No real changes to Jo's status going into the evening.  We did visit with his Dr. again and she was encouraged by his progress overall.  While she didn't directly say the tracheotomy wasn't needed she suggested that the areas they want to see stability seem to be functioning well.  She also discussed the advantages to summer weather in preventing colds.  Ultimately a cold could mean a trip back to the hospital for a trach if we decide not to do it.  One more full day of rest and healing, Jo will show us what is needed.

We also discussed the possibility of going home without the surgery to replace Jo's missing skull piece.   The minimum time they would like to wait is a month before conducting the replacement surgery, another procedure with a timeline of TBD.  One thing we didn't realize, although seems obvious now, is that following that surgery Jo will be back in PICU for a few days to ensure everything went well.  

The G tube is working great and Alex and I have to attend a class on Tuesday to learn more details about how it works, cleaning, adjustments, and replacements.  The first swap of the device is done on an out patient basis at the original surgeon's office.  In addition Jo's feeding schedule is to be reviewed through regular appointments with a GI Dr.  Fortunately he has an office much closer to home, but we can expect this appointments for the foreseeable future to ensure everything is functioning well.  (Side note here: I have a really hard time saying Jo's feeding schedule?  Obviously he can't sit down for a meal but I can't find a suitable way to describe the details about his nutritional future.  Don't judge me, I know he's not on a feeding schedule, LOL.)

So our immediate future looks like we will continue blazing a trail to Tacoma for awhile even after Jo is discharged.  That date could be some time during the first week in June.  As you would expect  we are beyond happy to discuss Jo leaving the hospital, but imagine that feeling when they tell you to take your newborn home, times a 1000 on the panic level.

Our house is being prepped for our arrival by a group of angels sent from God,  we don't even know where to begin.  We are experiencing our own personal extreme home makeover and our genuinely overwhelmed by the time, effort, and personal expense being donated to our family.   We are keeping the kids out of the house for at least another week as the house is remodeled.  We have never felt so humbled and loved.  Thank you all so much.

Alex and I are sitting bedside as Jo rests peacefully.  Every day we see some improvement,  we've grown to look forward to what tomorrow holds rather than fear it.  Our new favorite phrases are "one day at a time" and of course "biscuits and gravy".

Jojobinks mommy and daddy are here, we will see your eyes soon.  God is with you, guiding you on this journey, follow him back to us.  We love you to the moon and back sweet angel.

Sorry about yesterday's post fail.  Didn't work from my mobile, erased everything I had written after my post to facebook.

Jo continues to improve every day.  Each day it seems every indicator shows some improvement.  He is oxygenating as good as you or I would with  no support.  His heart rate is solid.  His feedings increase every day and yesterday night we changed from continuous feeding to a more meal time type of eating via G Tube.  The sutures were removed from the G tube, and everything looks great to the surgeon.

Breathing overall has been where we are most encouraged to see the improvement each day.  The tracheotomy is tentatively scheduled for Tuesday, if needed.   3 things drive the need:

1. Trouble clearing his airway from normal secretions.  Jo is handling this on his own with zero need for assistance  (suctioning).  He has a strong normal cough to clear his airway.
2. Muscular support for his airway is normal.  Jo no longer uses a neck brace to raise his chin, he does it on his own.  He still sounds at times like someone snoring when he sleeps, it seems each day this gets a little better.
3. His oxygenation  is solid.  His labored breathing gets better everyday.  Several times a day for hours he has no labor when breathing at all.

Based on this I think we have shot of not performing the surgery.  Let's focus some prayers here,  Jo will be re-evaluated on Monday!

Jo still shows movement beneath his closed eyes.  Both eyes have been more reactive to light lately.  Jo continues to blink without opening his eyes, and he seems to respond to requests to open eyes with visible movement below the closed eyelid.  Jo is fighting so hard to see us again!

Today's med plan is pretty basic, work on Jo's feeding schedule, mom and dad learn about home care, and continue orthopedic and physical therapy.  It is conceivable that Jo could be home before June 1!!!

Jojobinks mommy and daddy are here and we see you fighting to get back to us and we are so proud!  Every day your journey with the lord is healing you.  He is with you lifting you fro the fog day by day.  We know we will see those beautiful eyes soon!  We love you to the moon and back sweet angel, we miss you so much!!

Jo had another productive day of healing and continues to need less support overall.  He is only taking over the counter tylenol or ibuprofen for pain.  He is breathing without a neck splint, supporting his own head muscularly.  He is off of any seizure medication and tomorrow they will remove the sutures from the G tube surgery.

I had a nice discussion with a few Drs today about the need for the tracheotomy.  It is scheduled for Tuesday following a thorough review of it's need by the surgeon.  If Jo continues to show improvement each day until Tuesday there is a chance we would cancel the procedure.  Lets's all focus our prayers on Jo's continued breathing improvements between now and Tuesday.  For the first time I felt like the Drs were leaning towards either decision being acceptable if Jo continues to improve.

