The ball is in his court....(My visit to John's Hopkins!)

This is how we felt after our day!

This is how we felt just before seeing the doctors on the first day!

Dr. Sack, my personal 'Dr. House'.. on the 2nd day!

On Tuesday, Uncle Mickey and I road tripped down to Baltimore, Maryland to see a top "complicated medical problems' doctor/researcher who made an appointment for me to see a specialized Gastroenterologist as well while I was down there. The plan was that they would review and discuss with me the specialized CT scan of my abdomen with a special small bowel enterography, that I had up here in New Jersey, to define whether or not I have a true Mal-absorption problem causing my complicated and rare deficiencies. When we got to Baltimore and had our first appointment with the GI (Gastroenterologist) coincidentally the man graduated high school at Livingston High school with my mother! (Class of 1965!) How 'small-world' is that!? The doctor although amazed with my complicated medical history and my review of systems that we discussed... he needed more information to make a diagnosis or speculation as to what might be my problems. When he was reviewing the specialized CT scan that I had just had done, it was brought to our attention that the radiologist (who shall remain nameless) read the scan incompletely and forgot to write about the "small bowel enterography" part.. the entire reason I had the test!! We left the GI doctor and headed upstairs to see Dr. Sack who I was to see directly afterwards and as we were walking out of the office the GI's secretary told me the secretary for Dr. Sack the "reason" we went down to John's Hopkins in the first place was on the phone. I guess Uncle Mickey got the hint to take the phone from me when I completely melted down in hallway yelling, "What do you mean the doctor left without seeing me!?!?!?!" It turns out that the secretary made a HUGE mistake and did not call to tell me that since the CT scan report was incomplete Dr. Sack did not have anything to offer me. Welllllllllllll, that just was not going to fly. Uncle Mickey (a doctor himself) took off 2 days of work, the emotional and nervous, anxiety (not to mention I am still in quit a bit of pain from my two recent major hand surgeries) and the 3 hour drive to see this man and he wasn't there!? Left? Just like that? Unacceptable!!

The next 2 hours , Uncle Mickey and I got into the car and drove from hotel to hotel, calling hotel after hotel looking for a place to stay for the night since we were told that Dr. Sack PROMISED to see me the next day (Wednesday).... we weren't very confident that was going to happen but decided to resign ourselves to believing they would not stand us up 2 days in a row. Finally, a Hyatt Regency on the Harbor had 2 rooms available and we grabbed them! (Due to a few conventions and the baseball game, most hotels had zero rooms available)

Thank goodness for Uncle Mickey.. he calmed me down, we relaxed for a few minutes in our rooms and then decided to make the best of a night...Uncle and Niece in Maryland. We went to a nice steak restaurant and I was so proud that Uncle Mickey was able to eat Fillet Mignon (for those of you who do not know.. Uncle Mickey recently had Lap Band surgery and is doing an amazing job! He also has a blog that some might find inspiring and helpful : http://michaelwasfat.blogspot.com/ if you would like to follow him!) After a relaxing dinner, we decided to walk around the Harbor. We saw hotels, boats, there was music and it was a really nice night out to just walk around, listen to the music, and have some bonding time! (Which I always love with Uncle Mickey)

The next day, we awoke and I was able to get us both a free Continental breakfast because when they know you are a "John's Hopkins Patient..." You get a Free breakfast which was nice and then we trekked over to see Dr. Sack. Nervously we awaited and after fighting some more with radiologists over the phone, we never did get the true reading of the CT scan but Dr. Sack agreed to see me anyway. Since Wednesday was not a clinic day for him, he had to rent space for the appointment in a Neurologist's office in a different area of the hospital. He spent over 2 hours with us, he has a great respect for me and could not believe how much I had been through since he last saw me. He was impressed with my comprehensive medical history when he questioned me and gave me the most thorough medical exam I have ever gotten from any medical doctor locally. Unfortunately, though, he needs more research, information, and time to determine any outcome for me. I left there feeling the same way I did 2 years ago, and although it was a good appointment and nice to talk to him and update him, I cannot get excited or hopeful until I see some movement from him. The ball is now in his court! He needs to produce answers for us... I just hope those answers come..and they are good.

After the appointment, Uncle Mickey drove the 3 hours home and again, I thank him publicly for his time, commitment to me, dedication, and advocacy. Really... without him none of this would be possible. I hope you know how valued you are in my life.. (and if you do not, go to my notes and re-read your poem..GIGGLE)

Last but NOT least...My poor 10 week old Nephew, Andrew, is having a real tough time. He has spent the last 3 weeks in the hospital due to (we are not sure what) but he's continuing to lose weight. After an NG tube, a brovaic port in his little chest and numerous tests a decision has been made to transfer him to CHOP (Children's Hospital of Philadelphia) tomorrow. After an MRA was done, there is reason to believe he may have some narrowing of his aorta and he needs an Angiogram to determine if this is true, the severity and the route to fix it. Prayers for this little guy and his family to get through. My sister Michele... unbelievably stayed all 3 weeks inpatient with Andrew and David and their 8 year old Sarah also there every step of the way. They are the strongest family I know and they will get through this.. We are all behind you guys...and LOVE you!!

To be continued...

Stacy