All I Can Do...

...Is Love You To Pieces. The song keeps going through my head thinking about my sweet Taylor. Francis and I had tickets to a Calgary Philharmonic Orchestra concert tonight with Chantal Kreviazuk. It was a crap day today for bad news and I really didn't feel like going but Mom had come to the hospital and she made us go. I guess it was a good distraction. Chantal has such a beautiful voice, and that particular song tonight had me a little choked up.

So...I blogged this morning about yesterday's EEG, and the disappointing results I got this morning when I saw Dr. Bello. Unfortunately that wasn't the only bad news...

Taylor had her Video Fluoroscopy (Swallow Study) this afternoon. Initial results that we were told right away were that there was some question on how Taylor managed the bottle at the beginning and they were going to take another look at it. As for the pureed meal, she is definitely 'pooling' some of it at the back of her throat. Basically she's swallowing, and most of it goes down the right way, but some of it is lingering behind. This puts her at risk of aspiration. I was feeling pretty down about this because I so wanted the result to show that she was swallowing everything nicely and that there was no risk of aspiration happening.

Getting ready for the Video Fluoroscopy

All strapped in and ready to eat

The machine came right up beside Taylor to x-ray her throat from the side

Here's Taylor! Live on x-ray.

The gals from the test came back to see me around 5pm tonight. They had reviewed the study with the Radiologist and Taylor had in fact silently aspirated a small amount of liquid from the bottle feed. My heart just sunk. They have strongly advised that we stop giving Taylor thin liquids orally. I asked if this could improve and what they told me was that it is unlikely. That it is pretty rare for them to see improvement because the swallowing muscles are ones that you cannot strengthen. I felt like they had just sucked any hope out of me, and that Taylor will need to be tube fed liquids forever. The SLP (Speech and Language Pathologist) said that the congestion she heard build in Taylor's throat from the time the study finished to us putting her back in her wheelchair, told her that Taylor was aspirating again. How can I absorb all of this?

So they leave the room and I'm left here alone with everything running through my head. Taylor is coming home with a tube. I have to learn how to use it and put it in. She'll never drink again. Tears came, lots of them. I called Francis but he was in the car with Marissa and her friend so he said he'd call me when he got home. I went to the kitchen to melt the butter to mix into her supper...they told me I can still feed her the purees orally. As I was coming back to the room I passed the Pediatrician in the hall. She saw my red eyes and came to talk to me.

She does not want me to think this is forever. She said that it could be that with everything else happening with Taylor right now, increased seizures and all, that it's possible for her feeding to be affected by it, and maybe once she's back to her baseline, her feeding abilities may also improve. They are going to talk tomorrow with the team from the study, as well as our ketogenic dietician, and come up with an interim plan for how we are going to feed Taylor. There may be a possibility of thickening her formula so that she could take it orally. But then there's still her water requirement, and she definitely can't take that orally. So tomorrow's big priority is the new feeding plan.

What's next I really don't know, but I'm feeling pretty disheartened, discouraged, and sad tonight. I feel like it's another loss for Taylor and I just keep asking whoever out there that may be listening..."why her"? I SO hope that the pediatrician is right and that once Taylor is back to her normal self, this new challenge will resolve itself. But at the same time, the swallow study team didn't give me that kind of hope. I don't want to let them take that hope away from me, but tonight it's hard. Tomorrow is a new day, with that (and some sleep) I will try to face this next challenge with a more positive outlook.

On a happy note, before they came with the bad news, Taylor enjoyed another visit from Sarah the Music Therapist. Definitely the highlight of a difficult day. Thank you Sarah for bringing some smiles our way.

Taylor's exploring the drum

She enjoyed the chimes again

Nice touching Taylor