Friday, April 23, 2010

4 hours and 40 minutes everyday

What would you do with an extra 4 hours and 40 minutes each day?

That's how long we are spending each day doing breathing treatments and CPT with the vest for Izzy. It is time that Izzy is stuck to a machine with her face covered by a mask. Normally, I put on one of her preschool shows like Sesame Street, Dora or Barney. Sometimes we do puzzles or read or dress her baby dolls but I can't help thinking about all that time just gone towards trying to keep her well.

A fight that we are going to lose. A fight I see other families losing everyday.

I wish we could spend those four hours at the zoo, or at the library. I wish I could spend those four hours pushing Izzy on the swing or catching her at the bottom of the slide. But I can't because I am fighting for more healthy time with Izzy. It's ironic really that to get more time with my daughter I have to sacrifice so much time now. So tonight when I get her up at midnight to do a treatment and at 6 AM when I wake her again to do another treatment, I will try to focus on the time these treatments will help us have in the future. Hopefully time for me to see her go to her first day of school, time where I can teach her to ride a bike, time where I can help her pick out an outfit for her first date, time where I encourage her to learn to drive a car, time in which I can watch her grow and meet her goals and not be stuck in a hospital bed fighting for her next breath.

We have a doctor's appointment tomorrow morning at 9 AM. Wish us high oxygen saturation numbers somewhere above 96% would be wonderful!

Hold your little ones close and never take your moments together for granted.

Wednesday, April 21, 2010

I never knew that I would stress about oxygen.

Today has been a rough day. Well, let's back up.

Izzy went to stay with her Noni and Papaw on Thursday night. They were going to keep her through Tuesday but Noni called me on Friday to let me know that Izzy had started to cough and had a runny nose.

Since it was just a dry cough and clear snot. Izzy stayed at Noni's but by Monday, Izzy was coughing a lot. So Noni brought her home early so we could see the doctor.

Izzy's visit with Dr. Kasper had some highs and some lows. First the high points, Izzy weighed 24 lbs 17 oz. This is up from about 23 lbs 7 oz on 03/20/2010. Izzy did not have any ear infections and she is not teething. Unfortunately, she is still coughing and running a low fever. The nurse came in to take Izzy's oxygen saturation and it was only 96%. Izzy has always ran at 99% or higher. Izzy is too little to start PFTs yet so oxygen saturation is a big clue for us on how her lungs are functioning and a 3% drop in less than a month is not something that we ever want to happen. If Izzy dropped below 94%, we would be discussing hospital stays. So luckily, she isn't that low. But we do need to get her mucus to thin out.

Here is the plan: We are increasing breathing treatments from twice a day to four times a day. That means we will be doing one at 6AM, 10AM, 6PM, and 10PM. We will run the meds completely through Izzy's mask before starting the vest. This means treatment times will go from 50 minutes to 70 minutes, because each med takes about 20 minutes to run through the nebulizer. Also, Izzy is going to take Augmentin for the next 10 days. We had a throat culture done and should hear back on it in the next week. If Izzy doesn't improve by 3 days from now, we will go in to check O2 levels again.

I hate days like this when CF just smacks me in the face.

But let's end on a good thought, Izzy told me to today that she is a very good mommy to her baby doll, Ame. She said, "Mommy, I'm a good mommy to my baby Ame. I am just like you." Which to me means she thinks I'm a good mommy!

Hope you all are having a good day!

Monday, April 19, 2010

Trying to be more active.

I haven't been doing a very good job of keeping everyone posted or blogging very often. I think once a year isn't really even considered blogging.

So once again, I'm going to try to be a better blogger. If you are just dying for Izzy pictures and updates, Facebook is the best way to keep up to date on Izzy. Search for me with my email:

Izzy is doing really well. I quit my job at SHB last January to stay home with her after she kept getting sick and having trouble gaining weight. Remember in September 2008 that she cultured PA, but since then has had clear cultures. She did get double ear infections twice. And her nose ran basically from November through March but overall her health has been good.

Izzy also got her CPT Vest in October 2009. It was $15,000 but the insurance company paid 80% and my mom, God bless her, picked up the 20% we owed for us. Izzy started out at 60% on the vest but by mid-February 2010, she was at 100%. Her lungs sound really clear. Of course, she is 2 now, so she argues with us about doing her breathing treatment everytime. Sometimes she cries and/or screams through the whole process but we don't let her take a day off because CF never takes a day off.

Izzy has struggled with her weight. At her January appointment, the clinic did discuss giving Izzy a g-tube. At this time, we have refused the g-tube treatment. This doesn't mean Izzy will never have a g-tube but we decided to try using some Boost supplements and giving Izzy time to adjust to solids before we consider the g-tube again. Izzy is still struggling to gain weight. She weighs about 23 lbs now. She is definitely on the lower end of the growth chart. Yet she remains around the 50th percentile for height. This makes buying clothes that are long enough and fit at the waist a rather hard task. If we feel that Izzy's weight is factoring into her culturing bacteria, we will definitely pursue a g-tube at that time.

I went back to work on March 1st, 2010, but just part time. I go in at noon. Izzy stays with a SAHM friend of mine. She loves staying there b/c my friend has 3 little boys. She calls the boys her brothers. They are 5,3, and 1. They get along really well. Izzy has really enjoyed her time with them. I miss being home with her and if she gets sick again, I will, of course, have to decide if I can continue working but for now it is working out okay for us.

We are ramping up for Izzy's Great Strides walk. Her team in KC is called, Tink's Team. We raised over $8,000 last year but are no where close for this year to that mark. So if you haven't donated yet, please click below and do so!

I have also posted Izzy's CF Montage video for this year. It has a lot of pictures from this year and is cute. Please watch it!