Long Day!

Dr. Bello came to see us this morning after the 24 hour mark. He said that all the events I pressed the button for were all seizures. To my surprise he said that overall the EEG was improved. HUH??? I'm still somewhat surprised by this because the number of clinical seizures she's having now is higher than ever. He said though that she no longer has the continuous slow spike and wave pattern. Having said that he said her EEG is still very abnormal, is still reflective of Lennox-Gastaut syndrome, but overall it is improved. So, we'll definitely take the good news! He's not going to add any other new meds, stay on the diet, stay on the l-dopa, stay on the phenobarbitol and introduce the IVIG. We should know within a few months if it is effective in reducing the seizures. Keeping our fingers crossed.

The techs came next do disconnect the EEG and take all the probes off. That was another unpleasant part for Taylor. When they finished with her she looked like she had been in a fight. Poor sweetheart. Her head is a mess, I think the probes were digging into her head. The marks they left are like bad burn marks all over her head. They cleaned up all the glue and with that they were gone. Leaving a frightening looking Taylor behind.

Not to worry, I fixed her hair up and she looks as delicious as ever. This is my new FAVOURITE picture...

Then came the waiting game and after a while I was wondering if we'd get home today. Finally at 4pm the nurse came and hooked up Taylor's first IVIG treatment, to run over 4 hours.

Heart skip a beat...after pleading urgency yesterday over our desperate need to see GI and fast track the g-tube surgery, Dr. Bello made it happen!!!! They came tonight while the IVIG was running! What happened next was a LOT of questions on Taylor's feeds, how often she refluxes, how much there is, when it happens, how it smells, if it upsets her, how her bowel movements are. Lots of questions. Dr. Wrobel came back after reviewing everything. They do not think she needs a fundoplication, but they suggest we do a pH probe which is a 24-hour procedure for measuring the reflux of acid from the stomach into the esophagus. If the probe results in low acidity, then we can take fundoplication OFF the table and move on to meeting with the surgeon. They're going to call us tomorrow with a date for the pH study.

IVIG finished with no reactions, and we were discharged at 8 o'clock tonight. I don't know who was happier to go home, me or Taylor?!