Just a quick update to say that little Faithers is home and doing "well." She's still breathing pretty heavy, but nothing we can't manage from home.

Thanks for all of the prayers and well wishes.

Have a great weekend!
Jen & CO.

No, we haven't fallen off of the face of the Earth (yet)

On a typical day if you haven't heard from us in a while you can assume that no news is good news. Then again, we are far from the typical family and so this post warrants some bad news.



Faith is in the hospital (AGAIN). Ugh. This time with para-flu. I suppose this how the flu can seriously affect the elderly, young and medically fragile. That's Faith (well, except the elderly part of course).



About a week ago Faith had a high fever (which is very unusual for her), high heart rate, increased O2 requirement, yellow/bloody secretions (and lot's of 'em), but she wasn't "working" to breathe.



On a weekend trip to the ED, the culture showed up as para-flu. We were warned that the respiratory part was coming- and were given the option to stay (to this of course we said, NO WAY!) and took our sick little puppy home and hoped for the best. Sure enough, 24 hours later the respiratory part of this virus came. We actually brought Faith in without her vent (even though she was reeeeeeally working to breathe), but after a cap-gas showed very high levels of CO2 she became vent dependent once more.



So that's where we are today. She looks terrible and I am sure she feels even worse. Faith just needs some hospital tlc, and will most likely be out in few days (knock on wood).



Sorry for the lack of updating, prior to this we've been crazy busy with numerous appointments, crazy work schedules and that little thing called life. It was only a matter of time before it took a hospitalization to slow us all down.

Thanks for checking in,
Jen & CO.

A step in another direction

One question we receive frequently is whether or not Faith is walking yet. Being someone who creates cheesy movie clips when my daughter conquers the smallest of milestones, you can bet your bottom dollar when the day comes when Faith takes her first steps you will all be the first to know. Meanwhile....we live by this pronouncement...

While walking may be overrated, breathing is certainly not. While she is still dealing with a lot of secretions (and especially frequent nighttime suctioning which, as you can imagine, is a joy for everyone involved) post-hospital, she is back to her "new" baseline; vent-free! Yes, you heard it- Faith officially breathes on her own - with the help of a little O2 of course - but every breath she inhales is hers and hers alone.

I might be biased but I think this accomplishment trumps walking any day!

Have a wonderful week!

Jen & CO!

PS: Oh and I almost forgot! Another Reming reached an important milestone this weekend- My sweet husband has now officially graced this Earth for three decades (bet you thought we had BOTH crossed that threshold already (we get that a lot) while in "stress years" we should be receiving our 15% discount every Wednesday, Brian is the first to officially join the 30+ club. :)

And just because the stars aligned just right, we got to cheer on the Nuggets in the Semi-finals ON Brian's birthday (Thanks Josh&Noel for the tix And GrandMary and Aunt Kristen for watching Faith! You truly made our rare night out happen!)

All is well

I still cannot believe that a week ago Friday it took 24 hours for Faith to open her eyes, another 72 before we saw the slight glimpse of a smile. And one week later, she is bright eyed, smiling and out of the hospital. :)



While I am relieved that her illness wasn't anything too severe, I am a little alarmed by how quickly she went downhill with this just being a cold. If she reacts this way to a cold, what will happen when she gets something else? The truth is she has had MANY colds this winter, and for some reason this one was just different and hit her another way.



While I do think that this was inevitable, I can't help but think that Faith missing some of her meds might have played a role. We are in the middle of another insurance debacle which has forced us to pay full price for Faith's prescriptions (that's right, without a copay). Most of her meds are manageable $30 here- $60 there- not a huge deal. But a few weeks ago when I went to pick up a low-dose steroid she takes to help her immune system and was asked to pay $400 for it, I declined and prayed she would be OK with out it until we get this mess straightened out . Ten days later she lands in the PICU. Like I previously said I think this strain was so severe she would have been sick regardless (after all, she's had two other PICU visits this year while on this med.) but blaming insurance companies does alleviate my mommy guilt.

