Monday, August 16, 2010

CF Telethon

A childhood friend of mine now works for a NC television station that holds an annual telethon for Cystic Fibrosis every summer (read more about that Here). Pat met up with us a few weeks ago to film a short clip that was shown during the telethon (see below). I thought you might like to watch might also like to know that the telethon raised nearly half a million dollars for CF research!!!

On a related note, a young CF girl named Jaimee passed away yesterday just a few days after receiving her long-awaited double lung transplant. Jaimee is the cousin of a dear friend of mine...she leaves behind a husband and an awesome extended family who could really use your prayer today.

With another death in the CF community, I'm reminded more than ever that there is still no cure, but that we are getting closer every day to finding that cure and making a HUGE difference in the lives of thousands of CFers around the world.



Friday, August 13, 2010

Healthy Heart

We drove back to Duke yesterday for Tricia's post-op and for an echocardiogram of Gwyneth's heart.

Tricia is feeling good and the pain meds have finally exited her system. The surgeon reports that everything looks good and is healing nicely. She'll have another post-op in about two weeks.

Gwyneth has had a PDA since birth (even though the heart valve had appeared to be closed a few days after her birth, it was later discovered to still be an issue). In most cases in young children, the valve eventually closes without ever having caused any issues. Every report through yesterday showed that her valve was still open, but, this latest echo showed that it is now closed. In the words of the cardiologist, Gwyneth has a "perfectly healthy heart". This is great news because it means she avoids the surgical procedure which would be needed in a few years to close the valve (and we won't be scheduling another cardiology appt for a very long time).

Thanks again for your prayer for my two girls!


Tuesday, August 10, 2010

10 Years

Ten years ago this week, I met Tricia (read more about that story Here). You'll probably think this is untrue, or at least a little crazy, but I knew that first day that she was the girl I needed to spend the rest of my life with. I can't imagine even attempting to describe what these ten years have meant to me, so I won't try...but, I think these two photos sum it all up rather well...


Thursday, August 5, 2010

Thursday Morning Update

Some good news...Tricia was in serious pain immediately out of surgery, but after a few hours in the OR recovery ward, her pain meds finally caught up with her pain and she was able to be discharged to spend the night in our hotel after all!

After a good night's sleep, we were home by 2pm on Wednesday afternoon, just in time to tuck Gwyneth in for her nap. Tricia has had little to no pain since Tuesday evening and the mininmal bleeding has ceased. She will be on pain meds and heavy steroids for a few more days, which means she's feeling a bit loopy and having trouble sleeping for long stretches of time.

Of course, it's too early to identify any noticeable difference in her breathing, smell, taste, etc.

Thanks again for the prayer...Tuesday was a very long day and it was encouraging to know so many were praying for Tricia.


Tuesday, August 3, 2010

Sinus Surgery Update

Tricia's surgery went well. She was back in the recovery room as scheduled around 2pm. Since waking up, however, she's been experiencing a lot of pain, in her sinuses and in her throat (probably from being intubated). She's very uncomfortable, so instead of spending the night in the hotel with me, she made the decision to stay in the hospital at least until the morning.

We're praying she feels much better in the morning so that we can head home to Gwyneth. We're also praying an inpatient room will open up for her so she doesn't have to spend all night in the busy, noisy OR recovery ward.


Sinus Surgery Today

Tricia goes into surgery at 11:45 am today.

Sinus surgery is very common for cystic fibrosis patients, and even more common for lung transplant patients. In fact, it's surprising that she's made it this far out from her TX without the surgery.

The purpose of the surgery is to both open up her airways a bit and to prevent nasty bacteria and other stuff that could be harmful to her delicate lungs from finding a comfy place to hang out. It is often a rather uncomfortable, if not painful procedure that must be repeated every so often, but Tricia's surgeon is very progressive/cutting edge and has had great success with minimal pain/discomfort and very few repeat customers.

Obviously, anytime you're drilling around inside your head, there are risks of damage to the eyes, skull, brain, etc. The procedure may take several hours, but hopefully Tricia won't be required to stay overnight...we're still hoping that 2010 will be the first year of Tricia's life that she hasn't had to spend a single night in a hospital!

Thanks for your prayer! And, please, don't share your scary sinus surgery experiences here...Tricia is not encouraged at all by reading about how this might not be a fun experience.