Back to Chicago

Well we are back from our road trip! I don't know that I would ever drive again if given the choice! Although I guess I can't complain because Ashleigh did really well. We left last Monday (May 2nd) with a sick child. She had a 102.8 fever on Sunday and a horrible sounding cough. She woke up a little better Monday morning. I couldn't get her into see a doctor until 2:30 so since she seemed better (and her temp was down to 99.7) we decided to leave. We skipped going to the zoo and just headed to Georgia. We spent the night in Macon and drove to Atlanta in the morning. We went to the Georgia Aquarium which was cool. Ashleigh had fun - she loves fish! She was doing better too - fever was being controlled with tylenol and motrin and she was acting totally normal. After having lunch at the Hard Rock we headed to Bowling Green, KY where we spent the night. The next day was a long hike to Chicago. We stopped to walk around a little and have lunch but then just kept going. We finally got to our hotel around 5:30. We hung out for the night because we had to be up bright and early the next day for the cath.

I was supposed to be at the hospital at 7:30. We were a little late because traffic was horrendous and we had to stop for gas, otherwise we would have been stranded on the side of the road calling AAA!! No one seemed to mind we were late - I knew we'd be sitting around for a while anyway! I think they brought me into the cath lab a little after 9:00 which really wasn't bad - I figured I'd be waiting longer than that! Dr Rich did the cath through my neck instead of my groin. It really wasn't a big deal - the area was numbed up so all I felt was a little tugging (plus I was doped up with some valium!!) Overall the results were good. My mean pressure was 39. I can't remember what the systolic was or if he said how my heart size looked. The bad part was I really didn't react to the calcium channel blockers. First he gave me 50 of adenosine and I dropped to about 36 then he went up to 100 and I didn't feel so good with that - I got hot and my heart was racing! It was a little nerve racking but he said it was a normal reaction to the medication and he turned down the dose. Within a minute or two I felt fine. After the procedure was done he came and talked to us. He said that the echo and the EKG looked better from the previous ones I've had done and my pressures are much better. He said I am definitely not a candidate for IV meds at this time. He said it's good that my systemic BP is low - it was 85/54 when I was lying on the table. He also said that although I am not a CCB responder my prognosis looks good. He wants me to go back on the Revatio - he likes it better and the dose can be increased if needed where as Adcirca can not be increased. He doesn't want to add anything else right now. I will call him in about a month and let him know how I feel. He wants me to go back to redo the stress test - he wasn't impressed with my 11 minutes. I don't think I will go back just for the stress test - it costs way too much money to go up there. We will have to see how I am feeling and find out if one of the docs here will do the test.

I am disappointed that I didn't react to the CCB's. I feel like we wasted ALOT of time and money. If Dr Mubarak at Shands had just done the cath and the CCB challenge and not the whole put me in ICU thing we would have saved alot. I guess I can't change what's already done. I am very glad to hear that things look good and I do feel good. But now the question is which doctor do I follow??? They all seem to have different ideas on what is the best treatment. Dr Burger at Mayo likes Adcirca (and would push me to go into his clinical trial where he is trying to figure out if more than one PH drug is really beneficial), Dr Mubarak thinks PH patients should definitely be on two types of meds and Dr Rich thinks PH patients shouldn't be on two meds. He says there is research showing that Bosentan with Revatio actually makes things worse (I have not heard this one before - I need to look more into that) plus he likes Revatio and not Adcirca. So who the heck knows?!? I do know that although it was a pain to take the Revatio three times a day I felt better on that. Since being on the Adcirca I have had chest pain on and off (nothing serious but I just notice some discomfort sometimes that I never felt with the Revatio). I think I will go back to the Revatio and see how I am feeling in a month and go from there. Luckily I have an awesome cardiologist who I love and can just ask to do an echo :) Since no one seems to think the echo is any good for the pressures at least we can see the size and function of my heart. We got to leave the hospital right after he talked to us - that was a great part of having it done through the neck - no bed rest!

So that night Ashleigh started complaining her ear hurt and she was really fussy. We called our pediatician and got some antibiotics and ear drops. The next day was our only full day of vacation (no driving a million miles and no doctor appointments). Luckily Ash woke up feeling ok (not 100% but better). We went to the Field Museum and the Children's Museum at the Navy Pier. It was a fun day :) Saturday morning it was time to get back in the car and head to KY. We got there pretty early in the afternoon so we decided to go do a few things. We stayed in Horse Cave (a very small town about a half hour north of Bowling Green). We went to a wax museuem and got some homemade fudge (yummy!!) Then we took Ashleigh mini golfing for the first time - that was interesting!! She had fun! It was really pretty there and the weather was beautiful. The next day we took her to Dinosaur World (I didn't really want to go but she was excited - it turned out to be pretty cool!) Then we headed towards Georgia. We stopped and had lunch/dinner at Olive Garden which was crazy busy for Mother's Day. Totally worth the wait though - I love that place! We stayed over in Macon again then drove the rest of the way home today. So glad to be back! Ash is doing much better - the cough is just about gone and she has not once complained about her ears. Just in time to go back to germy daycare tomorrow!