Going Home!

It's Sunday evening and we're going home tomorrow morning!

Yesterday's surgery went very well. They moved Cole's shunt site to the right side (which is where it was with his first shunt) and his incisions look really good. He came out of the anesthesia really well and has begun laughing and tapping on his chin and banging on his piano again. The surgeons said he might have a little more postoperative pain this time as they had to run the shunt line under his scar from his craniotomy (in June). So last night we had the nurses give him Lortab as regularly scheduled so that he could sleep well, and he did just that! Today we have mostly been given him Motrin and he has done well on that. We gave him one dose of Lortab. Grandma Jacquie came up and held him for a long time and they were both very, very happy. We asked the doctors to let us stay one more night, just to make sure Cole is good and stable to go home. In the past, when we have gone home the next day after surgery, Cole has made sure that we come right back . . . via the Emergency Room. They were glad to oblige. We are very much looking forward to going home tomorrow morning.

Saturday Morning Surgeries

It looks like we lucked out, again. Our neurosurgeon, who was on holiday when we arrived, returned mid week & happens to be on call today (Saturday). This also happens to be the first day post his 10 day infection-free window. We were sure when we started calculating the date back on Wed., 12 Aug (day 1 of our infection-free window) we wouldn't be back in surgery to internalize the shunt until Mon or Tue. But they surprised us (pleasantly) when they suggested we could do surgery today!

Honestly, even when they suggested the idea last Thu., we were cautiously optimistic just in case something came up ... which almost did ... that we would still have to wait.

And Cole's back to his old self trying to get others to adjust to his schedule and yesterday was no different. Shawn was holding Cole after his CT scan (to provide a baseline picture of his ventricle size and shunt placement for surgery). He noticed that one of the stitches holding in in his external drain was missing. The surgeons place the stitches in the shunt tube and to his head (similar to what they do with the PIC line) to keep it in place. He called in our nurse to confirm what he thought he was seeing, which she did. She went out to call someone from the Neuro team and luckily for us, one of the key members of the team happening to be walking into our Pod (we're truly blessed). She, upon taking a look, found that both of his stitches were missing. That's problematic because [1] we don't know how long they've been broken (although we assume a short period) [2] we don't know if his external drain has now wiggled it's way out of the ventricles, rendering it nearly useless for draining the extra Cerebral Spinal Fluid (CSF), [3] if it hasn't been draining, how enlarged have his ventricles become.

Sydney (Neuro Team) acted quickly and with Shawn still holding Cole stitched the shunt tube that was exposed on the top of his head while in Shawn's lap, with Shawn holding Cole. Cole (and Shawn) did really well. He didn't cry until near the end, but then was so upset he had a major breath holding spell. It's quite a site to see and now our pediatrician and Sydney have both had the 'pleasure' to be here when one happens. It ended uneventfully (no code blue) and as always he was quite worn out and took a long nap. He woke up in the same good mood he was in when he started the day and was laughing and banging on his piano and tambourine.

Almost all of our Neuro team stopped by several more times that afternoon and early evening checking him (looking for visible clues in his behavior) and checking his drain to confirm it was still running. They decided we could wait until Sat AM to internalize the shunt and our surgeon (who we really adore) gave Cole specific instructions not to have any events in the middle of the night. Luckily for all of us, Cole (and his drain complied).

So he's off in the caring hands of our anesthesiologist, nurses, and surgeon and as we said a prayer last night for Cole we also asked that those involved might be alert and skilled as they proceed with this procedure this morning. We hold faith that we'll see them all soon and he'll be laughing with us again soon (although that hair make take a little longer to refill in (in those spots). And we'll keep you all informed as soon as we hear anything.

Thanks as always for your prayers and constant support.

Beetoven's Got Nothing on Us...

Cole continues to enjoy his little piano. He has a really cool one for home with about 5 times as many keys, but this one is good for trips.