On another note, this past Friday the date- May 15th- loomed over me for the entire day. I knew there was something significant about the date but for the life of me couldn't remember what it was. Was it someone's birthday? Did I forget to pay a bill or go to a doctor's appointment? That night as I set my alarm clock on my cell phone and glanced at the date once again it came to me- awww...May 15th, 2007. Faith's due date. A year ago I would have known this date was approaching- like an anniversary of a death, I would have felt great unease in the days prior.

But now, two years later, I gave it five seconds of thought...gave an out loud "Huh." Smiled, turned over and quickly fell asleep.

Such an epiphany can only be followed by such eloquent words..

"When the heart weeps for what is lost, the spirit laughs for what it has found." -Sufi Aphorism

I am so blessed to have found all of YOU. Thank you for sticking with us!

Jen & CO.

On the mend

My apologies for not posting sooner. While I have more time on my hands than usual (not chasing a toddler around, off of work, etc) the hospital is full of friends and spare moments have been spent reconnecting with all the people who helped get Faith where she is today.

The good news is Faith is out of the PICU! Needless to say we were thrilled. Not only are the accommodations MUCH more comfortable on the floor, but Faith's second family (primary nurses, etc.) are up here as well. SO when they gave us a choice last night, there really was no choice at all. :) Getting out of the PICU also meant Faith was able to go back on her home ventilator (she was on a more powerful vent prior) which is one HUGE step in the right directing.


They are labeling Faith's junk "tracheitis" which bascially means a baterial infection that got the best of her. She also tested postivie for Rhinovirus...no that's not some strand of the Swine Flu (c'mon people!) or RSV (I was almost postive it was) but the common cold. At first I was baffled- this is the sickest we've seen Faith in a LONG time and she has had many colds since then, why was this time so different? Apparently the hospital is filled with kids with "colds" and for a child with Chronic Lung Disease a cold can become severe (especially coupled with the petri dish that is her trach).


While she can climb up and down stairs, pose in cute Easter dresses, and wrestle with dogs, she is still a medically fragile child (with very crappy lungs) who beat the odds and survived.

Faith is still "working to breathe" this morning. You can see her ribs with every breath, however she is alert, interactive, and sometimes smiling. :) A WORLD away from the kiddo we took in here on Saturday.

The plan is the wean Faith on her vent settings while she gets over this hump. She is receiving two types of IV antibiotics, steroids, breathing treatments, etc. But what she needs most of all is time.

I have to say it has been nice to be able to lay next to Faith and just be. These days she is so mobile she doesn't let anyone hold her for a second, nonetheless stay still for more than two. Here we are free from the distractions of laundry, cleaning, and all the household demands that distract us from what really matters- being together.

Thanks for all of the prayers!

Jen & CO

Mother's Day

The ultimate gift...



My Faith.


Today's gift also included open eyes....but perhaps the greatest gift is of all is the reminder to not taking one day of this precious life we have for granted.

Happy Mother's Day to all you beautiful moms out there!

Jen

Mayday

Faith gets sick a lot. There is hardly a week that goes by where her secretions aren't yellow tinged and her stoma smells. Knowing this, we are so use to her frequent illness that we take them in stride, and probably are a little too nonchalant about it. When the doctors tell us to come in, our response is usually "naaaa...she's not THAT bad."

Last night, when Faith started to go downhill (very quickly) once again we erred on the side of non-caution - and that lead us to where we are today: The PICU.

One minute Faith was fine. The next she was unable to breathe on her own, retching, retracting, extremely high heart rate and respiratory rate. We took her into the ED, they transferred her to the floor, the docs up there took one look at her and she was sent to the intensive care unit.

The past two times Faith was in the PICU this year were not like this. This afternoon she is non-responsive, lethargic, and breathing really, really hard (on full vent support).

I don't usually worry when Faith is sick. We almost pride ourselves on being able to keep our cool when she is hospitalized.

This is different.

Maybe it's because when I was out with friends last night, a sudden feeling of alarm came over me and I was immediately worried about Faith. I have no idea why... when I left her with Brian she was her happy go lucky self. I had no reason to suspect anything different. But my mind played the "what if" game.....and then when I got home and Faith was in respiratory distress, I knew this time was indeed different.

I will update more when I can.

Thanks for checking in, and thanks for keeping little Faithers in your prayers!

Jen & CO.