So Many More Tests . . .

We hit the ground running this Monday morning on the 7am shuttle to National Jewish. The hotel manager, James, was our shuttle driver this morning.

The first shuttle was full so my mom took the second shuttle and met me at the hospital. I went up to the pulmonology department for a "respitory care sputum induction" . . . I'll leave the details to your imagination but there was a stuffed animal from the Mucinex brand holding a sign that said, "I Love Mucus!!" I guess it takes all kinds. I was just fine on my own - until I left my paperwork in the waiting room . . . dropped my coat in the hallway . . . and had to manage my purse in the appointment room - where's my mommy?!

For the second appointment of the day, we were sent on a goose chase to find an office in the pediatrics department of all places . . . wait - wasn't I just crying for my mommy?! . . . It was with a pharmacokinetics specialist. That is a huge word for someone who studies what medicine does to your body and how your system reacts to it. The doctor here has planned an all day study to test my body's absorption of prednisone and steroids in all it's forms. She read a list of side effects possible with long term steroid use and I had all of them . . . think it's a good idea we're having this test. The official day of drawing blood is on Wednesday - today was just the day to talk about the process and gather information about my history.

We then hit a roadblock . . . in the Amazing Race, this is a crazy task that only one person on the team can participate in . . . guess who got picked?! It was me!! Yipee!! The task was a esophogram barium swallow. I had to fast last night and this morning in preparation for this once-in-a-lifetime experience. Wearing one of the beautiful gowns they have to offer here, I went into a little room and stood on a tiny platform. Over the course of the next ten minutes, I was laid down, sat up, moved my arms up, then moved them down, and in between all of this shuffling and moving, I was instructed in drinking a variety of thicknesses of chalk . . . gulp it, chug it, swallow once, swallow three times in a row, hold it in your mouth, swallow it down, drink some more, lay down, drink lots, gulp more . . . you get the drill - it was horrible . . . glad it's over . . . at least for now.

At 10:30am I went to a mandatory psych consult appointment . . . I tried to send my mom - she's seeing Willy Wonka every where we go since our trip to the chocolate factory - I'm starting to get worried about her . . .

Back to the day . . . I was finally able to eat and I was starving! We checked our appointment schedule and realized we don't have anything else until 4pm . . . so we waited . . . and waited. . . and waited . . . and waited . . . we played some card games . . . and waited . . . did some puzzle books . . .

 
And waited . . . and waited . . . and waited . . . and waited . . . and finally, it was my turn . . .

And yes - it is another barium swallow test . . . I'm loving me some barium!! (on the board it's called a fluoroscopy . . . a fancy word for swallowing crummy chalk stuff) . . . and if anyone is keeping track at home, I've had four of the seven tests offered on the biomedical imaging menu . . .

This test was not as bad as the first one but still not super fun - the purpose of this one was to see how I swallow . . . something I'm sure you've always wondered about . . . an x-ray board was brought over to my face - I mean really close to my face . . . then I was instructed on swallowing a variety of thicknesses of barium . . . watery, thick, pudding consistency, then a cracker spread with barium . . . would you like some barium to go with your barium?

I finished the test and we caught the shuttle back to our cozy hotel . . . I'll leave you with some photos (as promised) of our beautiful hotel . . .

A Full Day of Rest

Today was a true day of rest . . . we had nothing on the agenda . . . no appointments . . . no tests . . .

I slept in . . . had some breakfast . . . took a looong nap . . . took a shower . . . just had some dinner . . . then am getting ready for bed.

I am thankful for a restful day . . . apparently I needed it . . .

I got to talk to the family tonight for a while on the phone. They are doing great (or so they say?!) . . . it was so fun to hear their sweet little voices talk about all their adventures. I am missing them but am feeling so busy with appointments and things to do here to fully take advantage of this experience, there are not a lot of hours in the day to miss home - a blessing in and of itself.

Tomorrow starts the week off with a bunch more tests . . . I'll let ya know . . . for now, I'm going back to sleep - Happy Sunday!!

A Great Day Out . . . in so many ways . . .

Praise the Lord for today . . . at 11:45 I got to the hospital to remove the impedance tube from my nose!! HOORAY!!! It was not a fun night - again, I'll spare ya the details but it was terrible . . . and it is over!!!

