Tuesday, August 15, 2017

It has been a rollercoaster

The past few days have been a rollercoaster for us all.

Saturday was a rather relaxed day, with shortened therapy sessions and no plans for anything else. We took advantage of the down time and let Cydney get as much rest as possible. That evening she ended up getting sick and we had to stop her feeds for a while to give her stomach a break. It is a fine line of how much we can mess with the feeding schedule.

The nutritionist and nephrology units have an amount of fluid and calories they would like to see her get in a day, and her window of time to receive the feeds is shortened. Due to her needing to be NPO for radiation each day, she is not fed past midnight.  Only clear liquids are allowed, and those can only run until 6am when we leave for her radiation treatments. We do not get back to PCH until 1030 or 1100, and feeds can be started back again.  We don't want her fed too fast, which can lead to getting sick.

Sunday was a very low key day. No therapies at all. Cydney was able to sleep most of the day. We made a switch in the time of day her Zolpidem was given, in order to be able to observe if there were any effects on how she reacted to the medication. As it has been used in cases of Cerebellar Mutisim/Posterior Fossa Syndrome patients before who showed increased communication and movement. She had been getting the drug at night time and we would see more movements out of her an hour or so after having been given the medication. After her dose on Sunday afternoon she slept and seemed to get some quality rest.  She is beyond tired and working so hard to stay awake.

Late Sunday night early Monday morning, Cydney had another episode of getting sick, this time it happened just after stopping her feed at midnight and repositioning her in the bed. The nurses jumped into quick action and got her all cleaned up and back to sleep as fast as they could. By 230 everything had calmed back down and we were able to get a few hours of sleep before the Ambulance transport was ready at 615 am.

Monday Jared drove up to Phoenix to be here for the first day of her chemo administration. Although it did not end up happening and there has been no word from Oncology why she was not given the drug. As we got back to PCH she began her feeds and went right on into Physical Therapy. Each therapist said she was very tired this day, but was able to push herself through the sessions and do well.

Monday afternoon there was a point that she did some twitching and eye movements that appear to be seizure like. We discussed with the doctors about it and were told she would be monitored and to keep a close eye for other incidents like that one.

Monday night there were some issues keeping her calm and staying asleep. Jared was staying in the hospital room with her, up until the early morning hours watching over her.

Today, Tuesday, Cydney was very tired. You could tell she did not get a good night of sleep, she was very groggy and slow to react to our commands. We had a scare just before leaving for radiation when her HR spiked and Oxygen rate dropped really low. She took a few moments to respond to our touches and voices. We are not sure if these are seizures or what is going on. The past several days her HR has been high and she seems in discomfort. We are not able to pinpoint the source of pain, if that's what it is, due to her inability to communicate with us.

She had an EEG ran again today, to monitor for seizure activity. We will await the results and findings if anything comes from that. Doctors do not have an explanation for the elevated HR, when her BP is in a normal range.

We continue to watch her vitals and note any significant changes we see. Knowing that radiation and the eventual Chemo is only going to make the tiredness and possible sickness more pronounced we are evaluating her daily to see how much she is able to participate in the therapies. If she were to get to a point she is not able to participate or benefit at this time we will move to a different room on a different floor that can more accommodate her need for closer monitoring.  

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