I have two brains. One that I call my “OT brain”. This brain is able to sort facts, dates, procedures. When I use this brain I can calmly and collectively explain what is going on with Jack. Very little emotion is needed here.
My other brain I call my “Mom brain”. This is the one that ruled today, when I was woken from a short nap (I hadn’t had coffee yet) from a phone call from Boston with the MRI report from last week.
Dr. Robinson was very nice. It was difficult to tell how serious everything was. I took her lead and listened to what she had to say, all while my mom brain was breaking down and I struggled to process all that she said.
The things I can recall:
The report showed that there has been quite a bit of fluid that has built up since his scan in July. She said this was “worrisome…” There are two kinds of hydrocephalus: 1) When there is a blockage in the brain that causes the fluid to pool or 2) When the body has trouble absorbing the fluid. The latter is Jack’s problem. They are unsure why his body is not absorbing the cerebral spinal fluid (CSF). So, they are recommending that we go to Boston for an endoscopic procedure that will hopefully help alleviate the pressure that has built up since surgery and may help his body to take over with absorption.
This is the last attempt to avoid a shunt.
We will need to stay in Boston for 2 weeks for close observation to determine if this procedure will work or not. It has around a 50% success rate.
I’m not sure how dangerous it is. I’m not sure how long we will be hospitalized for… I’m not sure if it will work.
I am sure that God has this though. Jack is healthy! The healthiest he’s been in months. He’s happy… the cost for our hotel is the exact amount we had in our “don’t doubt Jack fund”. When I got the news, a teacher from “Early on” was here and was able to stay with us for about an hour reading books and taking care of my kids while I was on the phone with Boston figuring out the details.
I’m not gonna lie. I was seriously rocked this afternoon. Even though I knew this was probably going to happen… I still wasn’t really expecting it. There’s just no way to really prepare for such a phone call… “Mame’ your baby boy’s brain needs surgery… Next week is too late…”
So, I’m grateful that God was able to prepare for me. I’m terribly weak…good thing God is strong!
our family is AMAZING! I am eternally grateful how our families have surrounded us this year. Especially with Lucy. It breaks my heart to leave her again. She can’t wait to go to Nana’s house though… I am so thankful there are so many people to love on her and us everywhere we go. So thank you… a million times thank you to all of you who pray for us, love on us, support us…
I’ll catch you up when I learn more!