"The Plan"

Taylor had a pretty good day. She didn't have to go through another tube change, so that definitely worked in her favour. But that meant that Francis didn't get his turn. He was here at 11am for our second teaching session, but the Home Nutritionist didn't show. That was a bit disappointing. We found out later in the day that she was sick at home.

The OT came this afternoon to discuss "The Plan". So there are three concerns from the Swallow Study report:

1. She had a micro aspiration from her liquids
2. She is pooling the solids at the back of her throat
3. There is bridging of the airway

Both 2 and 3 put her at risk of aspiration. Bridging of the airway means that the pooling food is hovering over the flap right over the airway. The recommendation of the report is just that her liquids be thickened! This is great news! On Tuesday night when they came to talk to me, the impression they gave me was awful and I had her needing a tube for liquids for the rest of her life. Not so!!! There is a carb free thickener called SimplyThick that can be used on the ketogenic diet. We are going to thicken her fluids with it to a nectar consistency. Taylor has no history of aspiration pneumonias, so we are prepared to accept the risk and take all the appropriate steps to minimize this risk:

• She will continue to be observed by the Occupational Therapist and Speech Language Pathologist here at the hospital at our regular Infant Team appointments. They can watch for any feeding concerns.
• We are going to more closely monitor her overall health, how many colds she gets, if we start to notice increased work of breathing, lots of coughing, and signs of pneumonia.
• We are going to thicken her fluids
• We are going to make sure her feeds are as safe as possible: properly positioned in appropriately supported seating, making sure that she is very alert when feeding and not having lots of seizures

If we aren't prepared to accept the risk, the alternative is to tube feed her. They usually only use an NG tube for a few months, and then surgically put in a G tube in her stomach. We're just not prepared to do that at this point, and it isn't the recommendation either.

This SimplyThick can cause a lot of gas and discomfort, so we have to start this in very small amounts. We're going to give her two ounces of thickened fluids three times of day through until Monday, with the rest of her fluid going through the tube. This will gradually increase until all her fluids are thickened. So we will be using the feeding tube short term until she is up to her full fluid intake being thickened.

I like this plan :-)

I can live with this plan :-)

I gave her the first two ounces of thickened formula at suppertime and she handled it very well, without dribbling anything down her chin. This was nice to see, because when she drinks her bottle, quite a lot spills out of her mouth, almost like it's too hard for her to manage.

That's about it for today.