Leslie's Guestbook

Leslie Prebyl  Hello, I am so glad you reached out. I would love to hear more about your son's journey.  So do I understand correctly that Dr. El-Hamamsy was your son's surgeon also?  My son Drake had his surgery in September of 2022 when he was 22.  He has done well and really hasn't had any major issues.  He developed COVID 3 days after we flew back home from New York.  I am sure he got it on the plane.  That was scary for me because of the possible endocarditis.  He felt better after a couple days.  It was in November 2022 that he started having the strange shoulder/back pain.  He had several rounds of that on into December. He went to the cardiologist and he of course did echos and ran blood tests and nothing showed up.   The pain matched the pain after the surgery. He didn't have another episode of the back/shoulder pain until around Fall in 2023.  It is so strange.  It seems to only happen in Fall and Winter. I bet that is tough for your son managing that pain and going to class. Drake's cardiologist would also like for him to stay on his BP medicine because it is cardio protective.  We are trying to arrange a zoom call to talk with Dr. El-Hamamsy about Drake's numbers from his echos.  His cardiologist said he would support Drake if he wanted to stop the BP medicine, but to keep in mind that his ascending aorta is measuring 38mm and they replace it if it reaches 50mm. He did say that it would be a slow progression to get to that number.  Drake will continue to get his echos every 6 months for the next 5 years, so he can play around with his medicine and see if things change. I would love to keep in touch with you.  I am glad your son is doing great in college.  Is he far from home?  As mom's we can't help but worry. I would say take your cues from him. If he is doing great and feeling fine, allow yourself to feel that way also.  My son is aware that he will more than likely need a re-operation in the future since he is so young, but for now he is just happy that he  doesn't have to take blood thinners and manage his diet which would have been the case with a mechanical valve. Sorry this is so long.  Please feel free to email me if you would like and we can even talk by phone. I would love to hear how you decided on the Ross Procedure for your son. My email is lprebyl@hotmail.com.  Take care--Leslie Prebyl 

Deena Z  Hi Leslie,
My husband also stayed at the Courtyard, as Timothy 
 mentioned .  You get a slight discount (10%?), if you say you are a Mt Sinai patient.  It is about a 18-20 min. walk to the hospital; safe.  I would recommend a corner room in the hotel, because it is slightly larger and you will be there awhile.  NYC hotel rooms are notoriously small to begin with.  

There are lots of take- out food places and you will have a small fridge.  You can also try VRBO or Airbnb for a bigger place and better deal that is even closer to the hospital, but just make sure there are a lot of good reviews.  (I used to live in Manhattan; on the way to the hospital grab a fresh bagel with a "smear", etc.  You will be just fine).  

Leslie Prebyl  Thank Deena for the information.  I did book the room using the discount. That was a frustrating experience in and of itself, but I got it done. I might have to ask about a corner room. I have been told that the area is safe to walk around and I am glad you confirmed that also. I have been concerned about walking by myself to and from the hospital. I am glad to hear there are take out places nearby. Even at 22 my son is such a picky eater.  I am a little concerned about finding things he will eat.  It is most definitely going to be an experience for us.

Deena Z  There are lots of food places - from healthy to grabbing a slice of pizza.  My brother brought me protein shakes, because I didn't have a great appetite the first two days and the shakes were easy to force down.  -- plus he will need to get his hemoglobin up and the protein shakes really help with that.  So do hamburgers! 

Plus, your son can order what he likes to eat, if it is not that unusual.  He would request such of the of the dietician, nurse and  there is some online way to do it.   For example, I asked for turkey sandwiches, ice cream and cereal.   Regardless, you can always bring him food.   Lastly, definitely, if you are going to be there for over a week, I would  get a corner room. Rooms are small!

Deena Z  one other thing!   Cathy Bryne on this site is having her surgery at Mt. Sinai in late July.  She found an AIRBNB only two blocks from the hospital that also has a kitchenette and is less expensive that most of the hotels.  You might want to ask Cathy how that went, particularly since it is closer to the hospital.

Leslie Prebyl  Deena thanks.  I did send Cathy a note about the airbnb. I am curious where she is staying.  When I looked a month ago I found one real close,but it was a double bed and shared bath. Not ideal for us.  I have never stayed in an airbnb and really don't know how to navigate the site if the truth is known to find a good place. The protein shake is a good idea.  My son is so picky.  He never would try foods as a child.  He has never eaten fast food. He won't eat beef or chicken.  He only learned to eat pizza in the last couple years in college because there is always free pizza around. I can't help but worry about what he is going to eat. If he can get a PB&J he is happy or macaroni and cheese:) Wish us luck.  With all the craziness at the airports, I hope our flight isn't cancelled.  Maybe the summer rush will be winding down by September 14th. 

Deena Z  Leslie, definitely forgo the shared bath, hear ya on that.  For diet, I would bring a  written list of food items that your son will not eat at all and those that he prefers.  The ICU and step-down unit dietician and nurse will accommodate.  They did so for me. There are so many special diets now-a-days!  Peanut butter and jelly has to be one of the easier ones.  If not, you can just buy the fixing's and bring it to the hospital.   The Airbnb site is easy to navigate, give yourself some credit, you can do it!  But it will be worthwhile to hear what Cath has to say.  The hotel is just fine, I was trying to get you a shorter walk to the hospital, but then the walk also is good exercise and the weather in the Fall will be lovely.