UP TIL NOW...

​Journal entry by james witzman — 5/1/2017

Yesterday Jo had what started to be the best day here.  His vitals were solid, he looked at his best.  Much of the swelling had reduced and he was looking more and moe like our little boy.  Despite the outward appearance of improvement his Mom just had a feeling something wasn't right.  She just stayed close by Jo, even laying with him in bed.  It's all she wanted to do since the day he got here.  She slept by his side for over an hour until Jo started to experience some respiratory problems.


Medical stuff:  I am not a Dr., I am not qualified to discuss the things I'm about to discuss.   That's ok, I am a parent in the middle of a crisis.  If you know something I said isn't exactly right, that's ok just keep it to yourself; hopefully, you get the jest.  How Alex and I understand it is far more important than being clinically correct in our explanations.

Ever since Jo exited his first emergency surgery he has had on and off respiratory issues.  He sounds like he is snoring, and it is not comforting to see or hear but it lets us know he is fighting.  Yesterday the nurses were working hard to remove some congestion to help clear his airway.  Pretty mundane stuff when you just had brain surgery.  In the course of the normal neurological checks, the Dr. noted his pupils had dilated suddenly.  They check this almost hourly since Jo has not opened his eyes yet, and it is the clearest indicator that his brain is swelling.  He was immediately sent for a CT scan which revealed swelling on his brain.

Let's talk about swelling and bleeding in the skull for a minute.  It is the reason we were here in the first place.  When Jo hit his head he fractured his skull.  The body's natural response is to send blood to the area, swelling occurs.  In this case that was further complicated by an injured blood vessel was forcing more and more blood into the skull.  The brain has nowhere to go and will begin to shut down if something isn't done to relieve the pressure.   Enter cranial surgery, remove a piece of the skull, drain, put the skull piece back on a "hinge" (really on a hinge to allow more room for swelling).  The most important areas to relieve pressue are those that control are breathing and heart rate.  Hospitals can substitute breathing with machines, but the heart is just too amazing of a muscle to duplicate!

Back to yesterday...

Jo was rushed back into the OR to remove the bone fragment previously hinged completely to reduce the pressure.  Risks of the procedure aside, this surgery needed to happen to prevent healthy areas of the brain from being damaged due to lack of blood flow/ oxygen.  The distinguishing difference between his first surgery and this one is their main purpose...initially life-saving efforts, yesterday preventing further brain damage.

Damaged areas:  so after the initial injury, surgery, and admittance the hope had always been that the brain never had any areas starved for blood or oxygen.  Absent those elements cells are damaged and depending on where the damage occurs it will have downline impacts on a wide range of areas controlled by the brain.  In Jo's case, his first CT scan post op showed that some damage has already occurred to the left side of his brain, every effort made moving forward in his care plan is to prevent further damage.  It is too early to tell the impacts of last nights swelling or the initial damage, an MRI today well help determine the best recovery/ care plan moving forward.

Now let's talk about the details of the damage.  

We have decided WE DON'T WANT TO KNOW THE SPECIFIC DETAILS OF THE MRI BECAUSE:

• We already know some damage has occurred, can't change it, can't "fix it"
• It is educated conjecture at best.  It is a "best guess" of Jo's challenges for the rest of his life.  Thanks anyway, keep your guesses to yourself
• Even a "good report" leaves us as parents hopelessly praying for the Dr.s to be right.  Really that doesn't make us feel much better.
• Time will tell Jo's story not an MRI

Note:  we do expect that Docs, therapists, surgeons, etc. etc.  will use the info in the MRI to guide his recovery.  We do realize that understanding what has occurred is important to anyone treating Jo.  It's far less important to those that love Jo, nothing you can tell us will ever change how we treat him or care for him, NOTHING.  Some day we will look at the details, only to show Jo and the world what a miracle looks like!


As of this moment, Jo is resting peacefully under heavy sedation, and let's just say receiving a tremendous amount of support from the amazing technology at Mary Bridge.   We are close to him and will remain that way until we can take our baby boy home.

Sorry for the long entry, just trying to get everyone on the same page.  This is pretty factual stuff, writing the emotional side to all of this will be much harder.  It's all therapy to me.

Keep praying, thinking positive.

To my baby boy,

We love you so much it hurts.  I am only strong because you have shown me what strong is.  God has a plan for all of us, and our family especially. Keep fighting, daddy and mommy are here with you.  Rest and heal,  let your body be the miracle it is.  Don't be scared, God is holding you in his hands, you will not fall.   

We love you jojobinks, and we will get through this.

Mom and Dad