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Posted by Rebecca

Sylva was given the go-ahead to come home on Monday!  We were really excited and it was lots of fun to see just how excited Sylva was about the whole process.  Lots of perscriptions and a few final consults later we were finally off sometime in the evening.  Handling all the night checks and rx's during the night was a reality check for me and I am feeling like there's an infant in the house all over again.  Most of the week was spent trying to rest and now it seems like Sylva is in better health than all the rest of us ;-)

Later in the week the first followup visit was scheduled.  Her assessment was great overall however many new cautions are now a part of her life.  When life-saving measures are taken there are sometimes consequences and in Sylva's case there will be a number of changes in her healthcare.  We feel like we are very close to seeing the girl we know but that is on the outside and her organs have a lot left to deal with.  Over the next 3 months our main focus is to be strengthening her as much as possible for the coming flu season - so since Physical Therapy is still being set up at home we decided to get Sylva some of her own PT - "Park Therapy"

Back at PCMC????

Friday we were surprised to find ourselves back at PCMC, this time in the ER. One of Sylva's chest tube sites has been having some trouble healing for some time and it turns out that she needed to be checked there as a matter of hospital/physician protocol.  Sylva got a kick out of having her own room again and was busy playing jokes and trying to tickle anyone who needed to touch her. 

Even though we were in a completely different area of the hospital we still ran into 4 of our new friends in the short time we were there.  It was nice to hear good news from them in their challenges. This reminds me of some of the words shared with us shortly after Sylva was life-flighted to PCMC:  "Didn't meet any you want to trade with did you?......"

Spending time at a children's medical center will likely leave you with some thoughts that may just change your life.  No matter what weight you find on your own shoulders it won't take long before you discover others who are leading the most extraordinary lives as they carry their own incomprehensible burdens.  Perspectives can't remain static for long in a place like this.   We have been blessed to have some amazing new friends and acquaintances and I stand in awe of each of them.  One incredible woman shared with me what was said to her many years ago when she was at the beginning of her now 20+ year experience in caring for her remarkable daughter.  I don't think I have heard it said better so I can't help but pass it along: upon returning home from one of her early stays there a friend remarked to her, "So you've been to Primary Children's and met other families/patients, I don't suppose you've met any you'd rather trade with?"   Nothing feels as real as your own problems when you're face-to-face in the depth of them yet somehow the proximity of another's true drama has the ability to not only shake things down to what really matters but also put strength back into your bones and let you know you can do it -- and by the way, get going already!! I really don't know how it all works but there is so much strength and courage passed back and forth in these moments of connecting. 

The extra mile

So we decided to tally up how many people have worked directly with Sylva while admitted to the hospital.  Our best guesstimate is 80+ in each category of nurses, techs and RT's.  Then of course are the docs, residents, hospitalists, attendants, etc.  Maybe 320?  WOW!  And that's not considering the PT/OT's, musical therapy, alternative medicine, social workers and volunteers that have also been directly involved.  This is an impressive group of people and among them are those who really stand out, doing their job with such skill and care that we feel so glad we have them looking out for us!  At one point I thought about listing some of the things that have been done and the instrumental people behind them but now there is just too many and I am sure as soon as I posted this I would continue to recall more and more or inadvertently leave someone out.  Sylva really has been the recipient of great care - she has been cared for on both ends of the spectrum - from being sung to sleep to being tenderly talked and helped through painful and scary procedures to being resuscitated and nearly everything in between.  Plenty of tense moments but almost as many times of feeling that an expert has got your back.  Not being medically trained/educated I can't say I know clearly what is or isn't in someones job description but I can say that we surely know how it feels to be cared for by someone who really cares about not just the performance of the procedure but more importantly the morale and dignity of the person.  Knowing that we have been cared for by so many we are not likely to see again if all goes well makes it tempting to ask: "Can you come home with me??? PLEASE???"

Bitter-Sweet reunions

How delightful it was to run into old friends from Tahoe!!!  But then....wait - "what brings you here?"  as you hold your breath listening to hear the answer.  It is great to catch up but its not like we bumped into each other at Disneyland.  Three different families from our past crossed our path while staying in the hospital and as we have had the opportunity to reconnect a bit and heard of their experiences and cause for being there it brings so many emotions: sadness and concern for their trials, admiration for their strength and unfailing courage, delight to know a familiar and trusted friend really 'gets' what you are going through, and gratitude for one more tender mercy of a known friend in a great place to be if you're a body in trouble.

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