Simply Frustrating

This whole Simply Thick ordeal has been a real pain - literally for Cayden, as his reflux has been terrible since we took him off of it altogether.  We were encouraged at the beginning because he tolerated the half-strength well for three days and did just as well with the quarter-strength for the next three days.  But once we dropped the Simply Thick completely as of this past Sunday, he's been suffering and struggling.  He coughs constantly and spits up half of what he eats.  We have to change his (and often our) outfits several times a day because they're covered in spit up!  The coughing wakes him up all throughout the night, so he's not sleeping well.  He just can't seem to get comfortable.  So it was a long three-day weekend waiting to check in with the doctor's office this morning.

When I reported to the nurse how Cayden didn't seem to be tolerating his feeds since eliminating the Simply Thick, she asked if I thought we needed to be seen by the doctor.  I said, "What I think we need is an alternative to the Simply Thick."  Late last week, I had asked about using another product recommended by our Occupational Therapist and Services Coordinator called Thick-It, or perhaps rice to thicken his milk.  At that time, the nurse said that the doctor wanted Cayden off of the Simply Thick right away and that she thought he was big enough now not to need a thickener.  Funny, because the last time we saw her just a few weeks earlier, she had said, and I quote, "he will need to be on the thickener and Prevacid for a long time".  Now all of a sudden he doesn't need anything?

The nurse said she'd talk to the doctor and when she called back a few minutes later, she said the doctor wants to put him on Thick-It and ordered a swallow study.  We've been bugging her about doing a swallow study for MONTHS, and I specifically asked about doing one before we just pretty much cold-turkey quit the Simply Thick.  But once again, I was greeted with irritation and annoyance by the nurse at my harping about doing a swallow study and was told it wasn't needed because he was on the thickener for his reflux, not for aspiration problems.  Um, hello??  If his reflux is severe enough to bring it up and out of his mouth, he runs the risk of aspirating!!  The thickener is weighing the milk down so that it doesn't come up as easily - I knew without it he'd become a geyser and sure enough, that's what's happened.  Now he's congested and rattly and his nose is constantly full of snoogies. 

When I asked how to prepare the Thick-It, the nurse responded, "As per the package instructions."  I asked if that would be comparable to the full-strength Simply Thick or half-strength or what.  She again said, "whatever the package says."  At that point, I just hung up the phone.

Unfortunately, we're at the end of our rope with our current pediatrician and these recent "orders" are too little, too late.  I don't know if it's because they don't have experience with preemies and their issues or if the nurses are just sick of relaying my messages and questions back and forth to the doctor (99 times out of 100, I have to talk to the nurses because the doctor is busy), but we just don't feel good about the advice we're getting.  At least twice, when I asked specific questions, the nurse's response was "do what you think is best."  If I knew what was best, I wouldn't be seeking your professional opinion!

On Friday, I started researching other recommendations and options.  My first choice is the Special Care Clinic at Children's Hospital - I spoke with a nurse there and she said it sounded like their practice was where we needed to be, but there is a specific person I need to speak with who screens potential patients and makes the final determination of whether or not they will be accepted.  I left voice messages Friday and again today and still haven't heard back - more frustration!

When Jason went to pick up the Thick-It prescription the doctor had supposedly called in to our pharmacy, he was told they didn't have it in stock and that they'd have to get it from another location.  So Jason and I made the decision on our own (and maybe AMA - against medical advice) to go back to half-strength Simply Thick until we can get the new stuff tomorrow.  At this point, I feel like we know what's best for Cayden and have his best interests in mind.  Sadly, I'm not sure I can say the same about the staff at our current pediatrician's office.

So as of 4 p.m. today, we've been giving Cayden half-strength Simply Thick and he hasn't spit up since.  The damage has already been done with the likely aspiration, so he continues to cough, but hopefully we'll get him back on track and feeling better soon.