Monday, December 8, 2008

Wednesday Update (and that's as original as this title is going to get)





OK...my recycled post bought me a few days..realizing it's Wednesday if I don't post soon I might be banned from Barnes and Nobel. ;) As always, lot's of stuff I want to say to Faith...but not enough energy to do it. So I thought I'd take this opportunity to update you all on some general stuff. I don't mention a lot of things on this blog because I don't want to sound monotonous to the people I talk about this stuff with on a day to day basis. But then it occurred to me that there are a bunch of you who I don't get to talk to in person, thus I think an update is in order.

Nursing:

As you may or may not know nursing has been a thorn in our side for the past several months. I am hesitant to write about it because I don't want to offend any of our past and present home care nurses. As you know Faith requires skilled nursing care. I cannot tell you the number of times people ask me why we can't just hire a nanny...I'm not even going to go into the explanation of why that's not a possibility (once again..don't have the energy) but long and short it's not an option. So private duty nursing IS our childcare, which has been very stressful with seamlessly revolving door the nature of the business seems to have. A few months ago we panicked when we thought we were without a day nurse but to our relief the agency sent out a temporary person who we REALLY like. She's ours until they find a replacement, and as with this nature of the business it is probably going to be a while until they do. Which in this case is very good news. I cannot tell you the relief we feel when we are at work and we know Faith is in good hands. I hope this one is a keeper!


Sleep:

When people ask me about how Faith is sleeping I never know how to answer the question. Compared to where she was a few months ago she is sleeping better. Compared to what a child her age should be sleeping, it's still a huge issue. She no longer bangs her head on the crib rails for hours (we solved that problem by taking the crib away and she now sleeps on a mattress on the floor). Faith never seems to get into an REM cycle. The only way I can explain it is that she is just "touchy" and restless. We gave up on night nursing because it was more trouble than it was worth, so Brian and I take turns sleeping next to her in the room. I just wish we knew why she is so restless at night. And I really wish we had some prescribed medication that could just take the edge off (hint, hint).

When Faith is sick (which she is, yet again) the nights are horrendous. Last night she slept about 2 hours total...(thanks to Benadryl finally kicking in) these nights are difficult because she requires lots of suctioning and nothing seems to soothe her.

Illness:

Following her brief hospital stay, Faith was prescribed two different antibiotics. She just finished them up this past Sunday and is sick again. This time it's with an increased amount of secretions which just isn't fun for anyone involved. I cannot even count on one hand the number of weeks she's been well in the past few months. Faith looks healthy (and in some ways she is) but she still has very fragile lungs and germs have instant access to them (through the trach). So needless to say it's going to be a long winter.

Hmmm...am I missing anything? I think that's about it.

We're just hustling and bustling around trying to get ready for the Holidays. I'd write more but right now there are cards to be addressed, lunches to pack, and a little (semi) sleepy girl (make that two...) who is ready for the sugar plums to dance about her head...(let's pray these are the extra sleepy kind.) ;P

Thanks for checking in,
Brain and Jen

5 comments:

Marissa said...

I am so glad to hear you finally have a nurse you like and trust. What a blessing. Why is she temporary though? I would fight to keep her, with your history of bad nurses. Hopefully she can stay long term.

Unbelievable that Faith is sick again. :( Have you been able to get her on Vitamin C?

Praying as always,

Alicia

Rachel Marini said...

Jen,
So sorry to hear that Faith is under the weather. It's just so different having a sick child with a trach and/or vent than a sick 'healthy' kid if that makes sense. I don't know how you and your hubby manage to be Faith's night nurse.. but I definitely understand that sometimes it's just easier to do it yourself. Gabe's starting to get sick too :( Hopefully it'll be over before Christmas though, right??
Also- SO happy you have a good day nurse. Someone you can trust to leave Faith with! But seriously why can't you just drop her off at a daycare? Don't you think they know how to manage a vent? :) lol.
Hope you find some humor in that, I of course was totally kidding.
Have a good night, we are thinking of you guys.
Rachel

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