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Great day overall...out of critical condition!!

5/17/2017

6 Comments

 
Jo is officially out of PICU (pediatric intensive care unit) do to his stability and overall progress and healing.  For the first time in almost a month, he has no tubes on his face.  He is breathing room air with no O2 support, another miracle with more on the way.

Yesterday Jo had his feeding tube successfully entered into his stomach with no complications.  It is especially good to see how quickly he has recovered from his brief intubation during the surgery.  We hated to see him go back on the machine, but Jo showed us very quickly he doesn't need it anymore!

A few notes on what's  next:
  • He still needs an operation to put back the piece of skull removed during cranial surgery.  It is literally in a freezer down the hall.  Date TBD but he looks great, no swelling, so this procedure could happen within the next week.
  • We are not out of the woods with the tracheotomy surgery.  It will be scheduled next week but we are not sure whether he will need it.  We are hopeful that the Drs will not recommend needing it when the time comes.  The main reason we must still consider the procedure is safety at home.  With a trach in place clearing of the airway is exceptionally easy, and allows Alex and I to handle it quickly and efficiently.  If not in place a normal cold or cough could aspirate the lungs, cause pneumonia or other complications.  With the trach in place we would be able to clear the airway easily, and avoid stress on Jo's lungs and heart. Our mind is not made up,  the final decision really resides with the answer to a single question.  If we go home without a trach in place, are we putting Jo's life at risk?  When the surgery is planned, scheduled, and that day comes, the answer to that question will determine what we must do. 
  • If the tracheotomy is done Jo will be back in PICU for 5-7 days per policy.  The first week post surgery requires a high level of oversight, hence the need for critical care. Following that there will be a lot of training for Mom and Dad before discharge (scary stuff but we got this).
Jo is resting with very strong vitals, oxygenating extremely well with zero machine support. Today they will continue to slowly increase his food intake to make sure he is handling it ok.  It is clear that most of the planning for Jo is now about when we take him home.

We haven't really received a set timeline for go-home and much of that is dependent on the procedures I mentioned above.  It seems like we are looking at weeks, not months...

Thanks again to everyone for the overwhelming support.   As the adrenaline wears off Alex and I find ourselves absolutely amazed at how many people are following our story and offering help.  It is simply amazing.  We cannot thank you enough.  

I am quick to remind myself Jo is still in the hospital and he has been through so much with more still ahead.  Jo's journey is still only beginning but it feels good to report, he is doing really well!!

Jojobinks mommy and daddy are here.   We can't wait to see those eyes.  Keep fighting Jo, God is with you, he is watching over you.  Our eyes will meet again soon my son, we love you to the moon and back sweet angel.  Mommy and daddy are here and we are so proud of you, you got this!
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6 Comments
Aunt Kristy
5/17/2017 06:49:51 pm

Hey Jo,
So incredibly happy for your strength-- you must get it from your parents. When I was out to visit you last week, I held your hand and saw those tubes, but I also felt you squeeze my fingers, and flinch with each touch of the stethoscope, and I knew you were in there fighting. Today, you are tubeless. Already you have shown us your strength and resolve. Keep the miracles coming. We are all pulling for you and sending so much love from Massachusetts. Can't wait to hold that hand again, feel your hug, see those dimples, and hear your giggle . Xoxo Aunt Kristy

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Tami Kuiken
5/17/2017 07:32:11 pm

Wonderful news!! Keep it up Jo!! You have a lot of people that you don't even know pulling for you!! You got this!!

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Jodi
5/17/2017 09:01:28 pm

That's great news Jim! I know I'll be such a relief to get them home and care for him there! Still praying for you and hoping that Joseph wakes up soon! It will happen I just know it will! And God will tell him when it's time! We're just right next-door So let us know if there's anything we can do!❤️

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Andrew Lyons link
5/17/2017 10:24:46 pm

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Michelle Carioto
5/18/2017 06:00:21 am

Jim, Joseph and family, my husband and I are praying for you day and night as well as my church is also praying. You have been given incredible strength and we are amazed by it. Thank you for the daily updates, it helps us know how to pray more directly instead of just generally. Love the pictures you have been posting of Joseph! Take care, may you rest in His arms

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Finnestad Family
5/18/2017 08:09:15 am

Keep it up Jo! There are friends and family all over the world praying for you! We found out last night there are families in Iraq and India following your story and praying for continued miracles!

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