Remember my post about The Feeding Team? Well, we had that appointment today and are now scheduled for lots-o-oscopies. Also, I should clarify, as the appointment carried on, I learned that it wasn't so much a "Feeding Team" but rather more of a "Pediatric Airway/Swallowing/Voice Center" which really, when you think about it, sounds way more impressive than the Feeding Team anyway...
Sooo...
We met with a GI doctor first. Now, this is a different GI doctor than who we usually see, so I had to give him Dylan's whole reflux history. After hearing me talk (err complain) about the 4 different medications that we've tried thus far, he believes that going back to Prevacid is the way to go. He will try to work with our insurance company to get them to pay for part of the cost, as it's quite pricey. I am willing to try this again, as looking back, it seems to have been the most effective. (Read: At least with Prevacid I didn't get spit-up on over 20 times a day. Seriously.).
Next was the Pulmonologist, then the ENT doctor, and lastly the Speech Pathologist.
After meeting with each doctor and discussing the main concerns I have with Dylan, namely his difficulties with swallowing thin liquids (and everything that has been going on with that), in addition to the reflux, it was recommended that we have a swallow study done. While I am all for this idea, I must admit that we do have a small problem: that being the fact that Dylan has still not had much success with drinking from a sippy cup...or from anything for that matter. We were instructed to mix half applesauce/half water in a sippy cup (or half formula/half YoBaby), take out the valve, and just keep trying and trying and trying. And we have less than two weeks for Dylan to get the hang of it. Hm...
It was also recommended that Dylan heads back to Boston for a "surgical procedure". Namely, an endoscopy (for his stomach and digestive system), a flexible bronchoscopy and a rigid bronchoscopy (for his throat, airway and lungs). He will need to fast and will be put under general anesthesia for this procedure.
Ugh. I have mixed emotions about this, I think. On one hand, I feel quite positive that we are moving forward. I really am. Maybe they will find a problem and will be able to fix it. Yet, on the other hand, there is certainly a large possibility that there is nothing at all amiss with my little guy...and that I will have put him through all of this for nothing. Maybe I should "wait and see". And hope that he grows out of it.
But how do you choose?
Gosh. Am I missing something? I just wish so badly that I had this super-strong Mother's Instinct or Intuition...or whatever it's called. That way I would know for sure that I'm doing the right thing here.
11 comments:
Ugh. What a lot to swallow.
LOL--sorry...couldn't resist.
I hope the Prevacid does the trick! That's what B just started last week. Insurance pays for ours, though, thankfully.
B is having a swallow study done next Friday. He only does well with the sippy if the liquids are thick. So I'm bringing some Thick-It to the appt. Have you tried that? I bought it OTC at the Walmart pharmacy. I add it to his milk.
But why can't they do the swallow study with a bottle? Babies who are WAY too young for a sippy cup have swallow studies done.
we had two swallow studies done with whitney with a bottle before her heart surgery (and both were highly UNSUCCESSFUL because she was not even able to take anything from a bottle, she was so weak, and only taking nutrition through her ng tube)- I had to wear a lead apron to stand there and hold the bottle for her to try to drink.
as for the "oscopies" --- we had whitney's tubes put in on friday and they also did a bronchoscopy + a laryngoscopy. The entire procedure took 15 minutes or less, and she was under general anesthesia. she was NOT HAPPY at all when we went back to see her after surgery, but she ended up falling asleep on the way home and when she woke up a few hours later she was all smiles and you wouldn't know a thing had happened earlier (other than the fact that it became VERY obvious she could now hear).
I have a feeling your mommy instinct took you to see "The Feeding Team" and if they are recommending these things, then maybe it would help???
I hope the prevacid will relieve the spit up for you!!! best of luck with all of this!
Just wanted to add- with the Prevacid- I sold it for 5 years and I had a feeling your GI would put Dylan back on it. It truly is the best medicine for reflux, not just because I sold it but so many studies show it's efficacy. Now, both my girls were on it and Ainsley was my bad refluxer and she took 15 mg solutab 2 times a day. Yes, she took the adult dose and that did the trick. So I don't know what they have Dylan taking but it is a very safe drug so if he's only taking 15 mg he may need a stronger dose. Just a suggestion- of course I'm not a doctor but I knew many docs that did this and like I said it worked for Ainsley. I hope you can come to a clear decision with all of this!
Hi Laurie,
Glad to hear you had such a thorough visit with the professionals. I know I made the suggestions before, but if you feel like you need another Speech-Language Pathologist's opinion, I highly recommend Janet Equi at Saints Medical Center in Lowell. I trained under her and truly feel she is fabulous at working with infants and Mommies. It sounds like you're doing exactly what Dylan needs!
Katie :)
Wow, that's a lot of doctors and information and all that stuff. I hope the Prevacid starts working better for Dylan, that has to be miserable for all involved! And about the whole mommy instinct thing, I don't think it is always way clear, really. I mean, you don't want your baby to have to go through it all, but you want him to get over the issues. So you have desires for both directions. That would be very tough to make the decision. I'm sorry! I hope it becomes a little clearer for you.
Hi
I have or rather my son, Wysdom has reflux and throws up quit often.So I feel ya on the reflux. We are on Domperidone to speed up motility and on Zantac. What can I say...it's manageable but I would rather it be totally gone.
Maybe after two weeks of trying with the sippy cup you will get a better idea of what to do. You could always book the appointments and if need be change your mind. Depending on the wait time it gives you some extra thinking time. Just a thought.
best of luck
sasha
Ugh, I too hate to think of D getting more procedures. I do know the endoscopy and bronchoscopy is a very common procedure. When they do them on adults they do not put them under, but ofcourse since D is so young they would have to. I guess I would try the Precacid again and since it is medically necessary your insurance should cover it. I would also try the swallow studies and if those are unsuccessful than go for the oscopies. Hang in there, I know you are in the best hands. One of these will give you an answer.
Love you lots.
Being a mommy and making these decisions is so much harder than anyone ever tells you.
Poor D, and poor you!
Wow, that was a busy appointment. Even if they find out nothing is wrong doing the scopes you can have some relief knowing everything is in "working order". Glad to hear he is back with the Prevacid and you may get some help from the insurance company. Dylan has a great advocate and mommy on his side!
My son had "Lots-o-oscopies"! Yes it is all new & scary, but you are stronger than you think. If you must do the "oscopies" don't be afraid,they will help. Go with your gut and I have faith in you.
Mother's instinct manifests the force that anticipates the unknown event that maybe harmful or useful to her children and family. Sometimes it is misunderstood as paranoia but it's unavoidable especially if a woman becomes a mother.
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