Saturday, December 29, 2012

Christmas and NYE

Hoping that everyone reading this had a very merry Christmas this year! December 21st came and went and the world didn't end, but that didn't stop us from throwing a Mayan End of the World party to mark the occasion.  Ben, Alex, Dorian and Wynn had fun hanging out upstairs with Marcia and Dori's nurse Stephanie while we adults had fun downstairs with 30 of our closest friends.  We introduced them to "fire water" (aka Aguardiente) ... I'm always nostalgic for Colombian Aguardiente because it reminds me of my dad (Papi) and all his brothers sitting around telling stories and doing shots of it.

The big buzz on Christmas morning was that Wynnie woke up at 3 AM and saw Santa!!!  When Chris woke up super early on Christmas morning, he says that Wynnie held up his hands and said "SANTA!".  Ben and Alex were amazed that Wynnie saw Santa... it's definitely been a big month for the Wynnster!  :)   This week was his 2 week follow-up and the neurologist said Wynnie's head looks great and his abdominal incision is healing nicely.  It's pretty amazing that in these 3 short weeks, his whole demeanor has pulled a 180.  He happily babbles more, more proactively social, laughs more, reaches for toys and rolls around more, and just overall more awesome than ever.  We are so happy that this operation was a huge success and the old Wynnie is back.

Dorian is having mini meltdowns in the mornings ... he is accustomed to eating, getting dressed and heading off to school.  Since school is out, we stay home and he is NOT a homebody.  He is a worldly man that yearns for hustle and bustle of the streets.  He has had to settle for trips to Target to satisfy his need for action. One of his highlights before school dismissed was having the school wide Christmas sing-along.  Wynnie snuggled with his teacher the whole time and didn't care for all the singing or dancing, but Dorian on the other hand kept looking around, bouncing his body to the beat of the music, and yelling HI in between songs when it would get really quiet.  He is destined for Broadway. Since Christmas Eve he keeps on saying "HAPPY BIRTHDAY!!" so we think he is referring to Baby Jesus's birthday.  I'm glad Dori keeps Jesus as the reason for the season!

Ben and Alex were gentlemen and took me out to dinner the night before my birthday.  We went to Masu Sushi and enjoyed a delicious Hibachi dinner. They were very proud to pay for the dinner with the money Chris gave them.  Alex was happy there was cash left over, he told me I should keep it and buy myself something.   I said "Don't mind if I DO!"  It hadn't even occurred to me to keep the change until Alex suggested it... that kid has street smarts.   Chris stayed home with the babies and rested up because the next night he took me out to a nice dinner to Del Frisco's (YUM!) and then to the Mavs game.  We had a blast and sat next to a family from Nebraska that were visiting town for some medical exams their son needed (he received a serious concussion playing football).  Small world because he plays for one of Chris's childhood friends in Nebraska (Scott Amen).  What are the odds?  I told Chris we are very blessed to live here in a city where we have so many choices of top notch specialists for the babies -- where other families have to travel for hours to have their children treated by the pros.  So blessed!

The only down side to Christmas this year was that Chris's dad Dave fell and broke his hip.  He fell on December 20th and is still recovering in a skilled nursing rehab facility.  But the upside is that the boys will celebrate Christmas again with them sometime next month or in February once Dave is well enough to come down.  Thankfully he is recovering from his fall and hopefully he'll be better than ever once he's all healed up.

Wishing all who read this a blessed end to 2012 and that 2013 brings you much love, fun memories and vibrant health.  Thank you to all who have played a role in our family life this year -- family, friends, neighbors, doctors, nurses... everyone has blessed us in their own special way and we are grateful for the little things that people do that make a huge difference in our lives.  I hope we have helped or blessed you in the same way.... we are inspired by you all.

Wednesday, December 12, 2012

Finally Home - Post Shunt Op

There's so many thank you's that need to go to so many people after this crazy 1st half of the week.  Wynnie did WONDERFUL with his neurosurgery for the implantation of his shunt.  Dr Sacco was very pleased how it all went, and only noted that it took just a slight bit longer to thread the tubing out of his brain under the skin (down the skull, by the ear and down the neck to out his abdomen) because Wynnie's skin is abnormal.

When he said that I couldn't help but chuckle because everything about Dorian and Wynn is "extraordinary".  There's two ways of seeing that word -- things that are beyond what's considered "ordinary" and things that are considered "wow".  I like to think that the babies are a combination of "wow... I am soooo not ordinary!" (and I mean that in a good way because they are truly just such amazing little warriors!!!).   Wynnie's skin had a vast amount of adhesions which makes for a more tedious procedure but his shunt placement went perfect on Monday.

Tuesday we were hoping to leave but Wynnie was having a difficult time snapping out of the anesthetic affects, was desaturating (he couldn't keep his blood oxygen levels in the safe zone) so he was needed to breathe with an oxygen mask, and he wouldn't eat or drink anything.  Thankfully after Chris took over hospital duty Wynnie made a great turnaround with being more alert and finally eating.

After playing good cop/bad cop with on call pulmonary doctors who wanted us to keep him at least another EXTRA night at the hospital for severe sleep apnea, we finally convinced them (with the help of our pulmonologist making a call for us) to allow us to bring Wynnie home tonight.  Now he sleeps with an oxygen tube in his nose until we are able to do a sleep study on Friday night to measure what his O2 levels will need to be from here on out.

