Saturday, March 29, 2014

Vacation Time!

It has been 4 glorious days of vacation up on the 21st floor.  The hallways are empty and quiet, darker than the PICU, and less hustle and bustle which is exactly what we all needed. Now only if Ryan and I could be laying out at a pool and sipping frosty drinks with umbrella we would ALL be happy campers, but for now that can only be a distant dream.

Cohen, aka: Mystery Man, for the most part has been smooth sailing upstairs.  His old nurses and attending doctors welcomed him back with open arms and all took turns coming to see him.  They could believe he was back, but couldn't believe the path he took.  No one had anticipated his health and needs changing so drastically.  Most everyone was impressed with how big he was, even to us he still looks so small, there have been notable changes and that was good to hear!

The goal for our vacation upstairs was to fine tune Cohen so he would be a safe and strong engine we could eventually take home for good. The doctors wanted to work on continuing to wean him from his narcotics, increase his feeds to reach his caloric intake goals, as well as try to calculate his true oxygen needs.  Weaning off the narcotics has been a slow and steady process for Cohen.  He has really shown to be very sensitive in general and even this has shown to be true throughout this process.  Next Friday it has been three weeks since he has been off the ventilator and he is still feeling the effects of the medicines. As for now Cohen still has pretty significant symptoms of withdrawal so we are trying to space out when he receives his medication, day by day.

Last night he had his fourth sleep study.  This is right after he was finished with it and still has the icky hair to prove it!


Once again his body was covered from head to toe in wires and probes to monitor every movement, breathing, co2 levels, rapid eye movement, etc.  Cohen held his own for about 15 minutes with no oxygen requirements, but then dipped his oxygen sats to the 80's so they slowly increased his oxygen and was very content on 1.5 liters.  This seemed to be his "sweet spot" and he was able to maintain 100% oxygen saturation, while breathing comfortably and having lowered co2 levels.  Even though this is a slight increase to his oxygen needs from our 2nd discharge from the hospital (only needing 1/8 of a liter while sleeping), it was a HUGE improvement from the previous discharge (needing 4 liters of high flow 24/7).  They are still planning to work out whether or not he truly needs to be on oxygen during the day as well, but we are happy with not needing to travel home with HIGH FLOW.  No more humidified water rushing through his nasal cannula for him to choke on.  He will now only be hooked up to a pulsometer, feeding pump, and oxygen concentrator.  I'm also working with the doctors and our insurance company to hopefully get approval for another oxygen concentrator for downstairs, so he can venture down to his room for the first time one day.

Besides from all of that, even in the confines of his small hospital room on his vacation Cohen is developing remarkably for everything he has already endured.  He now has a state-of-the-art toy string that hangs across his hospital crib where he can work on batting, swatting, grabbing, and everything else a 4 month old should be doing.


He is now sticking out his tongue and smiling on a regular basis (even while dreaming)

video



 and has recently found his mouth with his hands.  These are such huge accomplishments for him!




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