I'm a full-time wife and mom of two adorable boys. When I'm not busy trying to keep up with them I enjoy photography, traveling, planning parties and a little bit of reading.

In February of 2008 I was diagnosed with an incurable terminal lung illness, though God promised me a full and complete healing. While we wait for His timing, we're taking it one day at a time, and standing in awe of how God's using all of this for His glory. The tough road we've traveled has given us a new perspective on the fragility of life. Memories are more important to us than ever before. The goal of this blog is to share some of our family life - the ups and downs, the joys and probably some of the pains as well. It's mostly meant as a personal journal of sorts, but you're welcome to share in it. We'd like to take this opportunity to say ...


Sunday, May 3, 2009

I'm baaaack!

So - we're back from the hospital - we got home late Thursday evening. The medicine change/transition went quite well, considering! I'm a lot more tired than I was before the change, but last night I did my first "increase," and after several more the doctor's confident I'll be back to my obnoxious, rambunctious self! Currently I still need oxygen when I walk any distance - so not around the house (though I should be using it to go up the stairs), but I definitely need it when shopping or going to church. Here's a few pics from our recent hospital-related experiences.

Aaron mixing our very last Flolan, just before we left for Pittsburgh on Monday afternoon. For those of you who aren't experts at speaking "the many faces of Alex" language - he's saying: "Oh my word! I cannot believe it! It's the very last time Daddy has to make this!" We still have to mix the new medicine - but every 48 hours instead of 24, and it takes probably 10 minutes rather than the previous 30!
A few minutes after the medicine change took place. I needed to be on oxygen for a couple hours until my body got used to the new stuff. For those of you who are used to "lobster-red Julia," you'll notice that my face is almost a normal color!
One of the nursing assistants, Beth, who remembered us from last time went home during one of her shifts to cut some lilacs from one of her many bushes, and bring them in to make my room seem more cheerful! I was totally bummed when we later realized that we forgot to bring them home with us!
The unit I was on (I was there last year too), used to be only used for people like insanely rich princes who were waiting for heart transplants - so it's called the Gold Wing. It's now just for certain cardiac patients. But the patio they donated, and the special elevator that goes only as high as the 3rd floor still remain - and the rooms are still private rooms, and the size of two normal hospital rooms put together! Apparently they used to order special catered steak and lobster dinners there every night, and have several big parties a week while they were waiting for their procedures. Last year I was too sick to make it out to the "gardens" - this time I was allowed to venture out (as long as Aaron stayed with me, and I took a pulse-ox to make sure my oxygen saturation didn't get too low). Aaron thinks my hospital gown made me look kinda Japanese next to the shrubbery.
Also taken outside in the gardens, Aaron did his best to keep the mood light for me! We were laughing up a storm out there! Laughter truly is the best medicine! I think that part of it was that we were releasing all the tension that had built - the med change went quite well (considering), and even though I was/am tired, we've been through that before, and have learned that with time my energy will come back. The "scary" stuff was finally behind us!

1 comment:

Beth said...

So great to see you up and walking around and looking so healthy! Praying for your full recovery and healing.