Daddy's Experience

The days are starting to blur together. It's been 18 days in hospital. That's too many. It's taking its toll on us all, me especially today. Very grumpy, very frustrated, very done.

Poor Francis had a pretty traumatizing experience with the tube insertion today. I don't think he was too worried about doing this procedure...until it took him about 5 times before it was in. Having to subject your screaming daughter to that miserable experience once is awful, let alone 5 times. But he kept at it, and finally got it. Way to go honey, you did it. I think it took Francis longer to recover than it did for Taylor.

All bundled up for the tube insertion

Having to hold Taylor down is the worst part of it all

Daddy snuggled his sweetie for a long time after it was all over

It has been back and forth, back and forth, back and forth on whether or not we need a pump. Bottom line, yes we do. If I have to syringe 5 feeds a day into her tube, give her three thickened feeds a day through a bottle, and three oral meals a day, that's all I'll be doing is feeding ALL DAY. I believe that finally at the end of the day, after my conversation with a very understanding doctor, it has been approved for us to go home with a pump.

During rounds this morning I said that I was concerned with the fact that Taylor has starting drooling excessively. I'm talking serious drool. Way beyond anything that could be attributed to teething. And she has significantly changed the way she's eating her solids, the pureed meals. She takes a spoonful, swallows, then pushes a bunch of food mixed with saliva out of her mouth while she sort of suckles her tongue. Over and over and over. This is not normal, and I don't want to get home and be concerned that she's not managing her swallowing safely.

So they requested another OT consult, and she came by at lunchtime. She watched Taylor eat and agreed that there has been a definite change from last week and she thinks that we should look at having a FEES study done. This is a Fiberoptic Endoscopic Evaluation of Feeding. A flexible fiberoptic endoscope is introduced transnasally to the patient's hypopharynx where the clinician can clearly view laryngeal and pharyngeal structures.  They can evaluate the sensory and motor status of the pharyngeal and laryngeal mechanism.  Food and liquid are given to the patient so that the integrity of the pharyngeal swallow can be determined.  Information obtained from this examination includes ability to protect the airway, the ability to sustain airway protection for a period of several seconds, the ability to initiate a prompt swallow without spillage of material into the hypopharynx, timing and direction of movement of the food through the hypopharynx, ability to clear the food during the swallow, presence of pooling and residue of material in the hypopharynx, timing of food flow and airway protection, sensitivity of the pharyngeal/laryngeal structures and the effect of anatomy on the swallow.

This will be very interesting to watch. The frustration today was around when this should be done. More back and forth, back and forth. I think it should be done now, but they are questioning whether we should wait until Taylor gets back to normal. What is normal for Taylor right now, I have no idea. And we could wait forever for that. They think it's possibly related to the med adjustments, but the feeding/drooling issues started in the middle of last week, and the Sabril wasn't cut in half until Friday night. Interestingly enough she has been more her 'normal' self, behaviour wise, since the Sabril went down. And I THINK the seizures are coming down. I'm almost hesitant to say that out loud. Anyways, after much back and forth (too many players involved and they're not communicating with each other) and frustration, the FEES study will either be done tomorrow or Thursday.

Thankfully we had a few brighter parts of the day. Thanks Carol for the bag of giggles this morning, Jane for the care package this afternoon, and Mom for the suppers. Taylor napped this afternoon in the funniest position...both arms, one leg, and her other foot's toes all sticking out of the crib, so I'll end tonight's blog with a funny picture...