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.

Clinic 9/26/12

Between regular pediatrician visits and the CF Clinic appointments I feel like we're taking her to the doctor every week!  But I would rather be going in for check ups than to be going in because she's sick so I won't complain!

Everything looked good as far as her weight gain goes.  She weighed 13 lbs 12 oz today.  She's taking 6 oz bottles now and we're still adding an extra scoop of formula to increase the calories.  The dietician told us we can start giving her rice cereal now too if we want.

We're almost finished with the antibiotic and she seems to be feeling pretty well lately.  We talked about getting her a flu shot in November since she'll be over 6 months old and we also talked about getting Synagis shots to help keep her from getting RSV.  Dr. R said that while it is important for her to get the Synagis shots, it is even more important for her to be protected from the flu.  I didn't realize how bad it would be if she got the flu but apparently it isn't pretty.  I had already planned on being pretty cautious this winter and making sure she isn't around anyone who is sick but this made me even more nervous!  I would love to keep her in a bubble and never leave the house but I know we can't do that.  So I guess we'll just make sure we all wash our hands 100 times a day and hopefully that will be enough to keep us healthy!

Now for the sad part...

She has to get annual lab work and a chest x-ray so they told us we were going to do that at this appointment.  We went down to the lab and laid her on the table next to SEVEN empty tubes that they were supposed to fill with blood. SEVEN!  Two different nurses and several half-successful attempts later we decided to call it quits and finish the lab work another time.  She was screaming the entire time and it felt like we were torturing her.  Ryan and I couldn't handle it anymore.  They got 5 out of the 7 so we have to try again next month...this momma is not looking forward to it!

4 Months Old

Baby girl turned 4 months old this week.  She is changing so much and really starting to recognize people now.  Every time someone comes up and talks to her she gets so excited and has the biggest smile on her face!

She's figuring out what to do with her hands.  She'll look at them, put them in her mouth, look at them again, turn them back and forth...it's fun to watch her discover new things.  

She soothes herself and puts herself to sleep by sucking her thumb.  It's something she's done since the day she was born.  I tried and tried to get her to take a pacifier but she always went back to her thumb!

Whatever works...    

We spend all of our time together either at work, dropping her big sisters off at school, picking her big sisters up from school, going to the grocery store, running other errands, and she never complains.  She's always happy!

Her check up today was great!

Height: 24 3/4 in.

Weight: 13 lbs 3 oz

First Round of Antibiotics

Well her list of meds has officially become too much for me to keep track of in my head!  Time to get organized!

On 8/31 E started coughing in the mornings and a little throughout the day.  She also had a pretty stuffy nose so I waited it out for 7 days to see if it went away and when it didn't I called the Clinic to talk to the nurse about what we should do.  It wasn't only the cough I was worried about but I could tell she just wasn't feeling well.  She was arching her back and crying quite a bit which for E is not normal.  She never cries!  The nurse decided to increase her dose of antacid and to go ahead and start her on an antibiotic that she will take for 3 weeks.  The antibiotic will knock out any bacteria that is lingering around in her lungs while she's sick.

So now her daily medicines are:

Cephalexin (antibiotic) 3ml 3x/day

Nizatidine (antacid) 1ml 2x/day

AquADEK (vitamins) 1ml 1x/day

1 Zenpep 10k capsule with each bottle

Chest PT 20 min 2x/day

While she wasn't feeling well I carried her around in the sling quite a bit.  I didn't realize it before this but she hasn't been much of a snuggler.  Usually she just lays right down and goes to sleep or plays happily in her bouncer.  But while she was sick she was happiest when she was laying up against me.  I loved having her fall asleep in my arms!

She's been on the antibiotic for a week now and she seems to be feeling better. I think the antacid adjustment helped too.  She's back to her happy self again and getting lots of work done with mommy!

Clinic 8/29/12

We met with E's CF team again this month.  She is doing great and growing like she should be, weighing 12 1/2 lbs now.  No changes on her enzymes or meds...still taking Axid twice a day and 1 Zenpep 10k capsule before meals.  Her last 3 throat swabs have grown staphylococcus aureus, which is one of the most common bacteria found in the lungs of CF patients.  It's not something that needs to be treated, though.  They do the throat swabs to check for pseudomonas aeruginosa because that is the one that causes the most problems.  Luckily we don't have to worry about that one yet!

We signed all of the consent forms for E to participate in a clinical trial called BONUS: Baby Observational & Nutritional Study.  It is a research study conducted by the Cystic Fibrosis Foundation where they look at factors that may contribute to poor growth in babies with CF.  Everything will be done at our regular clinic visits and it is pretty much the same stuff we normally do there anyway.  But instead of weighing her once, for example, they weigh her twice: once for her clinic records and then once for her research records.  Same with her height, pulse ox, throat swab, etc.  They also put her in this pea pod that gives a more accurate measurement of her body composition.  She was so cute in there just looking around and smiling at us through the glass!

When they first mentioned this research opportunity to us, Ryan and I were both very much in favor of doing whatever we could do to help.  I hope that the results of this study will help someone else's baby one day just like the results of other research studies have helped us keep E healthy so far.