We drove down to Phoenix Children's today for an appointment with Dr. Silber, Owen's GI doc. Before the appointment we dropped in on Daddy at work and took him to lunch. Then we were 45 minutes early for our appointment so we dropped in to meet our heart friend Grace and her mom Anneke. Gracie is such a little beauty and her mom was so sweet. It was great to meet you!!
Dr Silber checked Owen's weight and surprise... Owen is losing weight. I don't believe it. Since Owen is losing weight, we had to reevaluate his calorie intake as well as the amount of fluid ounces he receives.
A nutritionist came in to talk to me about Owen's diet. I told her the formula recipe we currently use.. yes, I did say recipe. It turns out that I have only been mixing Owen's formula at 22 calories per ounce and they want him to be at 26 calories per ounce.
The nutritionist created a new recipe for the Good Start and Dr Silber gave me a bunch of Pediasure to try. I suppose if he tolerates it, we'll switch over to Pediasure so that I can stop blending up Owen's formula using a recipe. It gets old. Owen will then be at 30 calories per ounce and I can give him less volume. But then I'd have to find a way to supplement the volume with more fluids (ie: water, milk, juice) so that he meets his 1000ml of fluids a day.
It's all a perfect science.
I often wonder what they would have said when Kamryn was that age. She lived on Peanut Butter on white bread, chicken nuggets with french fries, or grilled cheese sandwiches. Yikes. But hey... she turned out alright and now eats every vege, fruit and meat you put in front of her.
Dr Silber and I discussed the Gtube surgery and he would like to have it done the second week of September while he's working inpatient at the hospital. He asked me if I wanted Owen admitted to ICU or the Floor for recovery... HA... as if that is even a decision.
The PICU at PCH has private room, with a large couch to sleep on and one nurse per 2 patients. The rooms on the floor are shared with a little reclining chair to sleep in and a roommate. Not a tough decision to be made. PICU please. He then said he doesn't have much say either way, but to tell Cardiology and they can make it happen. At least he's honest.
I'll get into the nitty gritty surgery details with Dr Graziano, the general peds surgeon, on Wednesday.
Until then...
Monday, August 24, 2009
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9 comments:
Pediasure is great, you can even get pediasure plus which is 355 calories per 237ml can (and it has fibre which helps keep reflux, GI stuff moving). CHris is on this, orally and via gtube. It can be heavy on the stomach so you have to balance how they tolerate/digest it. The g-tube is handy for giving fluids, we just do extra "flushes" of water after meds, feeds and before we go to bed. I imagine the ng is much the same?
Chris is also a cardiac kid, and the surgeon had him in the PICU after surgery and then in the medical monitored bed on the floor. Private room, sleeping quarters, excellent nursing care and proper cardiac monitoring.
The only troubles we ran into was they didn't control pain properly (gave tylenol and I had to push for morphine the first day) and his high pain levels caused very high HR and some desats into the 70's which is not the norm for Chris. I would ask about pain management and stay on top of it the first 24 hours. After that we did tylenol for about a week and he was good. I put Zincofax around the tube site and we clean it every day in the tub and it's been perfect.
Good luck!
Wendy
mom to Chris, multiple CHD's FTT, severe GERD.
Oh yes...PICU please :) Never thought you'd ask to be in ICU did you? :)
Hope the new "recipe" works and does what he needs it to do.
When you said what Kamryn ate when she was little it reminded me of Jacob..he's my 5 year old and he is the pickiest eater ever...it's a constant struggle to get him to eat so I know how that game goes.
I hear the pediasure is pretty good so hope he likes it!
CAn I tell you how much I (big puffy) heart a g-tube. I feel like singing that old song "Hey Mic-key you're so fine, you're so fine you blow my mind.. Hey Mic-key"... seeing as how most g-tube buttons are Mic-key buttons made by the Kimberly clark company. Are they going to let him go straight to a button or are they going to make you go through the process of the PEG?
ITA with Wendy about the pain mgmt after the surgery. Joe did Ky's surgery as a complete Lap and we anticipated very LITTLE pain.. HAH! YEAH RIGHT. She desatted and nearly ended up in PICU she was into the 60's on 2liter's of o2- this is a kid whose o2 STAYS at 98... permanently. WE had to go for a combo of Morphine, Toradol, Tylenol and Benadryl to get her under control before it was all over... so ...
Ky did have a little granulation tissue for the first three months and then I started over-filling the balloon by 1 cc and poof- no leaking around the tubie and NO more tissue! We have a BEAUTIFUL hole... and a tubie that I love. As a matter of fact the Ped asked me the other day when we were planning to start weaning Ky from the tube... I could have strangled her right then and there. I told her "when Ky decided she no longer wants it in!!! or it become socially unacceptable for it to be there." Seriously woman... it took us three years to get the kid to homeostasis and now you want to throw that into orbit again... are you NUTS? geesh.
You will LOVE LOVE love... LOOOOVE the tube. Promise.
Glad things went well. I would choose the PICU also! I hope you get things worked out with the feeding thing the "recepie" is just funny. People really don't come to think about stuff like this. HUH? Hopefully little Owen will get used to the new diet. I know Ky bug had a hard time with the 30cal formula, but she also had a milk allergy so who knows. Gosh these little ones like to keep us busy. You are such a GREAT Mommy and doing such an AWESOME job at this heart baby\normal life thing. Really you are so sweet and positive. Kamryn and Owen have such a GREAT Mommy!
Thank you for the update! Praying for you all as ever!
Cxx
PS First time I've seen the new look - it's lovely!
See if you can get your Insurance to pay for the pediasure. My Daughter's on the RX form of pediasure (nutren) for her FTT, and i pay $14 a month!
If he has Long Term Care, they should pay for everything!
Glad to get updated on Owen as I've been offline for a week. It goes without saying that we wish our kids could just eat like normal kids, but given reality I think you'll find the button to be very convenient. First I've heard of the Mickey button though. I feel we got ripped off.
I have been given to wonder about the accuracy of scales. All Drs. maintain that they have them checked regularly, but Rudy almost always weighs less at the Cardiologist than at the Pediatrician. Go figure.
Go, Owen, Go!
Definitly PICU. When my daughter had her brain surgergy when she was 3 it was a blessing. Because as soon as they moved her to a regular room I wanted kick the other kid out of the room. Sorry I know they are all suffering but he was screaming all of the time and making my daughter's head hurt more and he was only in for a broken leg. At least when he left we had the room to ourselves for the rest of her stay. Sorry, I sound mean. I'm just saying you made the right choice with the PICU.
I still remember Braden's recipe for 24 cal formula. Too funny. And yes, it does get WAY old.
When we were admitted for Braden's NG tube, we started out on 4 and in the middle of the night his Sat's dropped and they moved us to the PICU, and wholy cow, you are right. SO much better down there. Especially when we ended up staying there for weeks. And we were in a corner so it was super quiet.
Good luck with the G tube.
And Hug Heidi for me on Thursday, I can't make it to the service...
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