Phew!

It's 5:45 on Sat morning. I got about 4 hours of light sleep, enough to push the migraine to the back.

We've had a lousy feeling Tyler for the last week. Hindsight really is clear and a bitch sometimes. Monday afternoon was like a switch to grumpy child who did not want to eat. We honestly thought he had just a tummy ache. By Wednesday he was still punky and had vomited in the morning. We saw the pediatrician that day and still came away thinking a virus. We discussed possible shunt related issues at the visit but decided his neuro check just wasn't giving us any evidence that his shunt was the problem. We did decide that if he wasn't better by Friday, we'd look into getting a CT scan. For a while on Thursday, I thought he looked pretty good again, eating and climbing up the playground and going down the slide all by himself. But in the afternoon that switch flicked again and he was right back to miserable. He wasn't able to sleep Thursday night. He just didn't look like he could find a comfortable place. Like he had a headache (hindsight again). So on Friday morning after some discussion with the pedi and neurosurgery it was decide he should keep his cardiologist appointment in Manchester and then determined if he should get fluids to treat dehydration at Sounthern or if we should go to Lebanon. (Cardiologist appointment was to follow up on his PDA from when he was a tiny baby. His heart is "beautiful" and we don't have to follow up with them again.) We happened to see on of Tyler's neonatalogist there by chance. She took on look at him and said Lebanon. This is also the time when I noticed his shunt bump to be filling with fluid again. This bump has been fluid free for the better part of a year. Which ceremented my concerns of shunt related issues.

So, in my infamous way, a call to Ben say, "Pack it up, we are heading to Lebanon!"

After a quick brain MRI and some x-rays, it was obvious that his ventricles are larger again. Also, he has grown so much the catheter in his head was 1 was too small now and 2 floated out of place. Cath's will float around in big ventricles especially if the hole used for the cath is too big because of the previous cyst fenestration surgery. Not much of a big deal. They replaced the programmable valve and the catheter for a static valve and a longer catheter. He's had a programmable valve in which could be changed using magnets to allow more fluid to drain if needed. He hasn't needed a change since 2 weeks after the install of the shunt so they decided to ditch the programmable one and use a simpler one. We can now play with magnets a little more casanovaly.

Surgery took about an hour last night. I was able to pull on a jump suit and walk him right into the OR. Let me tell you, OR wasn't as grandiose as I imagine it from like on TV. It was a small room with a big light and lots of people in "fashionable" jumpsuits. I was able to stay in with him until he was asleep. He fought so hard against the meds, but in the end it only took about a minute for him to be asleep. When he came up after the surgery he really did look like a drunken dog. Poor boy kept trying to sit up but he would fall over because the anesthesia was making him so groggy. It took only about an hour to get him settle to try to sleep everything off. Didn't seem like he had any seizures or major problems coming out this time. He recognized me and Ben and asked for Binky and Lizzy by name within a few minutes of being back in the room.

Today is all about recovery. He will be on IV antibiotics until tonight at 9pm. Post surgery procedure. If he looks good and will eat, drink, and poop, Sunday we may be home.

AM... very very AM

After a quiet but fitful night things are starting to get rolling here in the PICU. The sun is just starting to lighten things up outside. The nurses just drew his AM labs. Unfortunately his IV is only working for incoming and not outgoing so Tyler was un-impressed when it took 2 sticks to get enough blood :-(. He is still rather loopy and lethargic, but you could easily see him trying to flirt his way out of another stick. At this point I don't think it will take him too much longer to start feeling normal again.

Midnight vitals check

(sorry for the lousy pics, they were taken with my cell in a dark room)

The nurse just came in for his midnight vitals check. He asked for a "drink", drank about 4 ounces of his "milk". He has been playing with Lizzy and his new Bear, and has asked for both by name. He is by no means thrilled by his wires and tubes, but otherwise coming along nicely.

Hopefully there will be nothing else to report till the morning.

He's out!

We just got the call the Tyler is out of surgery and he did just fine. The nurse said it was a standard shunt revision. We should see him soon and will post more later.

He's going in

More as we get it.

Waiting for the go-time.

We've had our visit from neuro, anesthesia, PICU resident etc. Signed all the permission-slips and made sure they all have his history correct. Now we are waiting for the trip down to the OR. Tyler is way off his game but resting quietly on mom's shoulder.

more waiting.

2 French-fries...

On the ride up to Lebanon Tyler was bordering on catatonic, just laying in his car-seat with a blank stare. We stopped at the only restaurant on the way (McDonalds). No sooner did we get the bag of food into the car and we hear "f-fries...f-fries". This was the first time he's actually asked for food in days. So we did what any parent would do. We caved. He ate a grand total of 2.5 french-fries and some fruit-snacks. According to the pediatric anesthesiologist that's going to cost us 4 hours of waiting before surgery.

If you're waiting for the punch-line, it's not coming. Sharron took Tyler for his MRI, and right after I took him for the x-rays. Before he and I got back to the ED room the neuro resident was in going over surgery stuff with Sharron. His IV is hooked up pushing fluids, we are waiting for our transfer to the PICU. It is going to be a LONG night.

We haven't seen the images but the docs are saying his ventricles are definitely bigger. They suspect a shunt malfunction. The plan is to test each piece of the shunt and replace anything that needs it. We have known an event like this was a possibility since the shunt went in. The average shunt lasts about 2 years (we are at about 18 months now). We have been quietly hoping that he would outgrow the need for a shunt and this day would never come.

More soon.