Surprise!

So Tyler and I took a quick detour to Lebanon on our way to the beach. The past couple of days he's been a little off. So after a quick call to Neuro, it was decided we should get a quick brain MRI just to be on the safe side.

Tyler has quite the sense of humor. We all expected larger than baseline ventricles because the last MRI showed them re-expanding. No! The ventricles are almost collapsed again. This is where the programmable shunt becomes Neat. All we had to do was reprogram it. We go back up first part of next week for another MRI to make sure the fluid is moving back into the right direction. Never a dull moment.

Doing a Happy Dance!

Today was a good day! Tyler had another MRI (believe this is his 8th over the last 3 months) and a visit with his surgeon today.
Drum roll please. His scan looks much better than the last one. Not quite to his baseline but moving nicely in the right direction. We want things to move slow since we are talking about brain matter being shifted around due to fluid dynamics. His ventricle size has come back up, about half way between his baseline and slits. The fluid around the outside of the right side of the brain is almost completely back to normal, the air pocket is gone, and the fluid on the outside of the left side of the brain is also much smaller. The surgeon drained the fluid off the outside on the right side when she changed the valve in the last surgery. More over the surgeon was very pleased to hear GI was very happy that he gained 1/2 a pound since right after the first revision surgery. Another words, despite not feeling well and having 2 more revisions, Tyler gained some weight on the days he did feel well. I was also able to tell the surgeon that we haven't had any "bad day" over the last two weeks. He's eating very well for me, and not grumpy, the wobbles are gone, he's able to climb better than before this all started. So for now she doesn't need to see us for 3 months unless Tyler starts to look funny again. Wahoo!

On a sad note, we had to say good-bye to one of his neurosurgeons. We haven't seen her a while other than in passing, but still sad to see her leave Dartmouth. We wish her all the luck in her new adventures. Thank you!

HOME!

We are home! We are home early for dinner, bath, and bed. We are home with only 2 doses of IV antibiotics in and one dose of oral antibiotic to be taken at home. The entire car ride was on big conversation with Tyler. He recited what dogs, cats, horses, frogs, and cows say. Requested more food than an army. And demanded, pleaded, and begged to be let out of his car seat and hugged. Once home, he and Rachel twirled around dancing until both fell down and the rest of us where dizzy from watching them. He kept telling us all night that he was "happy!" and had the biggest smile on his face. The drunk wobble gait is gone and he is so bright eyed. He's now in bed winding down and I expect rather early to hear "MOMMY, BOTTLE!" What an amazing kid!

Off to MRI

Poor boy was wheeled out screaming "Mommy!" to get his MRI. Ben went with him this time. The surgeon was in the this morning and said she'll be able to look at the MRI soon after it's taken hopefully.

Dispatches from the night shift.

Tyler is resting comfortably now. The same can't be said for an hour ago. I walked Sharron to the car so that she could go to David's House and get some sleep. When I got back to the room Tyler was just starting to stir. He very quickly went from stir to fit, then to the maddest I've ever seen him. He wanted water, but would not calm down long enough to drink without a boomerang effect. To make matters worse the attending decided to pull some labs to see it was anything more significant than a mad little boy. The fear was that it was possibly an electrolyte imbalance related to the extended NPO period. 3 sticks later they finally struck blood.

I just got the results and his sodium and glucose are both low (not to dangerous levels). He's on an IV with sodium so that should recover nicely on its own. We have been giving him water and we need to advance to his formula to get the glucose moving. From what they tell me in PICU most patients would be on D5 or D10 at this point (IV solution with sugar) but that is not the procedure with neurosurgery patients. I'll have to remember to ask why when I see a resident tomorrow.

While they were trying to pull blood Tyler and I had a nice chat about how he wants to see his kitty "Meow Meow" and doggy "woof woof" and sister (He hasen't decided on a noise for her yet;-).

Hopefully that's it for tonight.

In PICU, Surgery went well.

(Pre OP, NPO for 18 hours and still smiling)

Tyler is out of surgery and recovering nicely in his PICU room. I can't help but think we've been in this room before, oh wait we have.. Everything went fine, we got to see a tired but happy Neurosurgeon coming to talk to us in the waiting room again. At the moment he is very groggy, he should be up and asking for food any time now, followed by a long night of sleep. Although with the anesthesia he could sleep through most of the night.

The surgeon replaced his valve and we are back to a programable. While it is more likely to clog, we can now make changes to the flow-rate without surgery. Life just got a bit more tricky at home, we need to move any magnet related toys out of Tyler's reach. Things are also more complex if we have to take him to the ED, we will have to make sure they can re-program him before he gets an MRI. The hope is that with the ability to fine-tune the shunt we can re-inflate the ventricles and get back on track soon.

Neurosurgery has ordered for another quick-brain MRI tomorrow hopefully we will like what we see.

(Post-Op sound asleep)

Ugh more waiting.

NPO (No food) midnight 24:00 yesterday
Check-in 12:45 pm today
Move to OR 17:10 tonight

I don't know how he did it, but he has been GREAT for us all day!

The current plan is to replace the valve with an adjustable and crank it most of the way up. Hopefully that will re-inflate the ventricles.

More updates as we get them.