July 2012 NIH Trip Day 1 & 2

Day 1, Travel Day


Busy Day 1… done!

With the help of TD and Mr. Dana, everything that needed to happen, well, happened. TD took Jacob to Kids Corner at TMH for his　blood work this morning at 7:30 am while I took Brie to Leon High school to see about her summer classes.　 Jacob's blood work was for Dr. Amy Smith to make sure his system is still reacting well to the Afinitor.　 Brie's Hope PE class is a　three week summer class that will take the place of a full year course.　 This way she wont have to sweat during regular school… Really?!

Gavin tried to sleep in this morning.　 It was hard to wake　him up　and say goodbye for almost four days, especially when he doesn't understand why he can't come with us this time.　 He’s super excited that Pop Dana is here to play with him though!

Papa Ken and Nana picked Jacob and me up around 8:30 and took us to the airport.　　They stayed and kept Jacob and I company until a security guard noticed an unattended　duffel bag that had been left outside the restroom where we were sitting.　　Another 15 minutes or so passed and the bag remained unattended.　 We　cumulatively decided it was best for us to remove ourselves from the area.　　TSA had been called and the bag was going to be taken care of soon.　What idiot leaves their bag alone in the middle of the airport floor for 30 minutes and doesn't come back to get it?　 With that said, security was a breeze today, or as G would say, "Easy peesy."　We still had to take our shoes off and unload all of stuff for the scanners, but I didn't get felt up by TSA this morning.　Yay! Tallahassee now has one of the new x-ray machines like many of the larger airports.　 My bracelets were the only think that showed up on it, but I didn't have to take them off, so no sweat! Our flight was scheduled to leave at 11:01 am.　 What's up with the one minute?　 Stupid.　 Anyway, our flights were very full, but uneventful.　 There were a few scary moments thanks to thick, beautiful clouds, but the skies were gorgeous.　　We listened to a few very unhappy toddlers which I attributed to karma.　 Believe it or not, it made me miss G more.　 We arrived at DCA on time, at 2:30 pm, and easily made our shuttle at 3:40.　 It wasn't that hot here today.　 Jacob and I went outside for a bit this afternoon for J to play basketball.　 Our groceries came late, around 7:20 pm,　and they didn't bring Jacob's soda, but considering it is the worst thing we have to complain about today, I feel lucky.　 We are in an odd room at the Children's Inn, but I'm over that too and won't waste my time complaining. I’m just thankful to be here, safe.　

Heading to bed. Tomorrow will be a long day. Peace!

Day 2, Blood work, CT scan, Endo Clinic, MRIs

The Not-So-Awesome Awesome NIH Day

I just signed up for my first RunDisney! I’m SO excited to be doing the Disney Princess Half Marathon 2013! Yes, it is a little over six months away, but I am thrilled.　 And yes, I will be sporting a tutu and princess tiara at 38 years old!!　 Thank you, Mrs. Gina, for my early Christmas present!　

So today was an awesome day.　 As I sit and reflect I can definitely say today was an awesome day, even though it didn't start off well, and the fact that Jacob is in bed sick right now makes me sad, but, overall, today has left me happy.

We started at 6:00 am this morning with the Afinitor wake up call.　 We were in the Pediatric Oncology clinic by 7:20 for labs that were ordered for Wednesday, but I had talked them into doing them Tuesday morning so Jacob could have them done while he had his port accessed.　　I　put numbing cream on Jacob's port and his left inner elbow for the IV and port access.　 So, getting his port access placed and getting his IV put in was easy.　 Jacob decided to have both done so he wouldn't have to wear an IV in his arm all afternoon.　 His port can't handle CT contrast and that's what was scheduled first thing at 8:00 am.　

The first problem we ran into was that the NIH computer wouldn't read Jacob's ID, so his information couldn't be printed and all the tubes of blood taken couldn't be labeled.　 Jacob's nurse asked if we needed labs for Jacob's CT.　 I assumed they weren't needed since Jacob wasn't even due to have blood drawn until tomorrow.　 We went on to CT reception　thinking he was good to go and Peds would figure out the computer issue.　 After two hours in CT, we realized　Jacob wasn't good to go, and after several conversations with different staff,　Jacob was　sent back to　Peds clinic for more blood work.　 I was very concerned about being late to Jacob's 9 am appt with OP3 regarding his CT scan results.　 I was informed that they would be there all day and there was no hurry.　 Um, Jacob didn't have all day.　 He still needed a scan, have his clinic, eat and get to MRI by 1:30 for his non-flexible,　three-hour imaging.　　

