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.

3rd times a charm, Right?

Today I took Tyler up to Lebanon because the last couple of days he's been acting a little off. Kinda looks drunk when he walks. He's been very clumsy and tripping over everything. All very subtle and we were having a hard time justifying bringing him up to Lebanon. He has had a bit of a runny nose and a lot of wheezing (which I think is allergies). We weren't sure if he wobbled because he has fluid in his ears or if it was a neurological thing. But I decided after last weeks MRI, we should go there first this time.

After a long 2 hour drive of listening to Tyler say "mommy" in various tones and volumes and having to answer "Tyler" back, we had a quick MRI. You know you have had a lot of MRI's when techs who are not working the machine we had today came out to say "hi, Is Tyler ok?". Tyler wasn't interested in saying "hi", all he wanted to do was leave. He knows the techs on site when they come to bring him back to start fussing. I think the worst part for him is the sticky ear muffs they put on him. That is the only time he cries is when those are put on and then pulled off. They are very sticky and probably hurt like a high quality band-aid and pull hair. Once he got into the bore, he settled down and patiently waited for the 5 minutes of scans to be complete. Then upstairs to the play room for a bit while we wait for the surgeon.

We met with the surgeon and looked at his MRI together. I believed I saw her frown today for the first time. The shunt has taken too much fluid out. His right ventricle (it's were the catheter is) has almost completely shrunk down to collapse. The brain matter is also collapsed with it and the fluid that is now on the outside of the brain is being sucked into the middle too. Good news, no hemorrhaging or areas that look like they have bleed. Bad news, surgery tomorrow for another shunt revision. She is going to put a different size valve onto the existing catheter. This new valve will take out less fluid and allow the ventricle to become plump. You want plump ventricles with a shunt. If the ventricles are too small, the shunt tends to malfunction a lot, too large and you start having symptoms of hydrocephalus.

So, surgery tomorrow for the 3rd time in so many months.

Tyler's 2nd big wagon ride is just over a week away!

http://www.marchforbabies.org/personal_page.asp?w=4081621&pp=3110310&ct=4&u=SharronBenRachelTyler&bt=2


Just over a week before Tyler takes his 2nd wagon ride around the hospital for the March for Babies Walk! Just about every day we are walking around the neighborhood in with the wagon enjoying every second of it. It's not too late to sponsor Tyler. Hope for a beautiful day for us too.

A reminder of Who is driving this Bus!

Tyler is driving this bus!

Once again I was greeted by a cheery neurosurgeon trying hard not to look concerned. She asked about how Tyler was acting which I quickly reply good, how are his pictures. Tyler's shunt is working! Working almost too well. So well, he surprised the surgeon. His ventricles are about half the size they where two weeks ago. And what's more, there is now a lot of fluid surrounding the outside of the brain just under the skull. The concern comes in with bleeding inside the brain. With such a big shift in fluid, there is a high possibility of strained blood vessels breaking. Thankfully, Tyler's MRI does not show any signs of a new bleed today. We spent a good half hour just chatting and watching Tyler be Tyler. The surgeon was amazed at his vocabulary and how well he communicates. He's asking for things specifically using 3 word phrases like "I want a bagel" or "What is this" even adding the appropriate please and thank you to things. He was also busy climbing up and off the chairs and scales and "jumping" (we look like we are jumping but one foot still doesn't quite make it off the ground). The surgeon was very pleased and excited to see how well he's doing.

As far as the plan, watch and see. We will go back in about 6 weeks for another MRI. If before then he has any weirdness, we are to get him up sooner for a MRI. Weirdness would be loss of appetite, fever, vomiting, (add any unpleasant symptom you feel here). For now we watch. If he starts having issues, he may need to have the valve changed out to one with a higher pressure which lets less fluid pass through. Yup that would be another shunt revision. So we are going to sit back enjoy our two year old and take it day by day, turn by turn.