Friday, November 7, 2014

Nights are long.

When we got home from traveling, I immediately touched base with our doctors here to begin making changes with Annabelle's diet and care. The top priority is her night coughing and choking. I truly didn't recognize the severity until sharing a room with her. I didn't notice how persistent the cough was, which has to be affecting her rest - which is so vital for kiddos. 

The GI would like for us to wean down her night feeds so that her stomach isn't as full while she sleeps, hopefully to reduce the amount of reflux.
Personally, I'm terrified and disagree with this theory for multiple reasons. For one, Annabelle cannot more than a handful of hours without Elecare without losing consciousness and lethargic. Two, I don't believe she has much on her stomach. Her feed rare is set to 40ml/hr .. Which is barely over 1oz of formula dripping over the course of an hour. The goal was to feed her at the rate of which her stomach empties and I think we're there.. She doesn't have excess fluid on her tummy to make her choke the way she is... But u could be completely wrong! 

Before we make this transition though, I've requested to meet with both the GI and nutritionist to decide a better diet and scope plan before we start weaning off night feeds. 


The second concern I addressed was in regards to Annabelle's BMs. The poor girl is barely able to poop every 5-7days. We try not to go more than 5 days without the need of an enema to make things move. It's traumatizing to watch a baby go thru these things. I wish a doctor would help her beside ordering more meds - hopefully we can add fiber to her diet in a few weeks and that will help. 

In the meantime, we've had quite the crappy enema experiences. And I mean every word of that sentence. Including the parts where I am showering Annabelle while she cries in pain and ak is scrubbing you-know-what out of our bedroom carpet. Oh so gross :/

Once everything was finally "cleaned out" and Belle felt better, we began our new delicious med. Mineral Oil. We were told to start with 1 tablespoon x day. That resulted in another night that resembled our enema festivities. Our amazing nurse has deligently worked this week to find just the right balance for Annabelles poor tummy. 

1/2 tablespoon mineral oil + 1 drop food coloring of Belles choice + 1 packet of Splenda. Voila = medication a toddler will take. 
Gross. 

Upcoming appointments:

Optometrist 
We have an appointment for next Tuesday. I have a feeling a doctor messing with her eyes isn't going to go over very well, but we'll see.

Pediatric Surgeon
Wednesday we have an appointment to see the surgeon that placed her Gtube and nissen. I want to talk with him re: the integrity of her Nissen and if he feels as though that could be the root of this nighttime coughing. The main reason for this appointment is to have the nurse at the surgeons office change Annabelle's button. Of the last two times I have changed her button, both have been traumatic and entirely too difficult. I may be doing something wrong, or something may not be quite right with Annabelle's stoma. Therefore I'll have the nurse and Annabelle's full time nurse do the button change this time and we'll see what they say :)

The following week is when we will see our GI and begin to make plans with her diet. Let the co-pays begin!




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