Sunday, November 11, 2012

Home Sweet Home

We're home!!

Dr. R said that we could leave on Sunday instead of Monday if it would be easier for us so of course we said yes.  She is feeling great, no more coughing, and I think we all would like to sleep in our own beds again.  We made a Clinic appointment for mid December so I'm hoping we don't have any issues before then.

The doctor that discharged us today gave us very strict instructions about how to keep her healthy this winter.  She told us to wash our hands ALL THE TIME!  Keep her away from sick people (obviously).  And if someone in the house is sick they should probably go somewhere else for a few days, or send E somewhere else for a few days.  Not sure how that one is going to work out but we'll cross that bridge when we get there.  She also talked about all the holiday parties we will have coming up and said our best bet is to skip them altogether.  I'm a little confused because a few months ago they were telling us not to put her in a bubble, but this is sounding a little bubblish to me.  I guess a hospitalization at 5 months old will change things, though.

Anyway, we're home and so happy to go back to our normal routine.  Thank you to all of our friends and family who have helped us out over the last two weeks.  I don't know how we would have made it through all of this without you!

Wednesday, November 7, 2012

Don't Get Your Hopes Up

Why do people even say that?  Don't they know that the very next thing you will do is get your hopes up?  It's like saying "don't look down!"  Of course I'm going to look down!

On Monday they tested her Tobra trough level to make sure she didn't have too much of the medicine in her system.  High levels of Tobramycin can be toxic so it is important to monitor it closely.  Her level on Monday was 1.2 which is within the safe zone (under 2.0), but higher than Dr. R expected.  So he said we would test again on Wednesday.  He said that if the level is higher than 1.2 we would probably stop treatment and let her go home...but "don't get your hopes up!"

Now, obviously I don't want my baby to have toxic levels of antibiotic in her system but was there a small part of me that was hoping for a 1.3 so that we could finally get out of this place and go home?  Of course!  But when they checked it today her level was down to 0.8.  So.......we're still here if anyone needs us!

Tuesday, November 6, 2012


We went for a walk around the hospital this morning.  They have an area where you can look up at a bunch of giant colorful butterflies!

E thought they were so fun.  She was talking and talking and talking.  I'm not sure if she was talking to the butterflies or if she was talking to me, but either way I'm just glad she found something to get excited about.

We walked around some more...visited both of the gift shops...I bought a shirt and a diet coke.  I've decided they need more gift shops in this place.

Here are the butterflies from a different angle.
Yes.  I'm bored.

Monday, November 5, 2012

Things I've Learned So Far

1. Never Assume Anything - When we first got here, the nurse was asking me a bunch of questions and getting her medical history, list of medications, etc.  Then he asked if she had any chronic conditions...I was confused and assumed he meant anything OTHER than CF.  But luckily Ryan spoke up and mentioned the CF because he didn't know that part.  I learned pretty quickly that not everyone knows what's going on with her and I need to be very specific about everything!

2. Speak Up - This is along the same lines as not assuming things, but if something looks off or you think they missed something, don't be afraid to speak up.  There have been a few times when I've had to remind them to get the results of her labs before giving another dose of medicine.  

3. Get Out Every Once In Awhile - Two weeks is way too long to be stuck in a room.  Sometimes we'll go for a walk around the hospital or out to get some fresh air.  I think E likes the change of scenery.  If she was a little older we would need to get out a lot more but right now she's pretty content most of the time.

4. I'm Not Doing Her CPT Hard Enough - I really feel like I put a lot of muscle into it but after seeing them do her CPT here I'm pretty sure I could do better!

5. Nurses are Angels - I really believe it takes a special person to be a nurse.  We have had so many wonderful nurses this past week and they are always so sweet to E.  They have made this whole situation easier on us, making sure we have everything we need.  I'm pretty sure if I was at work for 12 hours a day I would not be in as good of a mood as they are!

Friday, November 2, 2012

Feeling Much Better

Every day is pretty much the same now.  We wake up to a shift change around 7am.  The new nurse comes in and gets the rundown on E's history.  Then Nana comes up and brings coffee and lets me shower while she plays with E.  Ceftazadime, Bactrim and Zantac around 9am...a breathing treatment and CPT...some tummy time or snuggle time...someone usually brings lunch...she naps...she eats...more meds...more respiratory therapy...dinner and then we go to bed and do it all over again the next day!  

All of the visitors have really helped break up the day and keep us sane!  A person could go crazy alone in this little room all day long for so many days in a row.

Daddy stayed with E last night so I could go home and spend some time with the other girls.  It was nice to have a day to hang out with them.  We slept in, went to the park, came up to visit their sister and ran some errands.  Then tomorrow he will get to spend some time with them doing one of their very  favorite things: watching college football.  

E has been doing really well.  I hardly hear her cough anymore and they say her lungs are sounding great.  They expected that by day 3 she would be feeling much better and it seems to have worked out that way.  Now we just hang out and pass the time while she finishes out her meds.