We decided to take a much needed break from the hospital and hotel and headed to the local mall - Cherry Creek. Over the last few days, we've met a sweet woman who traveled to Denver alone. She was really interested in going to the mall as well so we adopted her for the day. We really enjoyed checking out the new stores (and yes - I'm in a wheel chair - it's a huge mall and after all the tests and lack of medicine this past week, I have the lung capacity of a flea)

We decided not to go into "BCBGMAXAZRIA" . . . Janice (our new friend) said, "If you can't pronounce it, you probably can't afford it!" What a hoot . . . and have you ever heard of a frozen yogurt bar? It looked like a lot of fun - a whole bunch of yogurt flavors then a bar full of toppings . . . sort of like a self serve Cold Stone. We were getting hungry so we headed over to Johnny Rockets for some yummy hamburgers, french fries and happy ketchup . . .

We finished walking (or riding) around the mall and then hit a road block . . . this is a choice between two tasks (back to Amazing Race analogies) . . . we heard about a light parade happening in down town Denver . . . we had to decide to navigate a bus system we had no idea what to catch or where OR flag a cab . . . we went with the cab . . . and it was not easy . . . and it was cold . . .

You can BARELY see my mom at the end of the light path in a stripped shirt - had to catch her in the act . . . and can't add sound but you'd hear Janice and I cracking up at the fact that not a single cab passed as soon as she decided to take her street side position BUT at last, we were able to find one, hopped in and rode downtown. We had to walk a few blocks but the show was amazing . . . as close to Macy's Day Parade I'll ever be . . . they need no more words . . . I'll let the pictures speak for themselves . . .

The parade ended with a visit from Santa (the most real looking Santa I'd ever seen . . . who knew the North Pole was in Denver?!) . . . we flagged a taxi (like experts this time), rode back to the hotel, wished our sweet Janice a good night and hunkered down for the evening.

I'd been texting Travis for reports of the Apple Cup and was thrilled to find it on TV here in Denver!! I caught the last few minutes and screamed a whoo hoo . . . GO HUSKIES!! Could this day have been any better?

We are really feeling all the prayer and support here . . . everything is going so well - friendly people, a comfortable hotel room, competent doctors and nurses, funny experiences, a nice time of bonding for my mom and I, happy reports from home . . . it's really going so well . . . thank you so much for your part in our journey!

A Day Full of Tests . . .

This morning we woke up at 5:45am to catch the 6:15 shuttle and we hit the ground running. I had a full schedule of tests today which I wasn't necessarily looking forward to it but am looking forward to lots of results. I started out with a routine echo scan - normally super easy ultrasound of the heart . . . but of course, I am not a routine person. For some reason, my heart wasn't clear on the screen - not a sign of anything bad - just a sign of a new approach . . . I was lucky enough to receive an IV of some contrast in order to complete the test. (please note the sarcasm - it's a running theme today . . . OK, everyday but especially today)

I finished that test in time to head upstairs for a bone density scan, a CT of my sinus and a CT of my chest. I was lucky enough to sport a fancy gown . . .

After the scans, I headed back downstairs to the allergy department for an hour long skin prick test . . . or so we thought. They began the test only to discover that two of my non-asthma related medications were interacting to cause a histamine blocking reaction . . . that meant that the skin prick test would not work for me . . . again - I'm not a normal person - sensing a trend?! . . . I was sent back over to the laboratory for some more blood drawn.

After the blood draw, I was back upstairs for a bronchial provocation test (more time in the body box . . . this time with some nebulizer treatments full of triggers in hopes of flaring my asthma . . . yup - you heard that right - we actually flared my asthma on purpose . . . are these people crazy?!) . . . I survived the box for a second time and was treated to a laryngoscopy (a special little camera sent up and through my nose with a series of breathing and speaking exercises . . . she discovered I have no vocal cord dysfunction of which she was surprised as I lose my voice with asthma every time . . . scratch that off the list)

We had a few hours before the next procedure and learned that the hospital was having a Chocolate Factory . . . we headed over and met Willy Wonka . . .

Apparently, it's a yearly event for the staff and patients of the hosptial - we just happened to be here on the right day . . . they even gave us the chance to win a prize with an envelope . . . neither one of us had a golden ticket but enjoyed the silly event and know the girls will love to play with the envelopes when I get home . . .

We left the fun of the Chocolate Factory on to the fun of the PH Impedance Insertion (WARNING: the following photo is not for the faint of heart . . . ) I'm being ridiculously sarcastic in saying this procedure was fun - I won't begin to describe the process as some of you may be enjoying a cup of coffee during this reading . . .

