Late Friday night I finished my assignment and was looking forward to hanging out with Mary and Remy during a seven-day break. Saturday morning came and we were off to our daily hospital routine. Mary had her coffee. I had my green tea we had a few bananas and some snacks packed and we were off. It was a pretty good morning. My sister Dawn came to visit a little after noon. We caught up and hung out bedside with Remy and ate lunch in the NICU. Remy was content, until about four o’clock, when Dawn headed out. Little did we know Remy was just behaving for her Aunt Dawn.
The rest of the day was not content. Remy had begun to experience more seizures. She has done this before on many occasions, but these were more like the original seizures she experienced about six or seven weeks ago. We held her hand and pleaded with her to stop seizing. A few hours later she stopped seizing and they seemed to get them under control after upping her dosages of Phenobarbitol, Ativan, Keppra and Fosphenytoin, all of which slow down the brain activity. We had seen this before, but being that she had been experiencing so many seizures this week it was tougher than usual to accept.
Easter Sunday came. We passed on dinner with our family in Long Island, and though they wanted to come and be with us we needed to be alone with our baby girl all day. This day would turn out to be an even more difficult day for Remy. Her seizures had continued on and off through the late afternoon into the early evening. The seizure activity was extremely frequent and they for lasted long periods. They continued steadily for about thirty minutes at a time with maybe five-minute breaks. They look like little electric shocks going through her body every second. Her arms, legs fingers toes all jerk simultaneously. We held her hands and feet and talked to her over and over, pleading with her to get better. I can’t describe what goes through my mind watching this happen, except that at this point I am losing my mind. This went on for half the day. Thankfully due to the high doses of medication she was given, she eventually stopped.
Still we cannot do an MRI because she is in no state to do so. An MRI would give us more accurate idea of what may or may not be going on under that little skull of hers. It’s a huge concern. Could this be damaging her brain? Could it be affecting her in the long term? Yes. On the other hand, it could be cranial reaction that has yet to do any damage. Her motor functions work well. She grabs, jerks and clenches, yawns, licks her lips and reacts dramatically at times and this is all positive. We can feel her presence. She has reactions like you and I. Though we cannot hear anything because she is intubated she cries, yawns, gets pissed off. You can tell when she is uncomfortable or hurting.
Yesterday her chest tube was removed after being clamped for 72 hours. Unlike last week the x-ray four hours later showed no air accumulation after the fact, and for now it does not need to be reinserted. This is a small victory and what we hope is a sign of more to come. She is peeing like crazy, about 140 cc’s just in just a 10 hour span yesterday. Not by measurement, but in comparison its the equivalent of what you would have to pee after during a heavy night of beer drinking. If there were an over/under on her urine output Remy covered the over by a long shot.
This morning has been great so far. Mary and I woke up to some Bob Marley’s, Three Little Birds. We called in to the NICU beforehand and Remy’s still hangin’ strong! Her levels continue to be weaned down on her oscillator and it is a strong possibility that she will come off this week and go to SIPAP. In other words; WE MAY BE ABLE TO HOLD HER THIS WEEK! It’s been about a month since we have been able to do so. We are really hoping this comes to fruition quickly. We are feeling so good today, the sun is shining and so are our faces! Mary just shed some tears of joy when we were told of the possibility of SIPAP. We have new energy today! There is a reservation under the name ‘Remy Zappulla’ for a SIPAP, which could be seen as early as tomorrow if we are lucky. We have asked our daughter to spare us of any surprises and stay the course!
We took some Easter pics this week of Remy. Aunt Brenda got her a baby duck, which we put in a plastic bag so no germs get to her, and Mom T. brought us Mary’s first Easter basket from 1980. (Mary was born the night before Easter). Hopefully this will be our last Easter indoors. Bring on the park next year!