Tuesday, December 28, 2010

The Shunt is Shunting! YEAH!!!!

Cece had her neurosurgery appointment follow-up today....and...she rocked it! Her shunt seems to be doing exactly what we/she need(s) it to do. Her head circumference is still in the 97th percentile, but the doc said she is not concerned about that at all...she'll grow into it. Her next follow-up with them is on January 10th.

You know what's so cool about this shunt thing is that's it's so "controlable"...and anyone who knows me, knows I like that factor. If she needs more pressure...dial it down...if she needs less pressure...dail it up. The doc was also able to "flush" it just by pressing on a certain spot on it...amazing.

I'm anxious for her appointment next week with the Early Intervention lady. She comes to the house to evaluate CeCe's needs and then we start in-home treatments based on that evaluation...pretty awesome.

So we start the new year soon and I have much to reflect on...I need to get my head together and really think about resolutions (or not). I kind of feel like we are still celebrating Thanksgiving with all I have to be thankful for. To that end, I've been asked if I plan to continue this blog in the new year and I do...it's cathartic, really and I've found myself constructing posts along the way when something of note occurs....so, yeah, I'll keep it up.

Anyway, I'll work on something clever and meaningful for next post...or, I'll just try and post something funny! :)

Saturday, December 18, 2010

Vegas versus Branson, Missouri

So I posted a long time ago, when we were in Philly, that the NICU at CHOP reminded me of Vegas...with all the bells and whistles. To expand upon that analogy, the Progressive Care Unit at Carolina's Medical Center-Levine's Children's Hospital (what a motuhful!) is more like Branson, MO. Vegas is all about the headliners...Cher, Celine, Elton...Bransen is all about, well, ummmm, not being Vegas. It's a tough comparison going from creme brulee to vanilla ice cream.

Although the nurses here are friendly, they seem to be neither as well informed nor as educated as those at CHOP. For instance, Cece's monitors were going ballistic last night....for...20...minutes. Then they just cut off. Thirty mintues after that, someone came in and when we asked if she was ok, did we need to do anything...etc...they laughed...LAUGHED...and said that the monitors weren't getting the right readings so they had cut them off at the nurses station...information I would have considered invaluable 50 minutes ago.

CeCe is sleeping now and we are waiting for the doctors to come by for morning rounds...she had a rough start to her night. As the anastesia was wearing off she was acting like a crashing heroin addict...she was screaming and scratching at the air for minutes at a time and then would fall silent. She couldn't keep anything down either. It was really hard to watch (and listen to). They gave her some pain medicine and that kicked in after about 45 minutes...she squirmed through the night but seemed to settle down. We got her to eat, and more importantly, keep down, about 2 oz this morning at 7:15am....half of what she normally eats. We'll try her agian soon!

Hopefully, we can check out of Branson and head on home.

Sidebar: CeCe is up to 9lbs and 1 oz...yeah! But more importantly, her head circumference was up 6 cm from the itme she was released from NICU to 42cm...after the surgery she was down to 40cm....THAT IS GREAT NEWS!

Friday, December 17, 2010

Out of surgery

Once again, Cecilia has amazed us..she is such a trooper. She hasn't eaten today since 5:30am (pedialyte at 7:30am) and she never...made...a...peep. We arrived at the hospital at 9:30am and everything was on schedule like clock-work. She was admitted, vitals were taken, and all the different docs and nurses showed up pretty much on time.

They took her to the O.R. about 12:30pm and let us know at 1:15pm that she was all set to start. The whole operation only took about an hour and a half and they let us know that there weren't any complications.

We got to see her abot 2:45 in the recovery room...she pretty much looked dazed (maybe a little confused)....and she is still slowly coming out of it. We can feed her as soon as she is ready to go...I hope that's soon.

Anyway, to sum up...we are probably here just until tomorrow, but time will tell. By the way, our cell phones don't work in the room so we can't return texts or check voicemils (Thanks, AT&T)!

Tuesday, December 14, 2010

Shunting, it is.

We are back from the neurosurgeon this morning. The one that we will be using going forward (he had been on vacation last week). He seems to be a very nice man and has done tons of these suregeries over the years. He introduced himself to us, and put his hand on CeCe's head and said "This child needs a shunt."

Brian and I are ready (or as ready as we can be) for this. They weren't able to get her in for Wednesday so we are on for this Friday for the procedure. She is set for 12:30pm assuming everything else is on schedule (and WE'VE ALL BEEN THROUGH THAT BEFORE!) She can't eat after 7:30am and the surgery isn't for abother 5 hours....this should be interesting.

For the faint of heart....STOP READING HERE. Those who want detials...forge ahead.

He will basically drill a small hole on the back right side or her skull and feed in the drian tube that will he will feed down her neck and into her abdomen...where the CSF (cerebral spinal fluid) will be reabsorbed by her body. This is called a VP Shunt (Ventriculoperitoneal) vs the other option for those that can't tolerate this type called a VA Shunt (Ventriculoatrial...i.e. it empties into the right atrium of the heart...yikes! I'll take one VP shunt, to go, please!)

The shunt itself will be under her skin and eventually will just be a lumpy bit covered by her hair. It's programmable and magnetic, which means they can make adjustments from time to time with magnets to control how much fluid flows in and out and how quickly. Sound scary to you? It does to us too, but if she needs it, she needs it.