Jacob was finally done with CT and we were up in OP3 at 11:30.　 CT wouldn't take out Jacob's IV,　so after a long discussion with Jacob, it was decided that I would take it out.　 Needed an easy button for that, thank goodness.

Ok, ready for the first reason today was awesome?　 Jacob's CT scan of his adrenal area is　ALL CLEAR! Thank you, God!　 Dr. Patel said the only thing on the scan that even suggests that Jacob had surgery is the evidence of clippings from the surgeons that were in there.　 They asked Jacob about how he was feeling, eating, etc.　 The doctor talked to us about a few other peri-spinal tumors that showed up on the CT that were higher up, looked at his surgery scars and, an hour later, we were on our way.　　

Second reason today was awesome?　 My online friend, Susan, and her beautiful infant daughter, Ella,　drove all the way from Philadelphia to have lunch with us and sit with me during Jacob's long brain and spine MRI!　 She arrived at 12:30.　 Perfect timing.　　When you're online or texting with someone, you can　take time to think about what you want to write and　hide your emotions.　　I'm honest in my blogs and in my texts, online posts, etc., but meeting someone in person who you think very highly of can be very intimidating.　 As soon as　Susan hugged me all my worries faded.　 I felt comfortable, like we were old friends.　　She is truly beautiful, smart and funny.　 What's the girl equivalent of a bromance?　 [My husband suggested a homance… such a punk.] I know that's what it sounds like, and that's ok. 　I am so moved that Susan would take the time to drive three hours just to sit with me in hopes to be a positive distraction during a　hard afternoon.　 Well, it worked!　 We enjoyed a chatty lunch. Even Jacob joined in and seemed extremely comfortable as well, meaning he had no filter! lol.　　After taking Jacob to MRI, we spent the afternoon just talking and playing with Ella.　 I have forgotten how little, and how precious, a two month old is!　 Ella was a perfect little angel.　 I can't wait to see them again!　

Jacob came out of MRI at 4:40 in great spirits.　He said he slept the first two hours from the brain scan and for the last hour for his spine, the tech was cutting　up and being funny.　 We rushed back to Peds to have his port access removed, flushed and get heparin.　 Then we rushed to medical records to request Jacob's images be placed on a disc for me to pick up tomorrow.

[A lot of rushing, I know.] We were all done at the Clinical Center at 5:15.

Back at the Children's Inn, we were thrilled to see Rebecca and Savannah had arrived from Chicago.　 They were the reason we asked to come to NIH this week.　 Jacob and Savannah played games and hung out.　 I enjoyed talking with Rebecca on the back deck until it started to pour rain, [like it would pour anything else?] and look forward to seeing them again tomorrow.　 I piddled in the art room and did a few miles on the treadmill and bike in the exercise room.　 Jacob is already in bed, though, with a very upset stomach.　 I'm guessing it is from all the dye/contrast, not drinking enough water (I've been pushing it, though) and too much pizza, frozen coffee　and fast food the past few days.　

I'd like to add also that we met another NIH patient, Jodi, today who is part of the NF2 study.　 We didn't get to talk to her long since we were running back to CT, but I was so happy to meet her and we hope to see her again.　 I really need to learn sign language.　 She was so happy and patient with me - she did a great job of reading my lips, but I would like to be able to communicate easier.　　Vaughn, I hope you have your dry ease board with you tomorrow!!　 Looking forward to seeing him too :)

In the morning, my　life-long friend Casey, who lives in DC now, is going to visit us.　 So I’m hoping no matter the news Dr. A gives us it will still be another great day, another day full of amazing people.　

Whoa, as I was trying to proof this, Jacob just sat up in bed and puked everywhere.　 Bed, carpet, wall, himself.　 Was so much fun to clean up.　 Yuck.　 Yuck Yuck.　 Feel like I need another shower now, but I'm too tired.　 Yuck.　

Real quick Wednesday morning update - Jacob threw up all night. He has had some soup and fluids this morning and gone back to bed. Thank goodness our clinic isn't until 1:30. He said he's tired and his stomach still hurts but he feels a little better.

Hoops

Was able to sit outside in 84 degree weather....

Susan, Ella and me :)

Did a little bunny watching yesterday



Jacob's favorite way to travel, asleep