Butterflies

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.

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!

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.  

Day Two

Dr. R came to see us today. He said E was looking good and reminded me that we would be here for a minimum of 14 days to finish out these antibiotics. He said she didnt need to wear the oxygen anymore and they took her off of IV fluids too.  I asked if her throat culture ever grew anything else and he said it didn't. Then I asked about the antibiotics and what exactly we are treating.  He told me that the only way to know what is going on in her lungs is to do a bronchoscopy, and it's not something we can do while she's on antibiotics because most likely it won't give an accurate result.

So the protocol for this type of situation is to go ahead and treat her for pseudomonas aeruginosa. Pseudomonas is the bacteria that causes the most problems for people with CF. Once they get it, it's hard to completely get rid of. So even though we don't know that's what it is, it's better to err on the side of caution and start those meds as soon as possible. The Bactrim is to treat Staph Aureus, which is something she has cultured a few times in the past and may be what is causing her cough as well.

Basically, we won't know anything new while we're here. We're hoping for her cough to be gone within two weeks and after that if she gets sick again soon we would look into doing the bronchoscopy.

I also mentioned that I didn't expect her to be hospitalized already at 5 months old and Dr R said he really didn't either. It's not something he sees all the time with infants but that doesn't necessarily mean this will keep happening a lot in the future.  We just have to wait and see.

First Day In The Hospital

I knew this was going to happen but I really wasn't expexting it so soon.  I was preparing myself for a hospital stay sometime before she turned 2...not at 5 months old! But I've read enough about CF to know that when she wasn't responding to any of the oral antibiotics, the next step would be a hospital stay. 

We came in this morning around 11:00 and got her into a room. After they got her hooked up to all the monitors, asked us a million questions, and had us sign some paperwork, the respiratory therapist came in to do a breathing treatment and some chest PT. E was not a fan of the breathing treatment at all! After she was finished with that, her oxygen level went down so they had to put a nasal cannula on her to give her oxygen. 

Then they took her to get a PICC line put in.  I know those things are painful to have put in and it has to be extremely scary when you're a baby and have no idea what is going on, but she took it like a champ! She cried of course, but not near as much as I thought she would. And at one point she was even smiling at the nurses. Sweet girl!

Next they did a chest X-ray to make sure the line was in the right place. Then awhile later we had to go do another chest X-ray for something else. Finally around 5:30, they hooked up her IV and started her antibiotics. The first one she got was Tobramycin which she will have once every 24 hours. A few hours later she got Bactrim (orally) and ceftazidime through IV. E was so exhausted after such an eventful day that she slept right through her respiratory therapy tonight!  

Through it all she has been her happy, smiley self! And apparently they are talking about her at the nurses station because every time a new nurse comes in they say they've heard about what a good baby she is! I'm so proud of my girl for being so brave today.  She's been through a lot but you would never know it by looking at her.

Caught her mid-cough...

...aaand now she's happy again!

Being Admitted Tomorrow

Her cough is still bad, she's wheezing quite a bit and breathing very rapidly so after talking with her CF team the decision is to admit her to the hospital for IV antibiotics.  They said to plan for a two week stay.  I'm sure I'll have lots of time to blog while we're stuck in the hospital so I'll keep everyone updated.

Still Coughing

After a week on Cephalexin, Emery still wasn't getting better.  She's been coughing all day and all night and she's VERY congested.  On Wednesday I called the clinic and they told me to go ahead and bring her in.  They swabbed her nose and throat and said they would let me know what they find out.  I got an email saying that her viral cultures were negative and that after 48 hours her bacterial cultures had only grown "normal flora."  The bacterial culture wasn't final yet so we'll know more on Monday.  

Dr. R went ahead and switched her to a different antibiotic since the other one wasn't doing anything for her.  Now she is taking Bactrim.

So that's where we are for now.

My main question was "why are we giving antibiotics if there isn't anything showing up on her cultures?"

Here is the answer I got:
"One reason is that the culture was obtained as a throat swab and most of the time that gives an adequate representation of what is in the lungs (without having to be more invasive).  However, there may be times when what grows in the throat may not be the same as what grows in the lungs."

"The other thing is that the lung disease of CF is progressive so people with CF typically don't have the luxury of letting things just "run its course."  With each flare-up of the lung disease there is the possibility of permanent changes to the lungs so we need to be as proactive as we can in keeping people with CF well and treating aggressive early"

It's Never "Just a Cold" With Her

Two weeks ago E started to get a cold.  Her big sisters had colds the week before and they were coughing a lot at night so I knew it was only a matter of time before she got it.  After a few days, E's coughing began. It wasn't anything I would worry about with any other baby, but with E the cough is our warning sign that a CF flare up could be coming.  If it doesn't go away in 5-7 days, that means it's not "just a cold."  On day 8 of her cough, I talked to the clinic nurse and she said that we'll need to start another round of antibiotics.  So she's back on Cephalexin for the next 3 weeks.

I'm starting to wonder if this will be the cycle we go through every month.

Luckily this time she doesn't seem to be bothered by it.  She's as happy as ever aside from the coughing.  I have no way to know how she really feels inside but I would like to think if it was bad she would let me know!

How is She Doing?

When people ask me how E is doing I never know what to say.  I don't know if they're asking just a general question or if they're asking for CF specifics.  I don't want to offer up too much information and make it all awkward but then again I don't want to blow them off if they really want to know about what's going on.  So I usually just say "great" and move on to another subject.

I need to get better about this.  I have absolutely no problem with people asking questions about her Cystic Fibrosis.  I love when people genuinely care about what's going on in her life and want to be involved.  But I also don't want that to be the only thing people know about her.  She's so much more than a disease.  She's a sweet, curious, happy little girl that will light up a room with her smile!  She's perfect.

Normal Flora

I got an email saying that E's last throat culture only grew "normal flora."  Apparently that means there was no abnormal bacteria found.

Great news!

They also told me that the blood the lab was able to get last week was sent off for vitamin levels and those were all normal as well.