No News is Good News!

I haven't been posting lately because luckily, there is nothing to post!  E has been feeling great!  Somehow she has managed to stay healthy so far through this nasty flu season (knock on wood).

She is eating lots of new foods and gaining weight really well.  The one thing that is so different about feeding a CF baby is having to do the enzymes before she eats.  I remember giving my other girls a bite of whatever I was eating or throwing a few Puffs out to keep them quiet until I could get their food ready.  But with E, I can't just give her a random snack whenever I feel like it.  If she doesn't get the enzymes first, the food just goes right through her.  So I think that has slowed us down a little when it comes to trying new things.  I will get better at it, just takes some adjusting!

We go to Clinic on the 13th so I'll update again then!

Coughs, Colds and Christmas

Last week my two oldest girls started coughing, throwing up, and running fevers.  They both ended up with ear infections and nasty sounding coughs.  I did my best to keep E away from them so that she wouldn't get sick.  I even sent her to spend a few days with her grandparents but she caught it anyway.  Luckily it was just a cold, not the stomach ache and fever.  We started another round of Cephalexin (Keflex) that she will be on for the next 3 weeks and we've increased her CPT.

Even with all of the sickness in our house we had a great Christmas!

Clinic 12/12/12

E has been feeling great since we left the hospital.  This past month she has received her flu shot and her first dose of Synagis.  We're doing everything we can to keep her from getting sick these next few months!

Today was her 6 month clinic appointment.  We talked to them about the possibility of malabsorption over the last few days and decided to increase her enzyme dose.  She will now take 20,000 lipase units of Zenpep (or two 10k capsules) before every meal.  They also increased her dose of Axid to 1 1/2 mL, 2x/day.  This should help her stay on track with her weight gain.

Right now she weighs a little over 16 lbs which is great!

The dietician gave us a list of higher calorie baby foods that we can give her and also suggested adding rice cereal to her fruits and vegetables for extra calories.

We did the Pea Pod and a blood draw for her research study and both of those went really well.  This was a much better lab experience than the last one!

Now her appointments will be spread out to every 2 months so we don't go back again until February.

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!

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!

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!