Thursday, June 9. The day the doctors decide if its necessary for Lincoln to have a shunt.
This morning we shut off Lincolns clamp to his drain that controls the pressure of fluid output. His pressure stayed at 10 for the morning. (in my last blog I went over the numbers, Doc wanted him to stay 10 or under.)
He went into his MRI around noon. His incision leaked the first time he had a scan, it did not leak this time.
After the MRI his pressure went up to 11.
“His MRI looks good, his ventricle size has not changed.”
He had an awful nights rest- the nurses are in quite a bit between checking his drain,vitals, oral medication and diaper changes. He had 3 really hard naps today.
After his second nap he puked quite a bit.
“Since he hasn’t leaked, the pressure has stayed on the normal side, and the MRI looks good, we will be taking the drain out tonight and watching him the next couple of days, he doesn’t need a shunt.”
Our hearts couldn’t be filled with any more joy.
We see the NP a lot more than his surgeon because he is doing surgery’s all day and he is just a busy guy- he is developing the new helmet for the NFL to prevent concussions 😉
His neurosurgeon visited us this afternoon to talk about the plan.. “take the drain out, watch him for a day, send you to a nearby hotel for a couple of days and see if he does ok, and then continue to follow-up with us.”
“Let me check the pressure one more time before I head out…20, wow, that’s a really high pressure, He puked today and was super lethargic.. these are all signs that he isn’t handling the pressure and that his body isn’t absorbing the fluid.” As Lincoln started to move around in bed his pressure reached the upper 30’s, which is dangerously high.
With that being said.. Lincoln will not be able to live without a shunt.
We tried everything possible that we could to rule out him needing a shunt.
The OR room is super booked tomorrow but his surgeon is going to try to squeeze him in. If not tomorrow it will be first thing Saturday morning.
We will be staying another 24-48hours after surgery depending on how it goes.
They will take the existing tube that was placed into his ventricle, and connect that to his shunt, the tube connected to the shunt will run underneath the skin behind his ear down to his abdomen area.
We have a lot that our family needs prayer for:
- Surgery and everything that goes into surgery-the docs, the procedure, no infection… pain management after..ect.
- Adam and I, we are very home sick and miss Zion and Ruthie so much! We are very drained and miss home cooked meals and our bed.
- We were told that before he turns 18 he will need 1-2 surgeries related to his shunt. When the time comes that he needs surgery we will have to act very quickly, Lincoln Adam and myself will have to be the judge on when he needs to see his team to be evaluated. Please pray for us to have the knowledge of when to go.
- Pray for our other two kiddos to adjust to these last couple of crazy weeks.
We are officially getting married to the Seattle Children’s Hospital Neurosurgery team. I hope genetics, ENT and Dermatology don’t mind 😉
Lincolns Journey just got that much longer…
Again, we thank you all for your donations to our family.