Monday, October 24, 2011

I think we're getting there!

Since starting KayTar on Augmentin, she hasn't had any abdominal pain! Her current GI med/feed schedule looks like this:

5am: Nexium
6am: Augmentin + 6 ounce Pediasure (over 45 minutes)
11am: Augmentin + 8 ounce Pediasure (over 1 hour)
3:30pm: Augmentin + 8 ounce Pediasure (over 1 hour)
7pm: Nexium
8pm: Augmenin + 6 ounce Pediasure (over 45 minutes)

Actually, last night Josh forgot to adjust the dose on the pump, so she got 8 ounces at bedtime and it went well! We're keeping at the 6, 8, 8, 6 schedule for a couple more days and then we'll move up to all 8s and see how it goes. She is also eating pretty well (for KayTar), even her beloved meats are not causing pain. Thus far, I would say the Augmentin is a success and I hope that it continues to be helpful to her! 

On the respiratory front, KayTar might be having her sleep study done this week IF the pulmonologist's office can actually get the orders sent out. One of the most frustrating aspects of having a medically-complex kid (aside from the way the new Zevex bags stick to the bottom of the spout and make me spill formula once a week, at least) is all the calls to physician's offices and schedulers to make sure orders get sent, received, and to the people they are supposed to get to so tests can be scheduled (or to make sure referrals are made or that lab results are received or that the medical supply company sends/receives updates prescription forms on time and so on ad nauseum). If you don't have experience with this little game, you would be SHOCKED to know how many times the ball gets dropped during the process. It seems very straight-forward; doctor writes an order, staff member faxes an order, scheduler receives an order, calls parent/patient to schedule. But it usually goes more like this, doctor writes order, forgets to sign order, parent calls office to check on order after a week, doctor supposedly signs order, order is supposedly faxed to scheduler, parent calls scheduler (another week later) who has not received the order, parent calls clinic to check on order, staff tells parent that order was faxed already, parent asks if they would mind refaxing it, parent calls scheduler to notify her that orders are coming, asks for a call back....and waits. Repeat calls daily until orders are received by scheduler. So, that is where we are now, but the scheduler told me that they have an open slot on Wednesday, so if the office gets the orders to the scheduler soon, KayTar will likely be having her study done this week. Fingers crossed!

In other news, BubTar finally decided on his costume: Dr. Who (the 10th) Isn't he cute?!


Magpie said...

He looks great.

What's Augmentin? Glad her feeds are working better.

Anonymous said...

Glad to hear the Augmentin (antibiotic, but when used in small doses can be helpful with motility; hope that helps Magapie) is working for KayTar. Before I moved to the Gastric Stimulator (5/2006) we tried that route (we used Erythromycin) along with several other less invasive treatments. My disease is SO SEVERE that I am known among the IR Department as the MotilityLESS patient. In fact, they tend to find it astonishing (much to MY dismay) that when they have me on the table and scan with the fluoroscopy, there is NOTHING HAPPENING with the stomach. Not too mention that I have failed multiple GES, miserably. The biggest problem is that they don't have a formula for people who don't/can't eat the required amount they put in front of them. So my results are worse than they appear on paper, which aren't good to start with!

~aj~ said...

I am going to sheepishly admit that I have no clue who Dr. Who is. But I DO know that is one cute BubTar!!! :)