Jo's eyes continue to move rapidly beneath his eyelids when we talk to him and during exams. It really feels like he is trying to open them and today his right eye peeked through the narrowest of a slit in his eyelids.  It was very exciting, and we all looked around to make sure we were seeing the same thing.  The prayers are working!!!  Let's keep it up!!

I look forward to reading more stories of paying it forward.  Everyone needs prayer and a little help here and there!

Jojobinks mommy and daddy are here and we see you trying to open up those beautiful eyes. Keep fighting Jo, you are so close.  God is healing you and people around the world are praying for you.  You have let the Lord's power shine in your healing,  you've got this Jo!!   We love you to the moon and back sweet angel, we miss you so much!

Jo has had another great day.  No complications, handling pain from the surgery with ibuprofen and tylenol and tomorrow he will be officially of off any seizure medication.  He remains breathing on his own, and supporting his own breathing without any neck support about 8 hours a day.  He is managing his secretions well, coughing appropriately, and has long periods of peaceful sleep with no labored breathing.

Jo's eyes have been moving beneath his eyelids frequently.  It's like he is blinking without opening his eyes (if that makes sense).  It feels like he responds when we encourage him to open his eyes, like he is trying but just can't...yet.

Overall we have been blessed with a peaceful day in the exceptional care of Mary Bridge/ Mom.  Jo is sleeping beside us right now, vitals solid, listening to John Bellion, and we've allowed the explicit versions he didn't tell us about.

Ok, so what's up with biscuits and gravy?  Today took the kids to the original pancake house together with their friend Melissa.  As we walked in we passed a homeless man just outside the door, mumbling to himself our eyes met.  He warmly greeted me  and said "god bless you sir, if you think about I'd love some biscuits and gravy".  He was picking through a trashcan, smoking a burnt out cigar, and drinking an old cup of coffee.   

It made me think about how the lord works.  So many people talking to their God asking for peace and healing for Jo, across the country, and today we heard across the world!  This struck me as God's call to action for everyone following Jo's story and blessing us with their love and support.  

Tomorrow I'd ask each of you to help someone in need.  So many of my friends already do this on a regular basis, but this time do it for Jo.  He is a kind spirit, he cares so much for people, and when he finds out how his story helped so many he would be overwhelmed with joy.  After you help that person, say a prayer for Jo to open his eyes to see this post.  Post comments on this blog and share what you did.  We have had over 2000 visitors to this site, think of the impact we could have in just 24 hours!!!!  We love you all so much, I can't wait to see what we accomplish in Jo's honor...

The guy outside got his biscuits and gravy and a warm cup of coffee.  He blessed us and asked us to pray for him.  I said I would and asked him to pray for Jo.  He asked his name, and said "I know Jo, he's a good lookin kid, he's gonna be alright."  Then just continued mumbling as we walked away.  God bless this man whom God spoke through and God bless each of you for the strength you give to our family.  Go forth and do great things tomorrow, share your stories, light up this post with hope and faith.  Jo is coming back to us day by day.

Jojobinks mommy and daddy are here.  We love you to the moon and back sweet angel.  Open your eyes to see what your family of angels have accomplished.  The lord is guiding you through the fog, he finds ways to ease our fears and send us messages in the most unlikely of ways.  Rest and heal with him, we know we will see those eyes soon.  We miss you baby boy!

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!

Quick update Jo had the feeding tube inserted quickly with no surprises. Thank you all for the prayers and positive thoughts.

Jo was intubated for the procedure, totally normal, but it will take a day or so to recover. He was extubated immediatley after, good news, now he is on some pain meds and shaking of the effects of the sedation.

​He slept extremely peacefully last night. His plan for care now is more rest and healing.

Jojobinks mommy and daddy are here. Thank you for being so strong . It's time to open your eyes! Let God lift you from the fog! Love you to the moon and back sweet angel.

We have decided to delay the trach procedure until next week.  The exact date TBD but we just want to give Jo a chance to keep showing us what he can do.  We had a long discussion with his Dr.  She felt based on how he is doing right now it would still be her recommendation to proceed, however she understands our reasons for holding out a little longer.  God and Jo need time to do their work!  We did confirm there is no immediate risk to Jo's stability by not performing the procedure, if anything was to become a concern, we are in the best place to solve the problem.  The insertion of the G tube (feeding tube) will occur tomorrow as scheduled.

"It's not fun without Jo" that's what Mady keeps saying.  It is so difficult to hear, it is also profoundly true.  I always knew Jo was like me in some ways, but I never realized how true it was until I met his friends.  It is so easy to see now that Jo loves life.  He loves laughing, smiling, and making other people laugh.  I can't think of a better way to describe how I like to live my life.  My family has been handed some difficult things to deal with.  Jimmy's autism, Bella's illness after birth, and now this.   I've always felt that when people get to know me they'd find there is little I value more than a good laugh, a warm embrace, and, especially lately, a great big hug.  In that way I'd hope on some level they think, if Jim can be happy, why can't I?  The out-pouring of love and support since this tragedy has kept me afloat.  

