guess that's almost always not the case!) :) I hope the omeprazole helps Ryan!! (Oh, and that your pharmacy is better at compounding it than ours was. SO MANY STUPID ERRORS!!! I was glad when we were finally able to discontinue it, though I was so thankful for it when we needed it!) :) Good luck!!