Not such a great day…..

Well sorry for the delay, it has been quite a 24 hour period! We arrived in beautiful Sweden at 11:30 in the morning, settled into our beautiful flat DESIGN APARTMENTS and met our amazing hostess, Pernilla.

If you ever venture over to beautiful Goteborg, it is the best place to stay. You walk out the door to cafes and markets, and shops, (if you enjoy shopping, not my thing maybe if I had someone else’s credit card!) ….lots of beautiful pedestrian streets, just gorgeous!! However, I realize that’s not what anyone is hear to read about.
So, after a 24 hour trip with no sleep and another four hours awake to try to even out my jet lag, I arrived at the hospital. Exhausted, Maylie had fallen asleep on the cab ride to the hotel. She was sound asleep as I dressed her, carried her to the train, road the train (which she was more excited about than the airplane!) and then a four block walk to the hospital. Needless to say, I may have taken a nap in the waiting room. Then, I realized I was in the wrong waiting room. I made my way to the CF clinic, and met Kate, the vision of who you would want your child’s nurse to be. She was an incredible warm woman that was comforting to both myself and Maylie. Then Dr. Lindblad walked in, tall and quiet as I have pictured for the past couple of months. He invited me into their “exam” rooms. Complete with adult table and chairs, flat screen TV, slide, child size table and chairs, couch, kitchen set, dollhouse….sounding like anyone’s office? What followed was a two hour appointment, full of questions about Maylie and her life up to now, her treatment and medications. We spent quite a bit of time talking about diet and medications. Once I have a better understanding of all of this, I will write all I learn. But, for now, I will just say that we will have new options that I feel confident in.
After we finished talking he asked to do three cultures on Maylie. The throat, nose and perineal. (Has anyone else every heard of that?) Needless to say, Maylie was NOT impressed. She was crying so hard, it was horrible!! We all have those moments, but, they suck every time! Following was the part that shocked me. I said, is there anything left and Kate said, “no.” So, I picked up a sad Maylie and headed out the door. Kate stopped me and said, “the trust of my patients is of the utmost concern to me, do you mind staying for a while, so that she can trust me?” Of course, after the shock wore off I said of course and we went to the table where May had her cultures down, she laid her down and just sat next to her and stroked her hair, asked her about her plane ride, her sister and her family and school back home. She has such an amazing sense of what May needed to feel comfortable, I was immediately reassured of our decision. After about twenty minutes, Kate sent Maylie and I on our way, with a stroller for the week. We were out the door headed to the train when Kate came running down and said that Dr. Lindblad needed to talk with me….so, back up the elevator we went. That is when the news came, like a bolt of lightening. Anders had just called to verify insurance and it was denied. So many thoughts, so much confusion. We had come so far for nothing. Unless we could come up with $22000 to do the treatment ourselves we are just here for a vacation. Home we went, exhausted, defeated and depressed in dark, rainy Sweden.
I arrived home, snapped at my poor sweet mother for everything and call Sean, said you need to do whatever you can in the next day and a half to get her coverage back, call your uncle if you need to. Uncle Joe is an incredible attorney out in Portland. And sadly, I went to bed….for a very unrestful night of sleep.