Ben and Alex were very sweet and loving to Wynnie when they saw him after basketball practice.  Ben said "Wynnie is tougher than me!  Good job Wynnie!" after seeing his horseshoe shaped incision on the top of his skull and the button sized scar on his tummy.   Dori enjoyed the exclusive attention without Wynnie but is now glad his twin is back to share the limelight.

Although Wynnie stayed at the hospital for 36 hours more than we had anticipated, we are so happy to have him back home without any major hiccups.  The staff at Children's is amazing... Wynnie received a sweet little brown Christmas teddy bear on his way out, and while we were packing up a group of volunteer Christmas carolers came by the room to cheer us up.  A group of volunteers also created a beautiful blanket that we were given at surgery recovery.  It's amazing how those "little" gestures that people do to volunteer can make such a "huge" difference for families going through stressful times.

Thanks to all of you that called, texted and prayed for Wynnie and our family.  Thanks to Ben and Alex for praying for their baby brother and being so gentle and sweet to him tonight.  And thank you to Chris "Papi" Johnson (el jefe) for being such a great partner throughout all of this.  Now on to enjoy the holidays!  :)

Friday, December 7, 2012

New Brain Surgery Update

Wynnie's new surgery date is now scheduled for Monday 12/10.  After going in yesterday afternoon to discuss the MRI results, we discovered that Wynnie's blockage in his brain wasn't in the spot Dr Sacco thought it would be.  Doing things as expected or "normal" would be too boring for Wynnie, he likes to play "stump the doctor" and he's really good.  :)

As you'll see in the picture here, Wynnie's blockage is instead down at the bottom of his cerebellum.  Before examining the MRI we thought Wynnie would get the EVT procedure (drill a hole at the bottom of his head) to help his body naturally drain out the cerebrospinal fluid.  But since the blockage is in a new spot, an EVT would be roughly 75% effective... vs inserting a Shunt would be virtually 100% effective at draining.

What's a shunt? It's a small flexible plastic tube & valve inserted into the CSF (cerebrospinal fluid) system that creates a new drain for the CSF fluid to empty out into the body.  The picture shows it pretty good.  It's a little more involved of a process but it's also a "24-hr hospital stay" procedure that could have him home by Tuesday afternoon as all goes as planned.  The vast majority of infants/children that have shunts have no problems with them and they can stay in there for life without any major maintenance.

After all of this... Chris and I know we should have gone to medical school... this stuff is all pretty fascinating.  There are no do-overs so now it's time to put major pressure on Ben and Alex to go to med school so we can live vicariously through them!  ha ha!!

Thanks everyone for staying up to date with us and sending us so many kind encouraging words, offering up prayers and just being there!  We are very blessed to have such a caring group of friends and family that have been there with us since day 1... we'll keep you posted on Monday to let you know how Wynnie does on his big day.  

Tuesday, December 4, 2012

Wynnie's Operation & Random Facts

Wow it's been a fun and busy fall.  Ben and Alex competed well through football tournament play.  Although we lost in the final round to go to the Super Bowl, they played tough and with heart.  We're so proud of them.  Chris is glad to move onto focusing on Big Red Basketball... his teams are practicing  well and it's nice to have a couple of extra nights free again now that football has come to an end.

Wynnie is getting brain surgery performed on Thursday for his hydrocephalus.  He has an obstruction in his brain that is not allowing the fluids to properly drain, thus it's putting a tremendous amount of pressure on his brain and has forced his head to grow at an abnormally fast rate (compared to the rest of his body).  After a cat scan and a sedated MRI, it was clear from his neuro surgeon Dr. Sacco that his quality of life was highly dependent on moving forward with the surgery.  Instead of doing a typical shunt procedure (where is foreign object is placed within in brain to facilitate draining), he suggested doing a ETV  (Endoscopic Third Ventriculostomy).  With ETV, they drill a tiny hole in the floor of the 3rd ventricle to allow for a new "natural" way of draining the cerebrospinal fluid.  All the pressure on his brain has slowed his development (both physical and social).  Dr Sacco said we should see a reverse of this regression within the first couple of weeks of surgery.  If left untreated, excessive pressure on the sections of the brain that control the heart, lungs and movement could prove fatal to Wynnie so we agreed with the doctor to move forward at quickly and cautiously as possible.    Although it's major brain surgery, if all goes well as expected, he could be sent home within a day after surgery.

So keep Wynnie in your prayers as his nugget goes from supersized to regular :)

Ben and Alex are excited about the upcoming holidays and have fun finding their Elf "Jacob Lester" every morning.  Due to their inattentiveness, they allowed Luna to poop inside the house while Chris and I took a quick 36 hour trip to Indianapolis for the husker's Big 10 football championship game.  When we came back I wanted Jacob Lester to leave them a note of his disappointment in their care for Luna and have a trail of chocolate chips behind his bottom.  Chris deemed it inappropriate although I thought it was the funniest thing ever so I will just have to keep that gag to myself.  

Well I'm off to a work meeting in downtown, but just wanted to update everyone on what's going on in Johnsonville.  Late breaking news... Viktoria, our nanny, got ENGAGED over the weekend!!  We are very happy for her!!  I think Ben is jealous.  Dori is beyond angry with the news... she is his girl.  :)