Her follow up will be every 4-6-8 weeks at first so they can get everything functioning the way it needs to be....then we'll just keep a watchful eye for any signs that the shunt needs revising. Shunts are persnickity...some last 2 years and some last 20 years...but eventually she will have to go through this again...yuck.

So, other than that...(brain surgery for your 3 week old)...not too much going on here.

Monday, December 13, 2010

Not much of an update, but still...

Just thought I'd throw this out there. CeCe is set for her next CT scan now tomorrow at 9:15am rather then 1:30 pm. They DO NOT have her on the surgery schedule yet for Wednesday, but have assured me that she will get the surgery if she needs it, when she needs it. I'll update tomorrow!

Tuesday, December 7, 2010

To shunt or not to shunt...

Neurosurgery appt was a little rough today....we waited for 1.5 hours just to be seen and then when we were seen, the doctor said he was ready to put in her shunt. We knew this was probably coming, but we still aren't ready to do it. We met him in the middle with this...he said there is a chance that her fluid will stabalize, but he didn't seem too confident. He ordered an immediate CT scan....and after the office ladies argued with the insurance company, we were able to send her in for one right then.

The scan showed that her ventricles have enlarged again and he is worried about pressure on her brain. So, because we aren't just ready to go ahead and do the surgery, we made an appt for next Tuesday when they will repeat the CT scan and see where we are then. If we all agree at that time, her shunt suregery will be next wednesday. Again, shunting is the case with 80% of SB kids...she's just so little and has been through so much.

On a brighter note, we also had her urology appt. today...he just did a quick check and gave her the thumbs up...for now. He has also ordered another xray and u/s of her bladder and kidneys next week and scheduled a f/u appt in 2 weeks.

All in all...nothing really new...just progression of what we already knew.

Monday, December 6, 2010

Carolers and other Christmas cheer

With all that's been going on with us lately, it's easy to get lost and forget that we are in the holiday season.

We were sweetly reminded of this yesterday afternoon when Miss Tina, Miss Sallie and Miss Tammy brought a group of children by to carol at our home. This was such an unexpected joy....we loved it!

We also discovered that our great neighbors had not only decorated the OUTSIDE of our home, but some sneaky little elves snuck into our attic and "decked our halls"! What a great gift!

In other news, Cece had here first of at aleast 3 doctor appts. today. We have found a really great pediatircian locally that has 10 experience dealing with Spina Bifida kids. He was great to us (let us come to the office early to avoid all the sickies) and showed us great interest and concern. He is just going to be her general doc. She has her neurosurgery appt and urology appt tomorrow...Her head circumference is on the rise and Brian and I are worried that a shunt is in the near future. Yes, we always knew this was a possibility, of ocurse, but potentially facing another surgery of this magnitude with her is tough to realize. So, please pray for her tomorrow for these appts.

Keep the faith!

Saturday, December 4, 2010

Home Sweet Home

We actually had a great trip home...no delay at the airport at all and a flight that was only half full...mostly with Hokies and Seminoles headed to the game tonight. :)

Cece was WIDE-EYED the entire trip...the most we've seen her eyes at one time since her arrival.

Our awesome neighbors not only decorated the outside of our house with Christams lights, but some sweet little Xmas elves also put up our tree, stocking and other decorations...it was a regular winter wonderland when we arrived.

a HUGE thanks and shout out to our friends Vicki and Tom Pleur for not only picking us up at the airport but getting special passes to meet s AT the gate to help coordinate everything...AND providing a yummers dinner! Happy Bday TOM!

Also to the Chirokas family for filling our fridge and working out meals for us for ONE WHOLE MONTH...what a blessing!

Exhausted but happily home!

Friday, December 3, 2010

Seacrest, Out!

This is a totally random post...but....guess who stopped by the SDU this past Monday....Ryan Seacrest!....haven't worked out the details as to why yet, but why couldn't he have come a week earlier? Bummer! Anyway...thought it might be nice to post something light and airy for a change...


Thursday, December 2, 2010

Peace out, CHOP!

WE ARE OUTTA HERE! During rounds this morning, the docs decided CeCe is literally good to go and we will be discharged later this afternoon...I wish we could come home tomorrow but we are all set for Saturday!

Can't wait to be hommmmmmmmmmmmmmmmmmmmme!

Wednesday, December 1, 2010

CeCe had her Video UroDynmaics test today...this is a biggie for SB kids. It measures pressures in the bladder to see if they can empty it on their own. Most (read:all) SB kids have bladder and bowel struggles. She did really well with this. She is able to void on her own, they think (of course...they NEVER commit to a can/cannot here!) that she can. All that means is that is how she is functioning "today". They will repeat this test at 12 and 30 months and of course our Urologist at home will start monitoring it as well when we get back.

Speaking of which.....drumroll, please....we are being discharged on Friday....WOOHOO! We are basically thru with all the testing and just have a few things left on our discharge checklist that we will complete tomorrow. You can tell things are winding down there for her. She was one of 3 babies that her nurse had last night...she used to be one on one or one to two. Her bedside was realatively quiet today too...not NEARLY as many people poking and proding her today....kind of nice.

The NICU is a tough place...for babies and parents. There are 75 beds here and almost 300 nurses alone. In the nighttime, after shift change, it is really a very quiet place. A baby occasionally cries out and is tended to, but as the babies get better, like CeCe, you see them leave with their parents who are almost skipping out the door headed home to normalcy. Last night, life flight came in with an 8 day old. I wondered what had happened with this baby and at the same time, I'm sure I don't want to know.

We are ready to be home.