Saturday, March 3, 2012

Hello again!

Well, it has been nearly two years since our last blog post, but for many reasons it seems high-time to begin posting again on a regular basis.

For starters, Evelyn's little brother Owen is now 2 1/2, and very good at it. :) Evelyn will be FIVE in a couple months - which is just crazy - and Daniel and I will be another year older soon as well. In most respects, Evelyn has had a great couple of years. She has been in school, wowing her teachers and therapists with her knowledge (and fashion sense!) and continues to be the such a sweet, happy little girl. Since the winter of 2010 we've managed to avoid any hospital-worthy respiratory issues, though her seizures have caused some trouble from time to time.

Which brings us to now, March 2012. Over the last few months we've noticed on occasion that Evelyn will slip into a very labored breathing pattern - lots of noisy snorting, chest heaving, etc. She then resolves the issue on her own and carries on with her day. Typically these episodes don't impact her oxygen saturation, but since they don't look or sound like much fun, we've been watchful of them. About three weeks ago Evelyn got a cold. It was just your average, run of the mill cold, and overall she handled herself well (no scary moments with oxygen dropping, no fevers, etc) but the cold just wouldn't go away. We started her on an antibiotic just in case, and as we were finishing it we came to realize that though the cold symptoms were gone, she was really struggling with her breathing. Anytime she got 'up' to do anything more than lounge and watch movies she would slip into the obstructive breathing pattern - and wasn't able to really recover from it without a breathing treatment or time on the bi-pap.

Well, that's no good. So, we took some video and went to see her pulmonologist. Though I had a litany of potential causes to discuss, as expected it comes down to muscle tone. Evelyn's muscle tone is very low (weak) in general, and that affects the muscles in her mouth, throat and airway as well. This means that the breathing difficulty is occuring because her tongue is ever so slightly slipping back and blocking her airway. Because of her weakness she has trouble pulling her tongue back 'up', which leads to saliva pooling in her mouth. When she finally recovers from the obstruction she then has to deal with swallowing an overload of saliva. Basically this issue is only resolved by placing a trach. We thought in general that Evs might need one someday, but now it seems fairly clear that that day will be sooner than later.

We will have a follow up appointment in two weeks to discuss how she's doing and what the plan will be going forward. We need to spend the next two weeks evaluating her breathing - how frequently is she obstructing? for how long? does it affect her o2 or heart rate? how is it resolved - position change, self correct, etc? The answers to these questions will give us a good idea of when the surgery will need to occur. My expectation is that it will be needed in the next couple of months, as I'm just not seeing her improve after this illness the way I'd expect.

In general we are so thankful that a trach is an option for Evelyn, and we're glad we've caught these issues before they became worse. Of course surgery is scary, and we worry for Evelyn - both for her health and that she will feel 'okay' about going through all of this. We want her to have a happy life, and to be as healthy as she can be. It does make us sad, because the need for a trach is yet another reminder of how medically fragile Evelyn is, and of how fleeting life is for us all. Having a trach is highly likely to greatly improve her quality of life, and will likely extend her life significantly as well - so that's why we feel its the right choice.

We hope the few people that still read this - or that start reading it - we be praying for our family and sending good thoughts our way.


Anonymous said...

I am pretty sure we can get/ make some bling for her trach! I am on it! Thinking of you all as always.
Martha, Dan and the boys

Jodi said...

Kim, I'm so sorry you're facing this right now. We'll be keeping you and your family in our prayers as you continue to learn more and make decisions on Evelyn's behalf. Sending our hugs and love.

Kara said...

Somehow landed on your blog! We are facing the exact same issue with our son, the poor muscle tone is really affecting tongue control and breathing. Things go down hill quickly as he has troubles with all the extra gunk. Evelyn is beautiful (we have an Evelyn too!) and it's wonderful to hear how well she's been. I pray you will be given much grace as she needs your love and care more than ever.