Past 3 days...
April 8, 2013 Monday night:
Good evening family and friends. I just wanted to check in with everyone and
let you know Jacob is good to go for surgery tomorrow. Today Jacob had pre-op with neuro-surgery,
labs, prescriptions, and pre-anesthesia.
Other than the lab refusing to use Jacob’s port to draw blood, today was
long, but uneventful. We were so happy
he did not have to be admitted for traction and we have been able to have a
free evening in Gainesville. Jacob and I
enjoyed a nice dinner at Chilli’s and dessert at Cold Stone Creamery. I went for a short run and Jacob has spent
the evening watching the second Tooth Fairy movie with Larry the Cable Guy and
Anger Management. When did he get old
enough for the latter? Anyway, he’s all scrubbed up with his antibacterial pre
surgical wash and as ready as he can be for tomorrow. We are to report to the hospital at 6:00 am
and Jacob’s surgery is scheduled for 8:00.
We were told by our nurse practitioner that surgery should be done a
little after lunch. We also asked if the
hardware would be extended or replaced with larger rods. Dr. Pincus said he won’t know until he opens
Jacob up for the procedure. We also
asked if Jacob could expect to lose another rib and they said they “don’t think
so.” Lastly they informed me of the
risks, and of the greater risks of this fusion being higher up and to the base
of the skull. I was informed that they
may even need to make an incision in the front of Jacob’s neck (throat area)
and go behind his esophagus and place a plate so both sides of the spine are
supported. I reassured them that we want
them to do whatever they think is necessary so Jacob doesn’t have to go through
this again anytime soon.
That is all.
I am sleepy, snotty, sneezing like crazy, missing our other family parts
and worried to pieces about tomorrow.
Jacob is calm and cracking up at whatever he is watching now on his
Thank you all for your prayers, love and
support. I will write an update as soon
as I can tomorrow!
Apr 9, 2013 8:44 AM
Tuesday April 9, 2013 8:00 am
Jacob checked in at 6:00 am and they immediately took us up to pre op holding. Jacob got his port accessed and vitals taken...and his favorite part of all, undressed for the dreaded gown. We talked to several doctors, none of which that we have met before. Jacob was in good spirits. We laughed and joked and he played music for me. Jacob did get upset when the Neuro surgeon went over how high up Jacob's new incision will be, or so he said it will be all the way up to the middle of the back of Jacob's skull. This was the first we heard of this so we'll see how Jacob looks in recovery. We didn't see Dr. Pincus, the operating surgeon, yesterday or this morning.
I'm waiting on TD to get here and Jacob's dad and family will be here sometime today as well. So Jacob will have a lot of loved ones to wake up to.
Now we wait.
Wednesday April 10, 2013
Last night was a bit rough and, considering how well Jacob was doing after Recovery (which has become a nightmare thanks to the x-ray crew… Thank goodness he doesn't remember it…), a bit unexpected as well.
Last night Jacob was plagued with a pretty horrible case of the shakes and nausea. After throwing up everywhere and fighting hard to get his pain under control without making him sick, we settled in around 1:30am only to have a new patient admitted to our room. You may recall that during the first fusion recovery, Jacob’s roommate was a motorcross child (maybe 8?) that broke his collar bone and cried the entire time for his grandparents that were nowhere to be found. Well, we lucked out a little more (if that’s what you can call the situation… “luck”) this time that it was a 17 year old boy who had been in a SUV accident. He was in a collar and under watch due to the fact that the vehicle flipped. This kid walked away with just scratches. I'd say he's got an angel. And aside from us being woken up during the shuffling in, he's been quiet all night, hasn't complained and is very polite. His family hasn't been here since they brought him in. I always find this odd, but I guess all of us are just doing the best we can.
Fast forward to 6:00am, one of Jacobs surgeons came in (we'll call him Dr Far because I can't remember, or pronounce, his full name). He talked to Jacob and looked at his incision. Jacob's was thrilled to know that his incision only extends slightly above his hairline and this time they chose to use glue instead of staples or stitches. They even cut out the old scar and pulled the unaffected skin together in hopes it will look nicer when it heals. A little ray of sunshine! Since J had such a hard time stomaching the dilaudid, they took him off the pump and switched him to oral pain medications. They also started his tordol!! Jacob ate a little breakfast and got up for the first time and took some steps. Dr Pincus and Leigh Ann, our nurse, came in and saw Jacob. They reviewed Jacobs neuro exams and said he could go home whenever he was ready.
Since I started this post earlier this morning, Jacob has eaten well, taken a shower and done PT. He's really doing great. His pain is being controlled well and he had a nice visit with his dad and step mom. Jacob even said he’s ready to go home. I talked him into staying tonight. One more night.
Thank you all for your support. I know he has a long recovery but the healing has begun! Thank you God!!
