Wednesday, March 19, 2008

Wednesday Update :)

OT therapy from Monday morning




Todays Update
The GI surgeon came to talk to us today about placing the g-tube (button). They will add Coop to the schedule on Friday afternoon. The surgery itself only lasts about 15 minutes but as we know there is a lot of the time spent in surgery prep and recovery. This is a relatively small surgery and with low risks but we are told that any surgery will increase his agitation and possibly set us back a bit on the storms. Afterwards, he will no longer need the tube in his nose. Someone questioned why he couldn’t keep the NG tube (through his nose to his stomach) until he relearns to eat. One reason is that the NG tube may interfere with his swallowing because something is running down the back of his throat also the NG tube can be pulled out very easily and he will probably need access to his stomach for quite a while so we have opted to do something a little more convenient.

The swallow study has been postponed until further notice due to his feeding issues. The speech therapist explained that if your gut doesn’t feel good the natural response is to not allow anything in your mouth. She said it is very important to make everything that surrounds eating a very positive experience and that we should not force anything. When he is opening his mouth by himself and seems to be comfortable with having food in his belly we will try again. Note to self: No more prying his mouth open to shove a sugar covered binky in his mouth. The doctor has changed his formula to one that is partially digested so he has less gas and hopefully will feel better. I think he is a little bit happier with this new food but not completely. If this doesn’t work the next step is to add another medication to help his system empty quicker. Other possible reasons to his irritation are gastric reflux, having his arm and leg braces on, just becoming more alert and not knowing how to express himself.
The following pictures are how we spent Sunday afternoon at PCMC. We went to church here and then took Charlie on a walk in his new cruisin' machine. Charlie had been upset all day so we were trying everything to calm him down. First the stroll down the hallways then a great nurse got special permission to swing in the gym. Nothing worked to calm him down so that is what clued us in about gastric discomfort
Rocking in the chair with his two boys then Britt lost interest and the other two fell asleep.

17 comments:

whitney said...

Rob is such a sleeping beauty!!! I love all of Coop's expressions, even the "stop moving me!" ones. He is doing so well, sweet boy.

Anonymous said...

Do you know what a big number 50,000 is?? You amazing people are having such an amazing impact on such an amazing number of people! Thank you for sharing and letting us cry with you and rejoice with you. I feel fortunate to be one of over 50,000!!!

Roxey said...

Glad to know Rob's a drooler.....

Jay said...

the drooling runs in the family back off.

Meghan said...

rob that is the most lovely picture i've ever seen. you couldn't have tried any harder to look pretty.
i always love PT pics - because i like the kid to be busy. i'm glad to hear about the swallow study and gtube. rumor has it, it was a pretty good day...

Anonymous said...

I LOVE to see Charlie working out! the pictures are adorable. My favorite is Charlie in the swing. He looks so relaxed and calm. So many prayers continue with all of you.
Connie

Anonymous said...

My daughter is at Valley View. We found out about the baby. Know that are thoughts and prayers continue to be with you. My daughter just had a button put in on the 5th of February. Ahhhh you will love it. We had a NJ tube for 10 weeks and a NG for a week. It makes life so much easier. Good luck and keep up the great work all. We are pulling for you.

The Baum's said...

Charlie's face during exercise is the same as mine during exercise....I feel for you dude! Too bad I can't hire someone to rock me to sleep when the workout is over! He's tooooooo cute!

Anonymous said...

Once again... one of the most adorable babies I have ever seen. Keep in mind I hav 21 extremely cute grandkids...so that is compliment coming from the grandma of all grandmas.... I am about ready to make him my screensaver as he is on my computer more than the beautiful hilly field I have now.
Cute picture Rob.....

Love, Jill

PS...just saw Stacey and Richard's new house. I will be torching mine this weekend.

Anonymous said...

He looks so peaceful on the exercise ball. Oh, he is the cutest little boy...Know that we are praying for charlie and your family. Do not ever give up your faith in hoping for him to be made whole again.

hizznizzle said...

you guys are amazing! That little Charlie is so dang cute, wish we could squeeze him!

Groove The Dance Studio said...

well Rob, just got off the phone with Angel, and I can't wait to hear about your amazing night! I can't wait much longer, so I'm going to sleep! Glad you guys had such a great experience--you deserve it!
Sweet Dreams Charlie, and don't drool on the Naugahyde Rob!

Roxey said...

whoops! That last comment was from me by the way....

Suz said...

Ang-the next time Rob passes out in that chair, PLEASE shave those bizzare patches of facial hair.

Kelly said...

Have you considered Massage Therapy as well as the OT and PT? The power of touch is amazing! I know that your darling baby boy is getting all the touch he needs, but a little more from a different outsider could be rather therapeutic. I don't know if they offer any kind of Infant/Toddler Massage up there, but when I come to visit, I'd be happy to "work" on him. AND I believe that it's worth looking into getting for him.

Love, your therapeutic massage student sorta cousin...

Kelly said...

Oh...y'all deserve a massage! I'd be happy to work a couple of free massages in for you both! It's not as though you haven't done anything to deserve it! Plus I need (and would love) the practice. I'll try to get up to SLC to visit Peggy and Dave soon.

Meghan said...

ooh ang - you better take kelly up on that offer! i doubt rob would allow anyone to touch him - he's a lot like his crazy oldest sister...