Wednesday, August 17, 2011

NIH Trip Aug 16-18, 2011 (I)

Wednesday, August 17, 2011 (Tammy’s version)

Jacob and I had extremely uneventful flights from Tallahassee to Ronald Reagan airport yesterday. No hassles with security and no wait times. We were at the Children's Inn in Bethesda, MD by 11:30 am. I guess this is the one advantage to starting your day at 4:00 am! Upon arrival, I was informed that the Inn was full and our room wasn't ready, so we went over to the Clinical Center to see if Jacob could be seen by oncology early. To my surprise, Jacob's oncologist here at NIH, Dr. Kathy Warren, was on vacation, but the RN (I can't remember her name, but she is awesome!) called the oncologist who is filling in for her, a fellow, Dr. Cooper, and she came right over to see Jacob. I gave her all of my copies of Jacob's Avastin mapping, MRI reports and labs. She did an intake and examined Jacob.

We were done with Jacob's appointment, had a crappy lunch in the cafeteria and were back at the Inn by 1:30 pm! I believe this should be included in the record books, and I will have to remember this the next time we spend 6 hours in the waiting room! I was dying for a nap, but our room still wasn't ready. Jacob played Xbox and I watched the news. Sitting across from the playroom broke my heart and made me miss Gavin even more than I already did. I did eventually get my nap in, which was nice! Later that evening, the Inn had volunteers come in and provide a really fantastic dinner. One of the chefs was supposedly from the Food Network. Normally, I don’t get excited over food like Jacob, but I was thrilled about dinner because we didn't get to go to the grocery store until 6:30 and I was starving!

After shopping, I had the pleasure of meeting and mom and her son from the Detroit, MI area, both of whom have NF2. We had a very nice conversation. Her son is very different than Jacob. And by different I mean complete opposites of the spectrum. He plays the clarinet, the violin, does theater and sings opera. Needless to say, he and Jacob didn't have much to talk about (an understatement, obviously, could you imagine Jacob trying to talk about theater?!), but it was nice for them to have met nonetheless. Jacob was mad at me at 11:45 when I enforced the first lights-out-before-midnight of the summer, but he survived and we started day two at 7:00 am this morning. Jacob went to the Peds clinic, back to the wonderful RN, and had his port accessed and labs drawn. They took at least 8 viles, but she showed Jacob how much (in CCs) it was and it was less than an ounce. We went to MRI to see if they could see Jacob early, but that was a no go. We tried to go to the Floor Five Clinic and see the new Endocrinologist doctor, but I guess he has been specifically asked by Dr. Asthagiri to come see Jacob this afternoon (a special trip he does not normally make) and won't be in until our appointment time at 1:30. Jacob is having his MRI now and we will have his port flushed and de-accessed, inhale some food and go to clinic. I will update later about that appointment.

[UPDATE: This appointment has been moved to 9:00am on Thursday so as not to interfere with the Washington Nationals game tonight!]

Thomas said he is working on a blog post as well, so who knows what the end result will be - LOL.

TD - I miss you guys so much. It seems so silly with it only being a day and a half, but my heart really hurts. Jacob and I watched our videos this morning with G the other day. So sweet. I love you. I still want to talk to B when she has time :)

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