Cole on the Piano from T Cooper on Vimeo.

We've noticed even the doctors and nurses taking a chance to stike the 'ivories' when they stop in to check on Cole and us -- apparently Cole makes it look like so much fun everyone wants to get into the spirit.

The nurses even tolerate having the door wide open for all of his pod mates to enjoy. And Cole has expanded his musical repertoire to the tambourine thanks to his Uncle Brenden and Aunt Jeni and Jordan, Autumn, and Matthew

Well . . . I can kinda do it

Ok, well . . . I can actually post the pictures. I just cant seem to organize some comments about them. Teri is the tech specialist. I'm the demon slayer as she so correctly pointed out (WoW reference). So here are some pics, no explanation and lets see how that goes.

See, I told you! I wanted those pictures to come after the text. But noooooo! I also wanted to add more pics, but it wouldn't let me. Blogspot hates me, I'm gonna eat some worms.

Oh, and i just noticed they are in reverse order from how I entered them. Cursed I tell ya!

Counting Down!!!!

We're counting down to Cole's shunt being reinternalized. His CSF samples have stayed clear since a week ago Wednesday which would put us on schedule for reinternalization on Saturday. We figured they wouldn't do the surgery until Monday, but as it turns out Cole's Neurosurgeon is on call Saturday, so he has scheduled the surgery for Saturday. This would mean that we would go home Sunday or Monday. They also report all the markers for infection have continued to decrease nicely (e.g., white blood cell counts). Cole does not seem sick at all. The EVD makes it a little cumbersome to move him much, but he is happy and banging on his piano and tamberine, and playing with his mylar balloon. We are very excited to be going home. We just wish all the other kids were doing the same. Shawn was going to post some pictures and video, but he is Blog-challenged. We will work on it together tomorrow.

Good News!!!!!!!

Wow has Shawn been naughty! Leaving you all hanging on that last post. So lets fill you in.

Ok, so his infection was pretty nasty and he had some ugly fevers the first couple of days. They took a sample of his Cerebral Spinal Fluid (CSF) in the ER and then they take a new sample every day. Each day the look at the sample in the microscope to see if the can see any bacteria. I think of this like the fast Strep throat test a person might get at the doctor. Its kinda a rough estimate on how the infection is doing. Then they put the sample in a petri dish and grow it for 2 days. This is a much more definitive test. So the night we came in, of course they found nasty bugs through the microscope and started him on a broad spectrum antibiotic. However, after 2 days, when the petri dish was ripe, they could tell what the specific bacteria was, and then they switch to a much more specific antibiotic. And that's just what they did. The nice thing about the specific drug is its not as hard on the rest of his system (e.g., wiping out all the good digestive bacteria in his gut which gives him nasty diarrhea.

So usually, they expect a pretty quick response to the antibiotics. But Cole was responding slower than they liked. So they ran some tests to see if he had any pockets of infection in his heart (ultrasound on his heart) or in his ventricles or his skull bone marrow (MRI). And guess what?!!!!, We just got the news this Thursday morning, all tests came up negative!!!! We are very excited about that because they were talking about some pretty nasty sounding procedures to clean out the infection if it was in his bone. Whew!!!!!!

So the typical procedure when a person gets a shunt infection is:

1. They externalize the shunt (done)

2. They begin collecting daily CSF samples and testing them.

3. When they find a 2 day test that is clean, we begin counting down for 10 days of more antibiotics

4. The reinternalize his shunt and then we go home the next day or 2 days later.

So we are hoping, since yesterday's petri dish sample is clean so far, that it will be clean tomorrow and we will start our 10 day countdown.

Some more good news. We were able to reschedule our vacation to Bear Lake for the end of September. Should still be some good sailing that time of year.

