afternoon update 5/11

Journal entry by james witzman — 2 hours ago

Jo is stable and in the process of being connected to an EEG.  They want to recheck that he is not experiencing any seizures because they plan to stop administering the anti-seizure meds.  Good news, but I hate seeing anyone mess with his head, at all, ever...he is doing fine just understandably agitated by the many probes. 

Aside from that, there isn't much new to report.   His vitals remain strong and overnight he did get some rest.  1 episode of agitation but otherwise a restful evening.  

His O2 saturation remains very strong, with just a few, very short and infrequent dips when he is agitated.  His coughing has subsided and he is improving his ability to manage clearing of his airway is improving.   The tracheotomy is planned for Tuesday @1300 , prayers needed for him to continue to improve and perhaps it is not needed!  Be strong Jo!

Alex and I want to take a moment to thank the thousands (yes thousands) of people helping us through this incredibly challenging time.  The continuous offers for help, the meals that nourish us, the prayers and positive messages we receive every day, the visitors, and the texts of love and support are truly amazing to us.  I am certain we could not have made it this far without so many great friends and family.

A couple of questions people have had:

Do you want visitors, can we visit, when is a good time, what room?

The simple answer is yes, we like to see all of you and Jo enjoys hearing from the people he loves.  The challenging part is timing and ensuring a family member is here to be with you.  We would recommend checking with us about an hour before you head to the hospital just to ensure timing is good.  It can be tough for kids to see Jo like this, but most have handled it well.  They suggest no more than 2 visitors at once, and there is a nice waiting that can support plenty of visitors while we go 2 by 2.  Jo is in room 702 in the Marybridge PICU.

Is there anything else we can do to help?

Honestly, we are so overwhelmed by how much support we've already received!  The meals have worked out perfectly and right now we feel blessed by having everything we need to support Jo and our family.  If you want to do a meal, it is extremely helpful and the link (http://www.takethemameal.com/meals.php?t=VCEM9113 )on this site under ways to help.  Thank you all!  

Do you need any financial support?

We have received so many generous donations along this journey.  It is important that each of you knows we are spending every dollar on our family and for Jo's care.  We are making at least 4 trips a day to our home in Kent and trying to keep up some normalcy with our kids. Expenses have added up and we could not have made it this far without the support we have received.  We are deeply touched by everyone's generosity and personal sacrifice on our behalf.  The Gofundme donations  link (https://www.gofundme.com/josephsjourney2 )on this site under ways to help)  is just unbelievable.  To think that so many people have donated to us is truly overwhelming.  We anticipate significant costs to continue for Jo's care for an indefinite period of time.  Your generosity puts us on track to ensure that Jo receives everything he could possibly need.   

Lastly, I am working on getting Jo his own website today.  More details to follow, but we'd like a place where everyone can visit, see and post pictures, share stories, share their thoughts, make video tributes,  see these updates, and much much more.  I will update you all on the specifics ASAP.   For now, this is the place for the most current info and links for meals and donations.  Thank you all from the bottom of our hearts for joining us on Jo's journey.  

Jojobinks your friends and family are thinking of you constantly.  You have touched so many lives, and you are loved so much.  Keep fighting, one miracle at a time.  God is with you and mommy and daddy are here.  Rest and heal baby boy, we love you to the moon and back our sweet angel.