Solving the Puzzle

Solving the Puzzle in Boston


We had a great flight from San Francisco to Washington DC on Sunday the October. Then we got on a shuttle to the NIH to check in and get our passes for Monday. All our bags had to be checked at security and had to go through a xray scanner.

Monday 1st October: Day 1 at the NIH

On Monday we had to be at the NIH at 7.30am, we took a taxi as the shuttle wouldn’t be there till after then. That was a bad idea as the taxi driver drove us around for an hour before we made it to the security area. We ended up in the navy security area a couple times and we kept saying we had already been here. The NIH is only about 10 minutes from the hotel. In the end we had to direct him from what the navy security had tried to tell him as he didn’t seem to understand English or the directions. After we had made it through security at the NIH. He got directions to building 10 where we needed to go but he couldn’t make it there without us having to direct him.

Once we made it there we got our height, weight, blood pressure and obs done before going to meet the main doctors. We had a meeting with them and signed more paper work. Then it was off to our appointments for the day, Dad, Mum and me all had different appointments in different places and different times.
The appointments for me were a history & physical, Dysmorphology, ENT& head/neck, Dermatology, Bone Density – DEXA and Pulmonology.

Tuesday 2nd October: Day 2 at the NIH
On Tuesday we all had to all fast until we had blood tests done. There was a delay with my test being done as some of the doctors that I seen yesterday had added blood to be taken too. So the order was too much blood to be done at one time. They sorted it out and I had to have some of the blood taken the next day when they did my bone marrow biopsy. The the day went ok.
The appointments for me were starting at 7 am with Phlebotomy, Nitrous Oxide test, Ophthalmology, Anesthesia consult, Rehab / Physiatry and MRI head.

Wednesday 3rd October: Day 3 at the NIH
I went in about 8.30am for my biopsy and they took the blood then gave me a drug and that was the last thing I remember till I woke up in recovery. In Nelson when they did the biopsy they only did sedation, so I was awake for it. I didn’t need any pain killers for it other than what they gave me when they did it.
Then I had a few more appointments in the afternoon.
The appointments for me were Bone Marrow biopsy, Dental, Echo and Endocrine.

Thursday 4th October: Day 4 at the NIH
This was the main day that I had most of my scans. They did a X-ray of my hold body which was many X-rays.
The appointments for me were MRI of Liver Spleen, Ultrasound Abdominal, Genetic education & counseling, Audiology, ENT education, Doppler Ultrasound, Skeletal Survey and Psychiatry.

Friday 5th October: Day 5 at the NIH (final day)
We had a meeting with the doctor’s in the morning to finish up the week and get our results. Then we still had appointments till the afternoon. They said the rest of the results will be sent to us.The appointments for me were CT Head & Neck, wrap up session, Pulmonary function test and photography.


Here is some info about the NIH

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