Monday, April 8, 2013
We Run for Jacob (aka “But I had no idea!)
P.S. Jacob loves his shirt and thought that it was "really cool" that so many people are rallying for him and for our beloved NF2 community. The two words are more than we get for most things from Jacob!
Most of you are aware of our wonderful group, Moms Run This Town, so I’ll try to keep my probably-way-over-the-top adoration for this truly outstanding community of women to a minimum (or not…). I love being the Tallahassee chapter leader, and as our group continued (and continues!) to blossom, becoming much more active not only locally, but statewide and nationally as well, I realized that it was in the best interest of everyone to recruit help to keep up with, well, everything. I recently reached out to my running partner in crime, Tammy, to help me co-lead the chapter, and I must say, I did a dang good job picking the best candidate! Tammy is the perfect mama for the job, sharing our love for running and bringing a very active approach to leadership! Little did I know her first project would be for me, for my son and for the cause nearest and dearest to my heart.
I was excited to run in the 38th Springtime Tallahassee 1 mile/5K/10K, a popular local race with a challenging and hilly course, this past Saturday. The fact that it was local was a plus, but I had no idea exactly how special this race was going to be.
Gavin had a tee ball game at 9am on Saturday, so I tried really hard to get out of carpooling to the race on Saturday morning. I wanted to run the race and rush to the ball field (since I haven’t yet figured out how to teleport or clone myself…). Tammy insisted I ride with her, but wouldn't tell me why. Trusting her completely, I figured she was doing something nice for me (because that's the amazing person she is!), but I had no idea!
On Friday night, our group's Facebook board was filled with "Flat Mama" photos, a tradition of posting our outfits and gear for the next day. I loved the fact that so many members were racing Saturday and loved all the cute outfits even more! When Tammy showed up Saturday morning, she (oddly) asked to come in with her hubby, Harley, in tow with his fancy camera. She was bundled up in her running jacket and not in her posted flat mama! Tammy had a hand full of shirts and a bag of ribbon. Under her running jacket was an awesome “We Run for Jacob” shirt with the inspiring words, “Love, Strength, and Wisdom” surrounding a blue and green ribbon with the signature MRTT runner girl (my absolute favorite little decal!) in the middle. As I write this, remembering this moment, my eyes are filled with tears of joy! And guess what? I STILL had no idea!
Tammy had a shirt for me and for everyone in our family. After happy tears, pictures and some shirt surgery, including but not limited to cutting sleeves and adding ribbon, we were on our way to run the 10K. I spent the next 15 minutes in wonder, contemplating how special it was to have someone so kind in my life (you know, other than my wonderful immediate family), to make shirts for me, for herself and for my family. We made the hike up the hill to Monroe Street and, eventually, to the Courthouse lawn. We scheduled a MRTT photo meet-up prior to the race, and I was proud as punch to wear my “We Run for Jacob” shirt!
When we arrived at the rendezvous location, all of our members running the Springtime donned “We run for Jacob” shirts! ALL OF THEM. My heart pounded. My head spun. My eyes… yeah, yeah, you all know where this is going. Surprise! I was completely stunned and overwhelmingly amazed with such a HUGE show of support! After many loving hugs and heartfelt thank-you’s, Tammy informed me that, thanks to a series of people, thoughts and events, she was able to raise $1,000 to be donated to the Children's Tumor Foundation, the leading provider of Neurofibromatosis research and support for families living with NF1, NF2 and Schwannomatosis. One thousand dollars! How awesome is that!?! These acts, acts of love and support from my best friend and from those that have never met me or my son, went so far above and beyond!
Thank you, Tammy, for initiating and mobilizing such a wonderful series of actions to make a difference for my son and for so many others I care about! You are truly one of a kind! Thank you, Laura, for encouraging, and, Jacy, for designing, an awesome shirt! Thank you, Stirling, for making the design come to fruition. And thank you to everyone who participated and donated! It’s cliché, but words seem so hollow when you experience the goodness of kind hearts in this magnitude. My world is full of love and support, and no words can express my deepest gratitude. I’m filled with a great peace that I am surrounded by so many caring people. So far beyond thankful. I praise God for each and every one of you!
I discovered something different this race. The Springtime Tallahassee was my best 10K to date. I had a fantastic run! Not because I didn't suffer any side cramps, because I did. Not because of my time, because it wasn't even close to a personal record. But because of the runners who ran with me, and who ran for Jacob, my son and my hero.
As I sit here at the hospital, anticipating Jacob's fourth major surgery in 14 months, I have the beautiful memory of Saturday morning, my love of running and many amazing people who are fighting this battle with me.
My shirt is washed, packed and ready to be worn tomorrow during Jacob's surgery.
Thank you all for running for a cause!!!