Monday, March 30, 2009
So much for being at home...
After Lauren went in today to get blood drawn, the doctor didn't like the results and called her in. Specifically, he didn't like what was going on with her kidneys, and he told her to immediately stop all the home IVs and head to the hospital. She got a room right away, which is good, but ARGH! Hospitalization again is really frustrating.
Saturday, March 28, 2009
Prayers Please
On Thursday afternoon. I could hardly cross the room without requiring oxygen, so I ended up in the emergency room YET AGAIN. Here's the good news: I get to do the IVs at home and not in the hospital. The bad news? It's a really rough schedule of meds. Brad is being so great about it even though I know he and I are going to end up a bit sleep deprived from this whole mess.
I've pretty much not left the bed or the couch since Thursday evening when we came home. Brad's insisting that I not lift a finger and save my energy. He's an incredible support. I know this must eat at him too. In fact, he was visibly upset on the drive to the ER. I just wanted to hug him and say "it's okay" but the truth is, in those moments it's not okay. It's scary as heck not being able to breathe. Even scarier when it hurts to breath and move at the same time.
I better go get some rest.
I've pretty much not left the bed or the couch since Thursday evening when we came home. Brad's insisting that I not lift a finger and save my energy. He's an incredible support. I know this must eat at him too. In fact, he was visibly upset on the drive to the ER. I just wanted to hug him and say "it's okay" but the truth is, in those moments it's not okay. It's scary as heck not being able to breathe. Even scarier when it hurts to breath and move at the same time.
I better go get some rest.
Sunday, March 22, 2009
Lauren's Home (a report from Brad)
They let Lauren come home today! The doctors have been treating her
for so long (nearly six weeks of constant IV therapy), and they're
frustrated as well, so they've just decided to let her come home and
rest with no more IVs. If she's still doing poorly after a few weeks
at home they might admit her again, but at least she's out of the
hospital for a bit.
She also did her home lung-function tester (less accurate than the big
hospital equipment, of course, but still useful) after she got home,
and it appears that she's gotten better since the last hospital test
on Friday. So, as confusing as this disease is, it looks like she's on
the way back up. Today's measurement shows her about halfway between
Friday's results and where we'd like her to be.
Thanks for all your prayers!
With thanks to God and hope for His continued mercy,
Brad
for so long (nearly six weeks of constant IV therapy), and they're
frustrated as well, so they've just decided to let her come home and
rest with no more IVs. If she's still doing poorly after a few weeks
at home they might admit her again, but at least she's out of the
hospital for a bit.
She also did her home lung-function tester (less accurate than the big
hospital equipment, of course, but still useful) after she got home,
and it appears that she's gotten better since the last hospital test
on Friday. So, as confusing as this disease is, it looks like she's on
the way back up. Today's measurement shows her about halfway between
Friday's results and where we'd like her to be.
Thanks for all your prayers!
With thanks to God and hope for His continued mercy,
Brad
Saturday, March 21, 2009
Slow Going
It's been 19 days now that I've been in the hospital. Things aren't progressing as easily or quickly as we'd like. Today I was back on oxygen for a bit. Also, the results of yesterday's PFTs was quite disappointing. I got the exact same volume I had on Tuesday--a mere 1.56 liters.
Today my CF doc finally came to see me. He's a bit baffled by this whole thing too. He's going to discontinue some of the IVs. We're slowing tapering the prednisone. No matter what we do though, I'm just not getting better fast enough for my taste.
This stay has been hard. It's really eating at us and making us feel quite drained. We covet your prayers for healing and peace of mind. All I really want to do at this point is go home. I've been on IVs constantly since February 9th and my body has decided it's done responding. I hate this. We hate this. We hate it a lot.
Today my CF doc finally came to see me. He's a bit baffled by this whole thing too. He's going to discontinue some of the IVs. We're slowing tapering the prednisone. No matter what we do though, I'm just not getting better fast enough for my taste.
This stay has been hard. It's really eating at us and making us feel quite drained. We covet your prayers for healing and peace of mind. All I really want to do at this point is go home. I've been on IVs constantly since February 9th and my body has decided it's done responding. I hate this. We hate this. We hate it a lot.
Saturday, March 14, 2009
Peek-A-Boo ICU
Yesterday was a rough day followed by an even rougher night. I started getting really short of breath around 7, so I had the nurse page respiratory. By the time the RT got to my room my chest hurt like crazy and I was starting to hyperventilate. I just couldn't get enough air in. I'll spare you the majority of the scary details but the ultimate result was that I ended up spending the night in the ICU hooked up to BiPAP.
I've never had to be on BiPAP before and it was a bit scary. That mask they put over your face is loud and uncomfortable. What made things worse was that I wasn't wearing my glasses or my hearing aids, so everything that was going on around me was blurry and muffled. I was so glad Brad was there to hold my hand because I was starting to freak out.
