Last Wednesday we had a meeting at the hospital with much of the team involved in Jacob's care. It is so important to have everyone present and discuss things collectively. I figured the team would expect me to go over the new developments, so Paul and I made a list before hand. It's hard to believe how many changes we've seen in a month. Personally, it's kinda scary!! I feel so insignificant in meetings like that. Here I am sitting with nurses/doctors/nurse practitioners/social workers/managers who all have many years of schooling and training, and here I sit, with...maybe not quite so much schooling!
Some things discussed were:
-Jacob's irregular temperature - he spikes fevers, but they disappear without Tylenol
-increased irritability - it's continually getting harder to sooth him
-oxygen level - his lungs are clear, yet he requires oxygen 24/7
-'cycling' of legs - wow, can he cycle!! He kicks his legs in a circular motion for extended periods of time. It usually goes hand and hand with irritability.
-having periods of non-responsiveness
-irregular breathing - sometimes he stops breathing for lengthy periods of time, other times he breathes really short breaths, then takes a large one, plus other breathing abnormalities
-sleepiness - at times during the day he actually falls asleep without the sleep med. He's also sleeping much longer stretches with the sleep med at night.
These concerns were all summed up with the brain sending wrong signals. That's what we were afraid of, but indeed it was confirmed. We've pretty much exhausted medications, and there are no other treatments which would benefit Jacob. How I wish I could control the brain. Even a little bit. Even a tiny bit. But, it's so out of our control. We just sit and watch, feeling so hopeless.
The palliative care nurse stated that she is unsure how long Jacob can continue this way.
How long can his body continue to fight for breaths? How long can it continue to regulate his temperature? How long will he be 'somewhat' responsive? How long can he continue to be so irritable?
Yet, we are called to look beyond his trials and struggles. We are called to look to Him who promises to NEVER leave us nor forsake us. That's true for Jacob also. He cares for him also! I often think of Daniel's three friends in the fiery furnace, feeling no pain. The same could be for Jacob also. God is the same yesterday, today and forever!
We were able to go away for a few days though. We all came home more physically exhausted than when we left, but mentally, we felt refreshed. We've never felt so clearly the need for mental refreshment. It was tough leaving Jacob, knowing we were going to be a couple hours away, but we trusted God would watch over Jacob and provide him health and the nurses wisdom in dealing with him. We were not put to shame!!
I picked Jacob up today from respite. His primary nurse was working :) She's a gem. She knows Jacob really well, and is able to work with him in amazing ways.
|Nicole with Jacob, always a good day :)|
|Jacob playing with an emergency blanket. He loves it!! I really should try to find one.|