Feeding Problems

I received a phone call from Peyton's pediatrician a few hours after my last post earlier today. She, of course, had spoken with the speech pathologist after the swallow study had been done last Wednesday and got her impressions of how Peyton did during the study. To the doctor, it sounded more on the grim side. She did speak to the gastroenterologist Peyton saw when she had the NG tube earlier this year. They reviewed the study and have decided that it isn't absolutely urgent for us to get in to see the gastroenterologist immediately. Yes, we do need to see her. The earliest appointment I could get is not until 12/06/07, and that seemed to suit the pediatrician based on the conversation they had.

Basically, the news from the study is not good news. It showed things about Peyton that were not good signs. The pediatrician explained that statistically kids who are in Peyton's current situation with her swallow study will more than likely wind up with the permanent G tube. She told me that we ought to prepare for that reality, though it isn't necessarily something that is going to happen soon. Although, it could - we just don't know. They will be very concerned about Peyton's weight (they are always tracking it very closely anyway) and will look for any signs that she's falling off the growth curve she's currently on. Being only around the 5th percentile for weight, we don't have lots of leeway.

I asked lots of questions and in a nutshell, I think that probably with all of Peyton's issues it may be a case that Peyton's developmental and neurological deficits are playing a strong hand in what is happening to her now. There are some parts of what is going on which will not really be aided through therapy, though we are to get into some feeding therapy with her and hope for the best. It may be that she has done as remarkably well as she can in terms of her feeding and may be at a point where she's at her limit for her capabilities and needs to have assistance. The eventual placement of a tube may not necessarily mean that once it's in she will receive no food by mouth whatsoever as we'd thought last week. It may just be for supplemental nourishment.

The doctor asked me if I was up on my CPR. I took a class before Moira was born but that was a few years ago. I could use a refresher. She stressed that anyone who is to care for Peyton must be current on their CPR training. Since Peyton has issues with her swallowing, it could be more possible that she could choke on her food. I, myself, think she's not even swallowing all of her saliva, so she might even choke on that. Of course, the doctors will continue to follow her and watch her very closely for any signs of pneumonia which she is at greater risk for since she is aspirating some of her foods.

It was a lot to take in today. It was a good news/bad news sort of situation. We'll get her therapy going as soon as we can and hopefully that will help a little. We'll see the gastroenterologist next month and get a clearer picture of what we can expect. Hopefully we don't have to go the route of the G tube anytime soon, but we'll obviously do whatever is best for Peyton.

I'll keep you posted on how the dentist visit goes tomorrow! Wish me luck!!

Swallow Study

I just got back from taking Peyton for a swallow function study at Texas Children's Hospital. They wanted to be sure she's swallowing properly when eating - make sure all the right parts are working. Well, they aren't. The speech pathologist called the doctor who ordered the test but he's out of the country. Even though she is eating, feeding her is not without a great deal of difficulty if it's by spoon. She can handle her bottle herself. However, the study showed that she is aspirating a fair amount of food - liquid and the pureed baby food - when she is eating. She is also not using her tongue at all. When feeding by spoon, you basically have to scrape the food off on her upper lip to get it in her mouth and let her take over from there, but she's not using her tongue at all. That means she's just letting gravity make the food fall to the back and be pulled down her throat, increasing her likelihood of aspirating her food. Aspiration of food is probably why she always sounds congested. It is also putting her at great risk of getting pneumonia, which she has already had once back in May. With all her other issues, that is not a good risk to have. The speech pathologist needs to talk to the doctor, but very likely we'll be referred back to the gastroenterologist and will very likely have Peyton put on an NG tube (feeding tube down the nose) for a few months, all while receiving intensive speech and feeding therapy (hoping we can get her in quickly!). After a few months, they'd repeat the same study. So, while she'd be on the NG tube, there'd be no food by mouth meaning her oral-motor skills could potentially worsen since she wouldn't be eating (though therapy would help that hopefully) and she would become more orally defensive. She already is quite orally defensive, so I can hardly wait to see how "worse" would look.

Once again, she takes a few steps forward and many, many steps back. Not at all the news I was hoping for today.