Today I'm back in a regular room but I'm hooked up to 4liters of oxygen and 5 intravenous antibiotics. My sats are better at that rate, but I still think I have a long way to go before they'll let me out of here. I'm pretty exhausted so I plan on hibernating for much of the remainder of the weekend. Thanks for keeping us in your prayers. We know they are not without avail. God has been so faithful to us through all this. We don't understand why so many dramatic things are happening this time, but we know that He is in charge of all the details--large and small.
Friday, March 13, 2009
Rhymes with Spit
I woke up this morning thinking today was going to be good. I had some visitors lined up, my mom was planning to stop by, and all was well.
All wasn't well. I had my PFTs and my FEV1 was lower than when I came in. A lot lower. I'm bitterly disappointed and can't understand what happened. I hope that things turn around quickly quite soon. I have a feeling this is going to be a lengthy stay here at the hospital.
Spit. Spit on a stick.
To be continued...
All wasn't well. I had my PFTs and my FEV1 was lower than when I came in. A lot lower. I'm bitterly disappointed and can't understand what happened. I hope that things turn around quickly quite soon. I have a feeling this is going to be a lengthy stay here at the hospital.
Spit. Spit on a stick.
To be continued...
Thursday, March 12, 2009
Another Little Ditty
Today I've been bored enough to be creative.
I wrote some CF lyrics to the tune of
"The Pirates Who Don't Do Anything"
"The Patient Who Will Do Anything"
I'm the patient who will do anythihng
except stay at home and lie around
and if you ask me to do aanything
I'll just tell you
"I can do anything!"
"I can do anything!"
Well I'll give aa sputum sample
and I'll put it in that small cup
and then take it to the lab
where they'll analyze it all;
and I'll let you do some blood work
and check my O2 saturations
as I walk for 6 minutes in the hall.
I'm the Patient who does everything
Except stay at home and lie around
and if you ask me to do anything
I'll just tell you
"I will do anything"
I inhale my medications
and I follow doctor's orders
and I excercise my lungs at every chance I get
'cause I know that in the future
It will be getting harder
'But I'm glad I'm not hitting that point yet.
When I end up with pneumonia
or am coughing up some red blood
or can hardly sleep at night
because I'm coughing oh so hard;
then I call for an appointment
at my local CF clinic
'cause I know it is my health that they guard.
I'm the patient who will do anything
except stay at home and lie around;
and if you ask me to do anything
I'll just tell you
"I can do anything!"
When they put me on those steroids
I really seem to puff up
and my tummy gets real big
like a great big rubber ball
But I know that these drugs help me
and I'll breathe so much better
so that I can go to Boston in the Fall.
I really seem to puff up
and my tummy gets real big
like a great big rubber ball
But I know that these drugs help me
and I'll breathe so much better
so that I can go to Boston in the Fall.
Tuesday, March 10, 2009
Been In for a Week
I haven't blogged in awhile since I've been hospitalized yet again. Cystic fibrosis really sucks in my opinion. Fortunately I have good doctors who are working hard to get me back into tip-top condition.
I ended up here a week ago. I had extreme shortness of breath and my oxygen saturation was pretty low. I ended up having to call an ambulance for myself. Joy. Ambulance rides are not fun. You have to balance on this crazy, skinny gurney and watch the world go by through the back window of claustrophibia-inducing vehicle. Yuck.
When we got to the hospital they started me on IV antibiotics--the usual stuff. Actually, this time they hit me with everything they've got it seems. I'm on 4 different antibiotics. 3 of the intravenous and one of them oral. The bugs that I'm growing this time are highly resistant to them, so we're hoping and praying that this heavy-duty combination of drugs will do the trick to wipe out the infection. The official diagnosis is double pneumonia. Gunky on both sides. I feel like I'm breathing through a coffee stirrer and the stuff I'm coughing up is about the consistency of watery mud. It may as well be mud for all I care.
I'm pretty low on energy, but improving a bit at a time. I'm still on oxygen, but my lung function tests from today showed an improvement from Friday. That's good news at least. I'm not sure how long I'll be here, but I'll try to get better at updating. I just haven't had a chance before now.
Over and out,
Lauren
I ended up here a week ago. I had extreme shortness of breath and my oxygen saturation was pretty low. I ended up having to call an ambulance for myself. Joy. Ambulance rides are not fun. You have to balance on this crazy, skinny gurney and watch the world go by through the back window of claustrophibia-inducing vehicle. Yuck.
When we got to the hospital they started me on IV antibiotics--the usual stuff. Actually, this time they hit me with everything they've got it seems. I'm on 4 different antibiotics. 3 of the intravenous and one of them oral. The bugs that I'm growing this time are highly resistant to them, so we're hoping and praying that this heavy-duty combination of drugs will do the trick to wipe out the infection. The official diagnosis is double pneumonia. Gunky on both sides. I feel like I'm breathing through a coffee stirrer and the stuff I'm coughing up is about the consistency of watery mud. It may as well be mud for all I care.
I'm pretty low on energy, but improving a bit at a time. I'm still on oxygen, but my lung function tests from today showed an improvement from Friday. That's good news at least. I'm not sure how long I'll be here, but I'll try to get better at updating. I just haven't had a chance before now.
Over and out,
Lauren
