Shamrock Scurry, Race for Hunger 2012

"... let us run with perseverance the race marked out for us." - Hebrews 12:1

On March 10, 2012 our family was so happy to be part of the Shamrock Scurry at our church, Killerarn United Methodist.  It was a beautiful morning filled with fellowship, food and music.

Gavin ran his first 1 mile race and I finished with my best time yet in the 5K, 34.43 minutes.  I know, I'm still a turtle, but a happy one :)  TD, Jacob and Brie enjoyed their mile jog as well.

My mom and dad joined us as we ate a yummy (not on TD's P90X diet) breakfast and watched our community come together for a great cause.  All the benefits go to KUMC missions. 

 

Will you join us next year?

Wednesday. 

Jacob had an ok night last night. Much better than Monday night.  He got up many times throughout the night and only had one melt down over foot pain, talking his nurses into one more dose of morphine.  TD was more than exhausted today, but he was glad J had moved around so much during the night.  

Jacob's doctors both came in early this morning and took his bandages off his right side and his foot. 

After the bandages were off TD got J up and in the shower. When Gavin and I got here this morning Jacob was clean and dressed in his FSU pajamas. He still needs to brush his teeth. They are growing fur at this point. (Maybe I shouldn't write things like that now since Jacob has so many people reading my posts, naaa lol.)

Speaking  of Gavin and I coming up the hill to the hospital this morning- as a Floridian you know you're homesick when the sun hits you in the face for the first time in days and you burst out into tears. I can't explain how good it felt this morning to see and feel Mr. Sun. It was a gorgeous morning.  I love being outside and in the sun. Haven't seen it since Saturday and that was the only day last week. Anyway I knew it would be a good day. 

Jacob ate well today and took another long walk down the hall. We tried to change our flight to tomorrow with TD but we weren't able to. We are going home Friday and Jacob will spend the night we G and me at the inn tomorrow night. We made arrangements for Jacob to have a wheel chair and assistance at the airports. 

The hospital is nice but I'm glad it's our last night here. 

We had a wonderful visit from my high-school friend, Casey and her beautiful daughters. She baked goodies for Jacob that were delicious. I have meat muffins to eat for breakfast tomorrow for the first time. Ever heard of those? We all went to the car show together Friday night but it was nice to get to see them twice in a week. They moved from Tallahassee to DC last summer. 

We also had visits from Garrett and his dad who are here for the NF2 study and KC who is here for surgery with Dr. A. They are traveling from San Diego, CA.  So nice to meet them after chatting online and texting. I wish Jacob was feeling better and more social but I was able to have a nice chat and next time hopefully will be a better situation for Jacob. 

Jacob is still uncomfortable but for the most part his pain is under control. 

I'm tired and Jacob needs to go to bed. He hasn't napped all day, but Jacob and his new roommate from Lafayette, LA are having a great time chatting and watching Only In America with Mater, I mean Larry the Cable Guy. He's texting away also so I know he is feeling better. Glad J is happy :) 

I will be up at 6:30 am to wish TD safe travels and get my little G who really wants to "go home mom." I keep telling him it will be soon. 

Brie - 48 hours baby! Only 48 more hours. I can't wait to see you. I miss you so much. 

Around noon today Jacob’s nurse brought him a drug called toradol. It is an anti inflammatory drug. This was the turning point of Jacob’s day. After the infusion of toradol, a percocet (his dose was lowered) and a yummy lunch Jacob felt much better. He was still uncomfortable with tummy pain, foot pain and over all soreness from surgery, but he was some where between the doped up zombie, feeling no pain and the miserable moaner from the hours before. They had found a balance and Jacob was able to cope better with what he needed to do.  TD spent a lot of time with him today being a positive motivator!  Jacob knows I can be a push over.


As of tonight Jacob and I have had many strolls around his room and he has gotten up many times to take a few steps.  He made one trip all the way down the hall with TD. It’s a long hall. Soon he will be able to take the circulation cuffs and pump off his legs and the hot circulation socks.

Jacob has eaten lots of food and is drinking fluids well.

Since Jacob was breathing very shallow last night and his temperature has been a bit elevated since surgery he was given an Incentive Spirometer. Getting him to use it last night was a challenge, but this afternoon and today he is working very hard getting to the level his respiratory therapist has requested. An Incentive Spirometer is ”a small, handheld device that is used after surgery to help you expand your lungs and cough up any secretions from your lungs. It also helps maintain your normal breathing pattern and measures your inspiratory volume, or how well your lungs are being filled with air when you breathe in. In addition, the incentive spirometer will help you exercise your lungs, just as if you were going through your normal daily routine.”

Jacob also had blood work done to check his red blood cells to make sure he doesn’t have any internal bleeding. The appearance of his belly suggests that everything is healing right, but his pain was worrisome. His levels came back normal as they expected.

They are also watching Jacob’s blood pressure because some of the unnamed nerves where Franklin was removed may control blood pressure for that area. Does that make sense?

From what we can tell so far, Jacob doesn’t seem to have lost any sensation from the surgery.