I am lucky enough to wear this device home along with the recorder box for the whole night!! Yippee for me!! (again reminded this is not a vacation!!) Although it's pretty uncomfortable and bizarre, I am glad that they are so thorough in their testing here.

We called our shuttle and our friendly driver Chad brought us back to our hotel . . .

My mom offered to stop for Slurpees (as you know, one of my addictions . . . ) and jokingly asked if I wanted to go in with her . . . I said I'd tell the cashier "This is a stick-up . . . my nose!!"  Needless to say, I stayed at the hotel! I texted Travis to tell him about the day and he said, "Wow . . . poked, prodded, scoped, scraped and scanned?! They're going to know you better than me!!" It cracked me up!

Tonight is not the night I will be exploring the city - I don't want to scare the locals - so, we ordered pizza to be delivered, I put on my cozy socks (thanks mandy!!) and we're passing the time playing some games . . .

The countdown is on . . . tomorrow at noon I get to return to the hospital to remove this device . . . that's only 17 hours away but who's counting?

National Jewish Hospital . . .

So I realized at about 4 o'clock this morning that I am not on a vacation . . . being off all my asthma meds has lead to quite a flare-up and then not being able to neb my way through them . . . let's just say I'm glad to have made it to the hospital on my own today in a shuttle - not an ambulance.

The shuttle driver is so friendly and the 20 min drive to the hospital quite pleasant. The air is cold and crisp but, as you can see in the photo, sunny . . . not what we expected. As we came around the corner and could actually see the building we'd be checking out online for months, I can't begin to describe what I felt - it's really happening . . .

We went into the facility and went through the check in process . . . we were then lead to a large waiting room and I was overwhelmed with just how many people are here! Lots of people with coughs and inhalers and oxygen - I found my support group!! I was called back to the second check in process - a few questions, height, weight, blood pressure, oxygen sat level and a spirometry test (blow in a plastic tube and see how long you can hold that - pretty fun and exciting).

I must have passed the first test as I was then escorted into a doctor waiting room. A doctor intern came in and for almost an hour asked me a huge series of questions to get a feel for my case - she had the tiniest handwriting - apparently important for writing an hour long of answers . . . then I got to meet my doctor for the whole time I'm here. Her name is Dr. Gogate and she was fabulous. She is old enough to have done this awhile but young enough to be relevant. She gave an overview of her plan for me while here in Denver and decided to add three more tests and procedures to my already full schedule. She said it is not going to be fun or easy but figured that I didn't come all this way for nothing - she couldn't have said it any better. Although I'm not completley looking forward to some of the tests to come, I am so ready to have some answers and solutions for better managment of this craziness called my life.

From the doctors check in, I was lead over to the lab where they took at least 6 vials of blood . . . good times . . . not painful but definitely left me a little light headed - a hamburger is in my future! I have a nurse for the time I spend here whose name is Sue . . . she is a little like everyone's favorite grandma . . . she is sweet and caring and very informative. She walked me through the schedule with details as to what medication to take when etc. . . then off to a Pulmonary Function Test. For this fun adventure, you sit in what's called a "Body Box" and go through a series of breathing exercises while your nose is plugged and you have your mouth on a snorkel piece. . . more good times. The best part was, however, after the test, they gave me a neb treatment!! I felt so much better!! We exited the hospital for the evening and waited for the shuttle outside in the crisp cold Denver air.

And yes - I successfully wrestled the camera away from my mom to take a picture of her . . . oh the tables have turned . . . for at least one picture.

We rode the shuttle to Burger King, ordered dinner (restoring the lost iron from the blood draw!) and headed back to our hotel . . . I've got another long night without meds and a crazy schedule for tomorrow . . . better think about bed soon . . . I so appreciate all of you - our friends and family back home supporting us through prayers, emails, texts, blog comments and happy thoughts . . . got to talk to the girls tonight and they said they are praying for mommy to have lots of fun at the asthma hospital . . . can you get any more optimistic than that? Love those little ladies - and I'm doing all this crazy stuff for them . . .

The Amazing Race has Begun

Ladies and gentlemen . . . boys and girls . . . we are in DENVER!!

Before I get to far ahead of myself let me take you back. Yesterday afternoon I hugged my sweet little girls and kissed my fabulous husband good bye (definitely not the easiest thing I've done in my life . . . ) and headed down to a hotel in Seattle . . .