An interesting story: A couple of days into our recent stay, we ran into someone Shawn used to go to High School with, Dave Topham (and his wife Victoria). They also served in the same LDS mission in Tampa Florida and went to the U of Utah at the same time. But they had not seen each other in probably 15-20 years. Turns out they have a little girl in the hospital . . . 3 DOORS DOWN FROM US! Also, poor girl, has an abscess in her brain and so has an EVD (the external shunt just like Cole). Also, they are only 3 months different in ages. How about that for some coincidences. Its nice to have people you can commiserate with. They are great people. And we got to meet their adorable 16 yr old daughter last night.

(Guess what? I'm playing with different font colors)

Yesterday, Grandma Jackie came up and watch Cole all morning so Shawn could go in and run his Wednesday group. When he called to let her know he was on his way back up, she said she and Cole had been laughing and singing all morning. He started laughing at the sound of Shawn's voice on the phone. So we are seeing the signs that he is feeling much better. Right now he is playing with his mylar balloon and we are listening to Otis Redding's Knock on Wood.

So his recovery from the infection has been a little slower then we would have liked, but, he is definitely responding and getting better. Thanks again to Jim and Kris and their family for taking care of the dogs while we are gone. And yesterday there were 3 people from our neighborhood fighting over who got to mow our lawn. We are so incredibly blessed and we express our gratitude to Heavenly Father every night for each and everyone of you.

Things Don't Always Go as Planned

Teri has been planning for weeks for our Celebrating the Family get together with Cole's Birth and Adopted families and friends. She found some very cute party supplies with a Zoo theme and has been putting them together for days. She spent most of Saturday morning popping up a bunch of popcorn for the party and we bought two 6 foot sandwiches for the party. Also we know that Tami had put a lot of energy into planning for this event and had a lot of family and friends that have loved hearing about Cole's adventures and so much wanted to see him. All was going well until . . .

About 10am Saturday Cole threw up a few times within about 30 min. That in itself is not too concerning as he does have reflux that occasionally results in throwing up. However, he was quite fussy afterward and was having a hard time being settled. We went to the park and began setting up and he was still fussing. Family and friends began showing up and people held and soothed him and he seemed to be calming down, but still was not his happy self. We had taken his temperature about 11:30 and it seemed to be normal. We took it again about 1:30 and found that he had a temp of 1o2.2. We felt so bad about needing to leave in the middle of the party, but the vomiting and temperature are both signs of a shunt infection. We went up to Primary's ER and the took a sample of his spinal fluid and began trying to get his temperature down. They found infection in his spinal fluid which means 3 things will happen over the next 2 weeks. They externalized his shunt Sunday Morning and it will stay that way for weeks. They are fighting the infection with some pretty heavy duty antibiotics. And when his fluid clears up they will reinternalize his shunt and we will go home pretty soon after that. We actually had a trip planned to Bear Lake for that week - we will be trying to reschedule that tomorrow. Thanks to everyone for your prayers and support. We love you all.

Birthdays are Best Spent in the Dark

Having Cole's birthday in August generally means some pretty warm days. His skin is so fair and not being as active, he doesn't tend to tolerate the heat as well as most -- meaning he gets bright red cheeks (and any other exposed skin). So we've compromised by finding 'cooler' ways to celebrate birthdays.

Last year was such a hit, we decided to do a bit of repeat this year and went to see G-Force 3D.

It's sort of James Bond meets Wild Kingdom (well maybe not Wild Kingdom but Wild Hamsters). We had treat bags with small trinkets and goodies (see Tanner above enjoying his whoopee cushion)

and of course the 3D glasses, courtesy of the theater. (these shots were taken in the dark... Shawn did pretty good, I think, especially considering the subjects in the frame!)

We headed over to Marie Callendar's, initially for pie - but everyone was so hungry because we ended up going to the later show so we started with a bite to eat and ended the evening with pie -- of course (this is a pre-pie picture).

We had a super time and are so glad so many were able to go (we missed you Jim & Kris & Grandpa Steve and Grandma Rosie ... and everyone else for that matter ).