His foot is killing him, but he can move his ankle and his toes and the tendon for his big right toe was not involved or harmed when the tumor was removed.

We had nice visits from a social worker, a Chaplin and a volunteer from the Children’s Inn.

Jacob and I watched Max Payne this afternoon and were able to chat some.

Gavin was really good today at the hospital for me.  We all ate lunch and dinner together and Gavin and I spent a long time in the playroom.  We made Jacob a BIG get well soon card.  Jacob also got mail today at the Inn, mailed from Brie and TD before TD left Tallahassee.  Jacob loved his cards.  Brie also sent Gavin a card with Cars stickers and tattoos.  G enjoyed picking a tattoo for Jacob.  J is now wearing a "Piston Cup" trophy tattoo on his neck.  May look kind of strange if you don't know Jacob has an almost three year old little brother who loves Disney Cars.

Dr. A came in again this evening and checked on Jacob.  We will see him again tomorrow.  Dr. A is hoping to be able to sit with TD and go over Jacob's scan and talk with him about Jacob's C-7 spinal tumor.  This is per my request, so I am not the only one bearing the weight of this information.  I need to know that what I think I am hearing, I am also understanding correctly.  I recorded Jacob's appointment with Dr. A this past Thursday, but having him talk to TD will be even better if received first hand. 

TD is with Jacob tonight. Gavin and I are at the Inn and I am about to get some sleep.

Thank you for your continued prayers and support. Jacob is a special boy to have so many people praying for him and cheering him on!

Jacob's recovery is starting off very slow. He was too sleepy and uncomfortable to move until around 9 pm last night. The nurse and I got him to stand and about and hour later TD got him to walk a few steps. He hasn't gotten up since and refuses to. They took him off the morphine last night and switched him to Percocets every four hours hoping to wake him up a bit. Due to his pain he has remained on the Percocet but was put back on a lower dose of morphine. The pain meds work for about two hours and then he is back at an 8 out of 10 pain level according to Jacob.
Last night was rough. This morning isn't starting off well, but hoping for a good afternoon.
All of Jacob's doctors have been in to check on him this morning. They have all told him he needs to get up and move around today. Praying for strength for J...

My lap top is dead, so here are my random notes from today...

Surgery day

Hung bag of fluids at midnight on the dot.

Did blood work and vitals at 6 am getting ready for surgery. Brought warm blankets in to bring Jacob's temp up.

Cleaned his face and eyes. He Checked his Facebook, caring bridge and texts one last time before pre op.

Took him to pre-op at 8:20

Jac was very calm in pre op. Was so happy he got to talk to Brie.

Dr Kebebew came and saw Jac in pre op. one of the neuro drs came by as well. I can't spell his name.

Took him to OR at 8:40. He was almost asleep from the "relaxing" meds the anesthesiologist gave him.

The surgical nurse, Richard Called at 9:22 and said surgery has started, is underway, laparscopic, made 15 mm incision and moving organs out if the way to see what needs to be done. Will call me every hour. Dr A and Dr K are both there. Dr A did positioning b/f surgery. 

10:30 Richard called and said they are still in laparoscopic. May be able to not open!!

Dr K came and talked to TD and me after surgery. Was able to remove tumor laparoscopically! As far as they know there were no important nerves involved in the removal. The nerves in that area are no named nerves. None of Jacob's organs were affected.
Dr A being in the surgery was the difference.

Dr A came out after the foot tumor was removed. Said they both appear to be schwannomas. Jacob's foot is going to be very sore.

Both drs said Jacob did great.

Jacob was brought down to his room at 2:30. He is highly medicated. He was very sick from anesthesia. They took him off fluids and took the huge IVs out that anesthesia put in.

He is very sleepy and for the most part been sleeping. I have been able to give him water and adjusted his foot. It has to be kept elevated. He's complained of pain and they are giving him morphine every hour.

Dr Kebebew came and checked on Jacob. Jac told him his back and foot hurt. Jacob told me his whole body hurts. Dr K said he back will be sore from the way he was laying.

Jacob is supposed to get up to us the restroom when he's ready. They are bringing in a walker and a machine to circulate the blood in his legs.

I will tell Jacob of the out pour of prayers and love he has received today when he is able to understand me. All I'm getting right now are moans and requests for water Surgery day

Jacob and I arrived at NIH Building 10 Clinical Center this afternoon at 3:00. After paperwork in Admissions we were taken to Jacob's room in the Inpatient NW Day Hospital.  Jacob was put in a semi private room without a roommate.  Our nurses have been very nice, but it was upsetting that even though Jacob was on the surgery schedule there weren't any orders in for him and they weren't sure who the "primary" team is for J's surgery tomorrow. I won't go into details about that because it was a three hour ordeal. Getting J's port accessed was unpleasant for Jacob but I can save that for another time also.  The theme for this afternoon could have been, according to the nurses, " this has never happened.". Typical for us it seems. 
Dr. Asthagiri came and saw Jacob. He wasn't the doctor on call for neuro, but he still came to see how Jacob was doing.  We saw a doctor from endocrinology and another doctor from neuro surgery.  They both wrote on Jacob's surgery spots with a permanent ink pen. He's sporting their initials on his right foot and right side. 
Jacob can order any food from 6:30 am to 6:30 pm and tonight he took advantage of the room service. He ordered a pepperoni panini, chicken fingers, Mac and Cheese, yogurt, apples, oranges, grapes, chocolate ice cream, a Pepsi, and a Gatorade.  He said it was all yummy. He also ate brownies and cookies from the Children's Inn dinner. 
Gavin and TD came over and spent some time here with Jacob. There is a nice family room and play room.

