Thursday, January 29, 2009

Therapy consult

Rhys was very grumpy all day today. Poor guy, he wasn't feeling so great even though he wasn't running a fever. He slept okay last night, in between him trashing about from his tummy gurgling, and then he didn't want to get up this morning and slept until we had to eat and leave for his physical therapy consult. He still isn't eating well at all, but I am giving him the benefit of the doubt today since he got his vaccines yesterday.

The doctor called this morning and said they got the results back from his swallow study/upper GI and there is no sign of reflux or aspiration, which is good news, but she thinks he still has reflux based on his behavior. She wants to repeat the swallow study in 4-6 weeks if Rhys hasn't improved with his ability to suck. Personally, I think that is the least of our worries. I can give him an extra 5-10 minutes to finish a bottle if he is an inefficient eater, but the issue is getting him to let you put he bottle in his mouth to begin with. It isn't that he CAN'T do it, it is that he doesn't want to and fights you every step of the way. Also I was thinking about the potential for the alternative methods she mentioned yesterday, specifically the feeding tube, and while this will take care of his unwillingness to eat the proper volume, it does nothing to solve the tummy issue that continues, which is a huge part of why he doesn't want to eat. Two doctors yesterday referred to the tummy problems as colic when I described them, but is colic supposed to last for hours on end? I thought that was a few hours a day and then goes away. Rhys has it pretty much 24/7. He sleeps fairly well and seems to have adjusted to having these sensations, but he still squirms and makes noises all night when his tummy acts up. He would get much more restful sleep if we could just figure out what the deal is!

Our physical therapy appointment today was okay I guess. I didn't really have expectations of the facility since I'd never been to one before, but the whole time I was there I was looking at every thing as though it were infested with germs. The equipment/toys they use for the kids obviously gets handled by all the patients so I asked to make sure everything was disinfected. While I am sure they almost have to do this, do they do it to the degree I would do it? I am fairly certain the answer is no. The whole while Rhys was lying on the play mat I kept thinking to myself I hope THAT part he is sucking on was cleaned thoroughly. I think the therapist was good, but I don't know that any of them get the preemie thing to the degree I would like them to. No doubt she gets what he should be doing and what he needs work on, but do they appreciate that germs are a huge deal and I need you to wash and Purell your hands many times before you touch him?? After she grabbed her pen to scribble notes and then touched Rhys I must have had a crazy look on my face. I think I am psycho. She also mentioned mom groups in my neighborhood I should look in to. Where you can just "let all the kids play together and the moms get a break". In what preemie world does that happen? Rhys hasn't even met his cousins yet and I KNOW where they've been. So anyway, I am wondering if I need to find a different place that really specializes in preemies. For my own sanity I don't think I can bring Rhys for weekly visits the whole while I am scanning the room wondering if the cloth items have been washed between kids and all the play mats and plastic toys have been swabbed down with Clorox.

She said Rhys was doing well, though he does have a few things he needs to work on. We need to get the head to lift higher when he's on his tummy, which is working on the muscles below his chin (I think) and also work on him "slumping" over while sitting so he sort of stretches the back muscles since he always wants to arch backwards. At this point he isn't behind on anything, but then again we're only taking about being adjusted age of about 2 months 3 weeks. This is primarily to get some instruction on how to interact with him at home and also be able to identify anything in the future he isn't doing at the appropriate time so we don't fall severely behind.


Audre said...

I have read your blog for a couple of months and i don't think that i have ever commented. If you are uncomfortable with the therapist find one that specializes in preemies. My son is special needs and I have seen it both ways, where I really liked the therapist and where I didn't really like the therapist. Call around and see what you can find out there. Hope all goes well for you.

amyoutlaw said...

I thought the therapists made house calls? Or is that just ECI?

Parker's mom said...

I agree with around and ask if they specialize in preemie. Parker's therapist comes to our house. He is only being monitored at this point, but if he were to need more intense therapy, they would come to us. And as for the germs...well we don't go anywhere but if someone comes here..I purell the crap outta them first!

Jodi said...

As much as I'd like to say that people (even in the medical field) get the whole germs thing, I don't think they do. I've gone into rooms and disinfected things before they came in and the wipes turn black. So, I don't believe they wipe stuff down. Ryan's much better at telling people than I am. We are both probably a bit overly obsessive about disinfecting everything, but Olivia has only had 1 small cold in her life. Don't let people tell you that you're crazy. I wish I could get Olivia involved in some play groups, but I'm hoping by summer she (and Ryan and I) will be ready to allow more "germy" environments. It's actually gotten less stressful now that she's crawling. It seems silly to Purell your hands to pick her up after she's been crawling on the floor. Anyway, I'll quit rambling on. I hope you find some place that you are comfortable with. It's tough to see the world through "micro-preemie mom" eyes. We notice everything that other people overlook. I don't know when that ends.

Justine said...

I came across your blog a few weeks ago, and I have to say that this post made me laugh, I remember when we brought our preemie home we were absolutely psychotic about everything being sterile too. I went to the grocery store to pick up some more hand sanitizer and just about had a melt down when I saw they were completely out of the stuff. My kid is 1 now, and I've eased up a little, but the crazy hand sanitizer lady in me flares up when flu/rsv season comes around.

P.S- you have a beautiful child!

Mary Anne Whiteley said...

My niece Ruthie gets therapy at home until she is 3 years old. Maybe they just prefer to do the evals on site?

It can be so frustrating when you know there is something wrong and the doctors downplay it, but remember, the doctors get a lot of "pyschotic" first time parents (and I'm not saying you are psychotic!!!) who are sure their child has something wrong with them and it's not a big deal. Yep, I took my first kid to the doctor for her first cold. I think my biggest issue was that I KNEW my first had reflux and the doctor was saying it was just colic. Colic, in my mind, translates to "there's something wrong with the baby but the doctor is just too darn lazy to take the time to really figure out exactly what it is." I hate the term colic. If it's happening all day every day, it's NOT colic! It may not even be just reflux. Maybe it's an allergy. You should ask about allergy testing. They can do this with a blood draw-- it's called RAST testing. Good luck!

Teresa said...

Has Rhys had an ECI visit. They do therapy at your house.

Joe said...

I would trust my gut and find another group -- maybe one that does house visits. I'm in NY and my daughter (born 24 weeks - 1- pd 12 ounces this past February) automatically qualified for its early intervention program. We've been having someone come to the house twice a week for about 30 minutes. Not that it's enough but they teach us what to work on etc.

I agree -- having your child in a group social setting at this stage, so the parents get a break -- would never be a recommendation for someone that even kinda gets it. Go with your gut.

I'm the "dad" by the way and we've have been following / puling for you guys during the NICU ride.