My sister dropped us off with a cart full of luggage and we quickly went to sleep anticipating an early morning. We awoke at 4:30 am . . . an incredible feat if you know my mom or I . . . and jumped aboard the hotel shuttle. Upon arrival at Sea Tac, we got our boarding passes, checked our bags (for a meager fee of $20 a piece - what is this world coming to?!), went through security (because my mom has a pace maker, she can't go through the metal detectors so she was treated to a full pat down . . . good times), then sat down for breakfast. It was soon time to head to the boarding gate. On the way, I decided I must have a coffee . . . the Starbucks line was at least 25 people long so I'm sorry to say Melissa (my Starbucks barista sister) I chose the no name coffee stand down the hall that had only two people in line - I love me some Starbucks but am not that snobby - not worth missing a flight for. Anyway - back to the real story - we began the trek to the boarding gate. Feeling quite asthmatic (as they've been tappering medications before the testing) it felt as though we had to cross three county lines to get there. We arrived just in time to board the plane. Our seats were cozy and we settled in for a ride . .

For a little over two hours we chatted (well . . . I whispered . . ) and enjoyed the flight. Modern technology is incredible as you are now able to access the internet with a wireless connection from the air!! I tried despretly to send a blog entry from the sky but it wouldn't let me enter the site . . . I have proof of trying though . . . and am still beyond impressed it's even possible . . . where are the Jetsons?

The flight was smooth sailing until the final 20 minutes or so of landing when we experienced a roller coaster of a ride with turbulance. It was not the best feeling ride I've been on but am happy to report that the wheels touched the ground. We were super excited to officially be in Denver!! Still dealing with the asthma, I got to neb right as soon as we departed . . . I am sooooo thankful for the portable nebulizer that we purchased (thanks to the generosity of our dear friends at Grace Lutheran Church) . . .

I finished the neb treatment and we started on the next lag of the Amazing Race . . . finding our baggage in the Denver airport. It is no exaggeration to say that we walked a mile, rode on moving sidewalks, took an elevator down, took a train over, rode another escalator up, walked another mile or so and found our bags.

After grabbing our bags, we found a Super Shuttle and bought a round trip travel ticket to our hotel then back to the airport when this journey is over. We waited in the sunshine (is this Denver?) for the Super Shuttle . . . a friendly driver picked us up and away we went . . . I'm still looking for Phil and the clue boxes (Amazing Race reference for those who don't know about the greatest show on TV). On the 45 min ride from the airport to our hotel we chatted (well . . . I whispered) with a man who's friend suffered from severe asthma, traveled to Denver, and found a solution . . . he went on to live a healthy, well managed life to this day. It was so encouraging to hear a real success story.

We arrived at the beautiful Marriott Towne Place Suites (the building used to be a printing press so it has some amazing architecture . . . photos to come later) . . . thank you Brian and all involved for choosing such an incredible place to stay and making this journey possible - I can't begin to express what this means and don't want you to see me cry online so I'll stop for now . . . We were welcomed by the nicest hotel staff ever who were beyond accomidating . . . we found our room, I nebbed, and my mom unpacked.

And yes . . . that's me on the couch . . . it's comfy in case you're wondering. We have a spacious living room, a full kitchen, two large bedrooms, a nice bathroom and even a little table to play games on at night. It is heavenly . . . 10 days in a hotel will not be so bad with so much wonderful space. Because of the full kitchenette, we decided to fill our fridge and cupboards with good healthy food so we can eat most meals at home and pack snacks while we travel back and forth to the hospital over the next week and a half. Our super accommodating hotel offered us a free shuttle ride to the local grocery store.

And yes . . . my mom took my picture in the grocery store in Denver . . . this blog with not lack pictures to follow the stories - that is a gifting my mom has . . .

We rode the shuttle home . . . ok - the hotel but good that I automatically wrote home . . . and I nebbed while my mom put away groceries . . . she's definitely having to earn her keep on this vacation. We are settled in, enjoying some food and here I sit . . . nebbing and blogging . . . so excited to be here . . . can't wait for tomorrow when I get to meet with my team of doctors and begin the testings . . . I'm optimistic, excited and just feel so overwhelmingly blessed to have this opportunity . . . within hours I'll be stepping foot in the number one respiratory hospital in the country . . . YEAH DENVER!!!