September 20, 2017 10:00 pm
Josh started the day with PT. He walked around a lot, showed that he knows his way around this floor of the hospital (which is perquisite to being set free from the wheelchair), and then did stretching exercises.
We were supposed to have a family conference at 11:00, but it was canceled so his other two therapists doubled up for the session. He was asked to put together a map (OT), and with each state say where it is located (ST). So, for example, "Oregon is in the Northwest."
After lunch Josh rode the stationary bike for half hour then went down for a nap. Neuro adjusted Josh's shunt. We included a 14-second video for anyone who might be interested in how the shunt is adjusted. Claire is changing it from 7 to 6.
When Josh awoke from his nap, his whole body was shaking and he said his head felt "weird." He answered questions with nonsequitors. Mary got concerned and called the nurse, but by the time the nurse arrived, Josh was doing better. Mary told her what happened and she performed a neurological exam. But he didn't do well. He made up words to the questions he was asked. "What year is it?" "Septwonieth." "What month is it?" "Juliethsep." Josh was able to squeeze hands with equal pressure, and his left eye dilated correctly. She asked, "What year is it?" "2017." "What month is it?" "September." "What day is it?" "Wednesday the 20th." Mary asked, "What's your birthday?" "July 22nd." (It's actually July 19.) Since Josh didn't perform well at first, the nurse got the doctor. Mary explained what happened again and Makley started his neurological exam. "Josh, what year is it?" "July." "What day is it?" "Twenthienthienta." He had Josh hold his arms straight out and straight up. He checked eye dilation. He told us, "We could do another CT scan, but we are trying to prevent irradiating him." The prediction was seizures. Makley prescribed Josh an increased dose of Kepra (anti-seizure medication) and he ordered an ambulatory EEG exam - which won't happen until next week because they have only two ambulatory EEG caps. If we see any further neurological degradation, Makley will order an immediate CT scan.
Josh stayed the same throughout the evening. Mary asked if he wanted her to take his food tray back to the kitchen. His answer was to hand her his reading glasses.
Given these medical uncertainties, we are surprised that our doctor has recommended that we transfer to the East wing. The East wing is a transition zone for patients, encouraging more independent living.
Also, as we wrote previously, before Dr. Rubin did the most recent surgery, he wanted to be assured that Josh would be in his care at least four more weeks. The neurosurgeon PA told Mary as she was adjusting the shunt today that Neuro is expecting four weeks of shunt adjustments and hoping for two weeks of stability before releasing Josh. But our CCM (Clinical Care Manager) isn't sure insurance will grant our request, and she doubts that they will relent even if we appeal. She told us today that our new discharge date is October 2. We wish we knew if we were actually going to leave that day because if we are, we need to make some plans. Living in uncertainty is one of the biggest challenges of this ordeal.
Josh started the day with PT. He walked around a lot, showed that he knows his way around this floor of the hospital (which is perquisite to being set free from the wheelchair), and then did stretching exercises.
We were supposed to have a family conference at 11:00, but it was canceled so his other two therapists doubled up for the session. He was asked to put together a map (OT), and with each state say where it is located (ST). So, for example, "Oregon is in the Northwest."
After lunch Josh rode the stationary bike for half hour then went down for a nap. Neuro adjusted Josh's shunt. We included a 14-second video for anyone who might be interested in how the shunt is adjusted. Claire is changing it from 7 to 6.
When Josh awoke from his nap, his whole body was shaking and he said his head felt "weird." He answered questions with nonsequitors. Mary got concerned and called the nurse, but by the time the nurse arrived, Josh was doing better. Mary told her what happened and she performed a neurological exam. But he didn't do well. He made up words to the questions he was asked. "What year is it?" "Septwonieth." "What month is it?" "Juliethsep." Josh was able to squeeze hands with equal pressure, and his left eye dilated correctly. She asked, "What year is it?" "2017." "What month is it?" "September." "What day is it?" "Wednesday the 20th." Mary asked, "What's your birthday?" "July 22nd." (It's actually July 19.) Since Josh didn't perform well at first, the nurse got the doctor. Mary explained what happened again and Makley started his neurological exam. "Josh, what year is it?" "July." "What day is it?" "Twenthienthienta." He had Josh hold his arms straight out and straight up. He checked eye dilation. He told us, "We could do another CT scan, but we are trying to prevent irradiating him." The prediction was seizures. Makley prescribed Josh an increased dose of Kepra (anti-seizure medication) and he ordered an ambulatory EEG exam - which won't happen until next week because they have only two ambulatory EEG caps. If we see any further neurological degradation, Makley will order an immediate CT scan.
Josh stayed the same throughout the evening. Mary asked if he wanted her to take his food tray back to the kitchen. His answer was to hand her his reading glasses.
Given these medical uncertainties, we are surprised that our doctor has recommended that we transfer to the East wing. The East wing is a transition zone for patients, encouraging more independent living.
Also, as we wrote previously, before Dr. Rubin did the most recent surgery, he wanted to be assured that Josh would be in his care at least four more weeks. The neurosurgeon PA told Mary as she was adjusting the shunt today that Neuro is expecting four weeks of shunt adjustments and hoping for two weeks of stability before releasing Josh. But our CCM (Clinical Care Manager) isn't sure insurance will grant our request, and she doubts that they will relent even if we appeal. She told us today that our new discharge date is October 2. We wish we knew if we were actually going to leave that day because if we are, we need to make some plans. Living in uncertainty is one of the biggest challenges of this ordeal.
Don't be scared or nervous. There are a lot of us. We can handle this. You may want to reconsider taking him back to Beaverton right now, since there is less opportunity for security and family participation. If Joshua is going to heal, God is going to do it. Miracles can happen anywhere, so make it as easy on yourself as you can. If Joshua is going to be ok, we're all going to be ok. No need to sweat the future. Things will be fine. I promise. Let us help.
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