Jacob had a chest x ray to make sure his lungs are clear for surgery. They are. 
Jacob also had an EKG to make sure his heart is healthy for surgery. It is. 

They will be coming in at midnight to start Jacob's fluids.

Jacob is watching his 5th episode of Gator Boys and seems calm and cool. He looks adorable in his snowflake hospital gown and FSU pajama pants. 

I have loved listening to Jacob's phone blowing up with text messages and Facebook notifications of encouragement. 

Thank you all for your prayers, for your time and support. 

Jacob is the first case at 8:00 am and will go to pre op around 6:45 am. I will update everyone as soon as I know how Jacob is doing. 

I laid awake most of the night worrying about so many things. I don't


how I'm going to take the boys into the city today, but I am. Life goes

on.



I wanted to take a moment to reflect on the good things that happened

yesterday.



We got to spend another 15 minutes with Ali and Laura after Ali's

infusion and before they went home. They made it home safely. As did

Savannah and her mom.



We met another patient of Dr. Asthagiri's, Vaughn, all the way from

Oregon. Vaughn and I have talked before on Facebook. I thought we had

missed him. I'm glad we didn't. He was laid back, positive and so

happy to meet Jacob. We talked with him and his friend and hope to have

more time with them next time. Vaughn, please send me a copy of the

picture you took with Jacob. Vaughn is so tall, he makes Jacob look

short :) Jacob thought he was "really cool."



I had a moment with our research nurse that was nice. TD called while I

was signing papers. As his picture came up she asked to see it. We went

to talking about how much Gavin looks like him and I showed her pictures

of Brie. It's the little things.



Although Dr. Asthagiri brought us bad news, he also is giving us hope. I

adore this doctor. To watch him with Jacob and to see how comfortable

Jacob is with him means so much. They cracked jokes and laughed

yesterday. Jacob paid attention and asked questions. I can tell that Dr

A really cares about Jacob. Jacob hugged him when we left. Not to

mention, like Dr Smith (Jacob's other doctor I adore), Dr A kindly puts

up with me. Not an easy task.



Did I mention how great Gavin was for the four hours we were in clinic?

Not one difficult moment.



Dr. Kebebew's news was upsetting as well. I know, without a doubt, that

bringing Jacob to him for this surgery was the best choice we could've

made. Jacob is getting the very best doctor in his field. The best of

the best.

Jacob's pre op was stressful, but I can smile about Dr. K giving Gavin

daps and knowing about the secret explosion at the end. I can tell you I

feel safe giving my child over to this doctor to remove this nasty

tumor. Dr. K's surgical fellow is from Talkahassee, accent and all. She

is a typical beautiful Florida girl who I know without a doubt took

special interest in Jacob. Jacob made me laugh... he named his adrenal

gland tumor Franklin. He was cracking jokes that Franklin's cousin has

moved in. His name is Fred and their last names are also Grimes. Jacob

got excited about having a morphine button. Who wouldn't be! Jacob sat

and talked with this fellow from Talkahassee about hunting and high

school sport coaches and all the things he loves about home (I can't

wait to get home. I'm missing you this morning, TD. I need you to hold

me).



Our walk to the CVS wasn't fun. The weather was yucky, Jacob's left leg

hurt, we kept having to cross the six lane road because the sidewalks

are under construction. But Jacob and I got to talk. He told me all

about Savannah, who I really didn't get to spend much time with and have

never met before. We walked by the Double Tree hotel that during our

first visit here we went to a fancy dinner there with the families at

the Inn. Jacob didn't like the food so he had chicken fingers and Gavin

ate baby food. He was only 7 months. It feels like yesterday. It was one

of our first times witnessing the kindness of the people here at NIH.


We met a family from Jacksonville, Florida. A country family who heard

Jacob talking about getting his first deer. Dressed in a camo shirt,

which, Jacob will tell you, you just don't see up here, the dad told us

about the deer, doe and buck, living behind the inn. Him and his son

have been feeding them apples. I hope Jacob gets to see them.


I enjoyed watching Jacob play pool yesterday evening. Gavin and I tried

to play video games but after 3 trips to the office, it didn't work out.

It's fun for him to just run the halls.


I sat last night and read emails and Facebook messages from my online

family and our family at home. We may be traveling through rough waters,

and what Jacob has ahead us terrifying to me, but I know I'm not alone.


That is something to feel good about.

As I'm typing this I can hear the thunder crashing outside. The boys are

snoring away and I ignored a call from NIH that anesthesia wants to see

Jacob today at 2:00 pm.

Guess our plans will be once again changing.