Phee-wee!

There are a few things I've learned about the whole hospital/doctor thing lately...



1.) Communication break down is 99.5% of hospital snafus.... this is not anyone's fault, a lot of time people just go off of assumptions. For example when the pulmonologist gave us the news that Faith would most likely need the ventilator for the next few weeks, thus we would need to remain in the hospital for that duration he didn't know that we have a ventilator in our basement, albeit covered with dust, it has sat for the past eight months ready to switch into gear when called.



2.) I've also learned that when a patient perks up and is literally trying to crawl out of the bed it is supposed to be confined to for the next "few weeks" that it's just point blank not going to happen.



So needless to say at rounds yesterday I begged to do this at home. The doc's eyes widened, "YOU HAVE A VENT AT HOME?" And when he gave us the ultimatum if we could get the vent to the hospital that day, and it checked out OK we could leave.



You better believe we moved Heaven and Earth to make that happen (that and my awesome cousin dug it out of our basement and brought it to the hospital).



The result was that WE'RE HOME!!!



While Faith is full of energy (hmmm...'roid rage anybody?) she is still sick. This morning I was questioning our decision to leave when she was working pretty hard to breathe. We also are finding it difficult to keep her on the vent (Thank you Lord for not allowing our child to walk until she was 2 1/2 and not attached to 10 pound-plus machine by a 3 foot cord) so we are allowing her to be off for periods of "freedom" laps. The result is her running around like a banshee while gasping for air. This is when I find myself thinking, "was trying to keep her confined to the hospital bed better than this?"



I guess we'll have to wait and see. But if I have learned one more thing about the whole doctor/hospital thing it's that home is a healing place.



Thanks again for all of the prayers!



Jen & CO.

Perhaps I was a little premature on that last one. Faith looks worse then yesterday. The pulmonary team just checked her out and said there is not a rush to get her off the vent. The doc. also said that it could be "a couple of weeks."

*Big sigh*

Faith is doing better since our last post. Yesterday she was able to sit up more and wanted to read books (which is her absolute favorite thing to do when she is feeling well and it was a big indicator how crummy she felt last week when she would shove a book away). Her overall disposition has improved dramatically. Sticking to the original plan we took her off the vent yesterday just to do her nebs and it became apparent that she still really needs the positive pressure. So, she's still on the vent, but perhaps we will trial her off a little today.


That's about it from here.

Will post more soon.

Our Little Valentine

Usually when Faith is hospitalized she is at her worst during the admit phase. This go around was completely different. Faith was sick when we brought her to the hospital but she really went down hill in the days that followed. For the past three days she has been lethargic and really working to breathe. Nights have been very rough around here. Last night she was on 70 percent oxygen, heart rate in the 180's (and this was when she was "sleeping") with very high respirations. Needless to say she was placed on a ventilator for the first time since last June.

The morning started out rough, but once her settings were adjusted she began "perking up a bit." by this I mean she smiled for the first time since Thursday and will tolerate sitting up for a few minutes. Her color has improved slightly, although she still has an overall dusky tone.

The plan is to keep her comfortable and vented for the next 24 hours and then begin weening.

Thank you for your continued prayer and support.

Jen & CO.

Here we go again!

Guess what Faith got for her birthday?

RSV!


A thank you note is on it's way to the Chuck E. Cheese in Louisville, CO. Yes, we knew when we took her the oversized rodent's petri dish that we ran the risk of Faith getting sick, but we were willing to take that risk. It was her birthday after all and she deserved to be at the place where, "A kid can be a kid."


And so now our kid sits in the Children's hospital- not the outcome we hoped for. We tried as best as we could to let this run it's course at home but we simply did not have enough oxygen to support her. Wednesday night she was on 8 liters sating in the low 80's. We have home tank at home that goes to 10 liters, but at that rate we'd blow through it in a few hours. So needless to say we are here where there is an endless supply of O2.


While Faith is on antibiotics, steroids, and frequent breathing treatments, there isn't much they can do to treat RSV. At this point it's all about keeping the virus at bay so it doesn't create secondary issues.


Joking aside, it's very easy to use Chuck E. Cheese as our scapegoat and blame this infiltration on taking Faith out but I am not going to do that. Even if she did get sick there (and yes, when she was literally licking the bumble bee machine Brian and I both flinched and said a few "Hail Marys".) we are not going live our life in fear of warding off the next illness. Yes, Faith is fragile, yes she catches things very easy, but if she were given a choice of going and having a ball and knowing it would come with the consequences of spending a week in the hospital she'd say,

"Bring it on!"

Looks like we'll be in for a little while. We'lll update more soon.

Jen & CO.

Heaven's Special Child

A meeting was held quite far from Earth

"It's time again for another birth,"

Said the angels to the Lord above, "This special child will need much love."





Her progress may seem very slow. Accomplishment she may not show.
And she'll require extra care from the folks she meets way down there....

She may not run or laugh or play. Her thoughts may seem quite far away.






In many ways she won't adapt and she'll be known as handicapped.

So let's be careful where she's sent, we want her life to be content.

Please Lord, find parents who will do a special job for you.


They will now realize right away the leading role they're asked to play.




But with this child sent from above comes stronger faith and richer love.





And soon they'll know the privilege given in caring for this gift from Heaven.

Their precious charge, so meek and mild is Heaven's very special child."
-Author unknown

Happy Birthday to our precious Faith.