Every one of Jo's friends seems so down.  It's like a great part of their day is missing.  To me, a part of my life is missing.  Even more difficult is the unknown ahead.  There isn't a single person in this building that can tell me what to expect.    I will put my hope in God and Jo.

I am getting better at looking at pictures.  I still can't watch his videos, it literally is an indescribable pain.  He is so beautiful, so full of life, so excited by the simplest things, so gifted, and just so happy.  I so badly need to see his smile and hear his laugh again, but a video just won't cut it.

I am sitting bedside while my amazing wife keeps some sense of normalcy at hour house.  The adrenaline that has fueled us to this point is now all but gone, and times alone with your thoughts are haunting.  We've brought in Jo's music, John Bellion is playing softly in the background as he rests.   His hit "All time low" just ended,  what a prefect tribute to how I'm feeling.

Jojobinks mommy and daddy are here, waiting for the fog to lift.  I miss you so much.  I miss our talks about everything.  

• I miss your walking dead predictions.
• I miss you asking for your friends to stay the night every Friday and Saturday
• I miss playing catch in our driveway
• I miss watching you wrestle with the dogs
• I miss your flips in the trampoline
• I miss your laugh, oh how I miss your laugh

Please open your eyes Jo, one miracle at a time.  We will not give up hope, you will show us what a miracle looks like.  Rest and heal, mommy and daddy are here.  We love you to the moon and back sweet angel.  

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​

Jo had a great  night with no issues.  He continues to breath effectively with minimal support and looks great.  He is on minimal medication and yesterday the idea that he may be discharged from PICU was discussed.  The idea that he is no longer in critical need is so exciting but equally scary.  There is nowhere in the hospital that could match the amazing care Jo is currently receiving.  Obviously we now know every nurse and Dr. so there is huge level of comfort with his current level of care.

Off course he would remain in PICU if we follow the plan for a tracheotomy tomorrow at 1300.  I say "if" because we are leaning towards delaying this procedure.  It is a big step and although it is reversible Jo's condition has improved so much the past 3 days we are not sure it is absolutely needed.  We spoke with the surgeon about it and he suggested we don't do anything unless we are completely sold on the idea. After reviewing Jo, he was clear that delaying the process a week is no risk to Jo's current condition.  In fact if we were to wait and something occurred that indicated he needed the trach obviously we are in the right place to change plans.

The risks associated by not doing the procedure are fairly clear.  There is the potential that Jo can not sufficiently secret fluids from his breathing canal and cause pneumonia.   He is young and  strong and a bout with pneumonia is not life threatening, however getting sick multiple times will eventually weaken his lungs and heart.  The trach allows us to more easily clear the airway from fluids and thereby reduces the risk for pneumonia.  The second risk is just the failure of the muscles along his airway.  The trach is below the tongue and does not require strong next support to keep the airway clear.  In effect Jo sounds like someone sleeping with sleep apnea at times.  His cough is strong, he lifts his head of the bed, and all of the muscular support seems intact currently.

All of Friday and throughout the weekend Jo has had less and less trouble breathing.  He rarely labors to breath, and is on minimal oxygen.  In fact in one instance his nasal O2 tube fell out and no one noticed for about 15 minutes, he did perfectly fine!  Today will tell us the best route for Jo. 

Aside from breathing Jo has also shown some nuero function over the past few days.  He doesn't like the cold stethoscope and moves when it touches his chest.  If you moves his arms for therapy he actively resists at times.  I tickled his feet and each one moved in response.  He has progressed from producing tears, to actual weeping and crying when he is uncomfortable, Jo is trying so hard to get out of the fog.  It made us cry to see him cry, but it was also uplifting to see something so typical!  The most exciting thing is to see him squint his eyes, together.  It seems like he is trying to blink!

We need prayers and positive thoughts for Jo to open his eyes and strength for us as parents to make the right decision on the tracheotomy.  We are very close to our next miracle, Jo is fighting and God is with him, we can feel it!

Jojobinks mommy and daddy are here and your friends and family are thinking of you constantly.  We know you are battling to come back to us.  We know how strong you are, we know God will push your through the fog when the time is right.  You have an amazing group of angels praying for you everyday. The world needs your smile, your laugh, your beautiful eyes, and we need your hugs.  Keep fighting Jo, the lord is with you reaching his hand to lift you up.  You were a miracle from day one, a priceless gift to the world and us.  One miracle at a time my baby boy.  We love you to the moon and back sweet angel, mommy and daddy are here.  You got this!
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Ok, Jo is doing so great that it's time to focus all of our prayers on the next miracle!

​JO OPEN YOUR BEAUTIFUL EYES! For everyone following close your eyes and pray, "jo open your eyes". Do this often today. There will be thousands

Jojobinks mommy and daddy are here. There are so many people praying for you. Open your eyes sweet angel, that's all mommy wants for mother's day! You got this Jo!