Camping out

I made it.  Last night I checked in, got a room, and and settled in here.  The unknown is now the known.  This stay is very, very different than a "cystic fibrosis" stay.  It has been an adventure.

I am not on a single antibiotic -- (you can't use antibiotics to treat colds)  I have no CPT to do, which used to take up most of my time as an inpatient.  I don't have a single IV med dripping during the day.  No seriously, not one, at all.

It has been lonely and boring.  New wing of the hospital, new nurses, new everything.  Usually in the past with my old CF regimen there were so many people popping their heads in and out of my room I never had a chance to get bored.  I haven't seen anyone since this morning.  It is so bizarre.  ... cricket ...

Boring is better than crisis though.  I will take boring over crisis any day.  I had no adverse reactions to any of the new medications I was put on, praise the Lord.  That was really my main concern or worry.  Severe allergic reactions are never fun to say the least.  I have experienced one or two, and that is more than I need to know I don't want to ever experience that again.

The days are easier than I would have imagined.  The nights are what are really different...

I do have I.V. meds, they all run at night when I am asleep, which is nice.   The so called "breathing treatment"  is not really what I expected.  It lasts six hours and also takes place while I am asleep.  They put me in a clear plastic tent.  The tent is misted.  They also put an "oxygen mask"on me and that is what delivers the antiviral medication.  The medication is highly toxic, so people are to enter my room while it is being administered at a minimum.  The people who do enter are wearing gloves, gowns, plastic face shields, and masks.  When the treatment is done I am covered in a powdery substance, and then must go shower immediately to detox and wash away the chemicals.  While I clean off they come and change my bedding too (also mandatory).  The whole thing seems a little bit sci-fi or something.  It reminds me of something that might show up on LOST, haha.

My cold is already feeling better.  My stuffy nose is dissipating.  My x-ray looked good.  My blood sugars are crazy out of whack, but they tell me it is probably because of the high doses of some medications I am on right now.  I have begun insulin shots, at least while I am in here.  One night down, four more to go, and my cold is already on it's way out.

So when you hear there is "no cure for the common cold"  it seems as though there is.  It is just a little bit intense.

Sleep escapes me...

Sleep escapes me.  Coffee or espresso keeps me awake the day after.
I can see that it is a nice day out right now-- very nice in fact.
I'm kind of in a haze though.... a sleep deprivation haze.
I pulled another all-nighter.  Not by choice.

I found out last night that my friend who I posted about HERE (a few posts down) passed away.  I pray that she knew Jesus and that she is resting in peace.  I was in tears over the loss of her.  The second close CF friend I have lost in a matter of months.  Oh, how I wish she had been able to get a transplant!
I am reminded at just how lucky I am.

These thoughts running around through my head didn't help my crazy brain last night.
Also, don't you hate it when you can't sleep, and you know you have to be somewhere early the next morning, so then you get all anxious that you can't sleep, which makes you even less able to sleep?
Or is that just me?

Well Levi had swimming lessons begin this morning, and by the grace of God we made it there, no sleep and all.  The water was nice and peaceful and warm.  I wanted to hop in and join the kids.  Last summer Levi overcame the scariness of dunking his head all the way under the water.  Today he was a little more hesitant but I'm thinking it was because he hasn't swam in so long.  Hopefully he'll catch back up to where he left off last summer in no time.  I know he will.

Well, *yawn*  until next time...

dreaming of nothing

again.  yep.

nothing better to do but type tired jumble

i made a list already

all the inventive thoughts

to dos

written down

to return to them in the daylight

i was laying against the mattress

with my ear pressed up against the surface

every time i breathe i hear the faint sound of springs

up and down

rise and fall

why?

i'm not heaving

i breathe normal now

silly mattress! 

no deep thoughts tonight

that is agreeable

'cause if your touring your mind

you'll get lost every time

i don't like to think about the past much

usually i do.

i like to think about the future

only because it looks bright

making plans

it wasn't bright earlier

the times they are a changin

it is so cold

the 1940's heater plugging away still

it's heating up

my eyes are getting heavy again

scratchy even

maybe i'll go back to listening 

to the boxsprings

and thinking not too hard tonight

or morning.

whateves.

Awake

I forgot to take my four o'clock meds yesterday....
Didn't take them until eleven at night.  SO.

Consequences for sure.


I couldn't fall asleep until three, and I'm up for the day at five.
Function well on two hours of sleep?  I guess I'll find out.  I have a very full day ahead of me also -- no time for a nap.  *sigh*

Have you ever tried typing in the pitch black?  I can't see what I am doing.  Maybe it's good practice...

Anyways,
Good morning world!

Cytomegalovirus Immune Globulin Intravenous (Human)

It's been a long day... Today we went over to the hospital for a 3.5 hour dose of Cytogam. It is one of the anti-infection drugs immuno-compromised folks like Leah need to take. It reminded me of dialysis for cancer patients - a room where people go to get infusions of whatever meds they need on an outpatient basis. Leah was loaded up with Benadryl the whole time so she was pretty sleepy.

Last night Leah didn't really get any rest. The drugs are keeping her from falling asleep (not the Benadryl - maybe the Prednisone...). We hope to get some better rest tonight.

Until next time,

seth...

I Eat Brunch Everyday

I am NOT a morning person. I wish I was... but I am not. Don't get me wrong... once I'm up, I'm up. I am not crabby or anything, but it just doesn't happen that often. Looking back on the last ten years I could probably count on my fingers how many sunrises I have seen.

The problem stems from the night before. For some reason we have been going to bed about 1:00 every night (morning.) It's a bad habit that we've developed and it is soooooo hard to break. I never feel tired till at least midnight. (Sometimes later.)

Our son Levi has adapted with ease to our schedule. He has no problem sleeping in. Sometimes he'll sleep till 11:00 or noon if I don't wake him up sooner. (Which I usually do.) I just go in his room, open up the blinds, and say "good morning!"

Needless to say we (I) need to practice this fruit of the spirit: SELF CONTROL. .... and hopefully I'll be able to see a lot more sunrises.