~Crazy For Natalie~
Finding a CURE for Cystic Fibrosis

Updates

view:  full / summary

Another cough?!?!

Posted by Jen on September 30, 2013 at 4:15 PM Comments comments (3)

Well here we go again, another cough. I do have to say it was great to have my daughter cough free for 7 days!!! But we will be starting cipro again to help make this "bug" go away. I had to pick Natalie up from school yesterday for her ears. She had so much mucus in her nose that it gave her a double ear infection. The joy of her sinuses!!! Fingers crossed this goes away quickly so I can have my cough free Natalie back!

Best ENT appointment in months

Posted by Jen on September 26, 2013 at 4:15 PM Comments comments (0)

Today Natalie met with Dr. Schroeder and he was thrilled to see the inside of her nose with his rubber scope! Natalie's polyp deflated, which is amazing for her. We started steroids in her nasal flush and it seems to be working! We are thrilled at the results and do not have to see him again in 3 months!! That's a long time for us:)

PICC line is OUT!!!!

Posted by Jen on September 15, 2013 at 4:25 PM Comments comments (0)

Today was a great day. Natalie had her PICC line removed. I have to say having the line in for 10 days is so much better then 14. Natalie is thrilled to go back to all of her normal activities, like gymnastics, soccer, volleyball and gym at school. Natalie didn't even move when they pulled the line out. She always hates having the bandage removed since it hurts and pulls out her arm hairs, but she took it like a champ today!

Visit from her siblings!

Posted by Jen on September 7, 2013 at 4:45 PM Comments comments (0)

Natalie was so excited to see Ryan and Aubrey today!!!! Her Grandma and Grandpa Smith brought them over for a quick "hello." They are not allowed in Natalie's room until she is over 12 yrs old, so this is very hard on all 3 of them. Ryan and Aubrey put on the gowns and gave Natalie a quick hug and kiss. They exchanged pictures/cards and she showed them her room from the doorway. Once they talked for a few minutes, Joe and I took Ryan and Aubrey for dinner and shopping at the Water Tower. Of c...

Read Full Post »

Day 2

Posted by Jen on September 6, 2013 at 4:40 PM Comments comments (0)

Today we have a slow day. Natalie only gets to leave the hospital room to go for tests or exercise lab, so lucky for her she gets to go exercise today. She loves this part because she gets to bounce all over the room and not get in trouble! She also got to paint her hand on the wall in the lab. Such a lucky lady!!! That was about it for today. They are continuing to check her blood levels for the IV meds, she is getting lung treatments 4 times a day and hypertonic saline 2 times. Hopefully a...

Read Full Post »

Hospital Time

Posted by Jen on September 5, 2013 at 4:25 PM Comments comments (0)

Well today was the day we knew was coming. I really thought Natalie was in the clear and going to dodge the hospital for a little longer but that is not the case. Her cough has gotten worse so we need to get her back on the road to being cough free. Natalie had her PICC line put in WITHOUTany sedation, they just numbed it for a second and she was good to go. I have to say that is pretty amazing, but she has been doing this awhile now so it is easy for her. Plus Amanda, our child life speciali...

Read Full Post »

Steroids-Help Us

Posted by Jen on January 9, 2013 at 10:25 PM Comments comments (0)

Well Natalie's cough didn't go away so I put a call into her nurse to let her know. If she coughs for 3+ days they have to be notified. So after Stacy and I talked we decided Natalie needed to go on a high dose of steroids to knock this cough out. The problem with this is poor Natalie isn't herself when she is on the steroids. They make her very emotional and hungry. I hope these next 5 days fo fast for her!

Happy New Year!

Posted by Jen on January 1, 2013 at 10:20 PM Comments comments (0)

Happy 2013! I was hoping to ring in the New Year with all 5 of us healthy, but sadly we all caught a respiratory virus. Natalie was the last one to get it, we tried so hard to keep it away from her but she started coughing today. She is coughing for hours, so we just have to give her treatments throughout the day along with her inhalers and then listen to her cough because we have no other way of helping her. This is when a parent feels helpless. She was crying that her throat ...

Read Full Post »

Nasal Debridement

Posted by Jen on November 5, 2012 at 9:20 PM Comments comments (0)

This morning Natalie had her nasal debridement procedure. Luckily this is quick so she only needs a mask to go to sleep, no needles or IV's!!! Dr. Schroeder took her back and they were done in 20 minutes. He came out to the waiting room and told me this was 100% necessary. He said they never would have been able to get all of the snot out in an office visit while she was awake. He said there was a lot more in there then he thought. He thinks some of it is from her past surgery ...

Read Full Post »

ENT appt

Posted by Jen on November 1, 2012 at 10:35 PM Comments comments (0)

Every 2 weeks after nasal surgery we have to go see Dr. Schroeder for about 2 months. As soon as we get there Natalie starts freaking out about the vacuum machine and camera. She had developed anxiety when it comes to the ENT! Not a good thing so we are trying to find a way to relax her!

Once we walk in the room they give her a nasal spray that will numb her nose. She doesn't like this either. Pretty...

Read Full Post »

Allergy Testing- negative

Posted by Jen on October 29, 2012 at 10:45 PM Comments comments (0)

First off, happy birthday Auntie Jillian! We hope you had a wonderful 30th birthday :-)

Secondly today was the day we have been waiting 3 months for!!!! Our allergy testing!!!! We woke up nice and early to get to Fullerton by 8:15am. Shocking traffic wasn't tooo bad for us. They took us right away and then Natalie played on her my i-pod while I answered 5 million questions about her health, our house etc... Then it was ti...

Read Full Post »

PICC line removed

Posted by Jen on October 12, 2012 at 10:45 PM Comments comments (0)

Today after school we had the home health care nurse come to the house to remove Natalie’s PICC line. They had to draw blood to make sure everything went well. After that they removed the line. It was 22 cm long. Ryan loved watching this. He wouldn’t leave her side. The great this is she was able to play in her soccer game this evening. She was so happy to be doing everything she loves again!!!

Read Full Post »

Last day of IV meds!

Posted by Jen on October 11, 2012 at 10:35 PM Comments comments (0)

Today is day 14 of Natalie’s PICC line. Which means we are almost done!!! I talked to the doctor at Children’s today and they said she had enough of the Tobra so it is fine to stop since she was experiencing side effects. All we have to do is our last 3 doses for today and then tomorrow we can have the PICC line removed! Phew!!

Why are there bells ringing???

Posted by Jen on October 10, 2012 at 10:35 PM Comments comments (0)

Until tonight Natalie was doing great with her IV meds. Granted we have had to plan life around the doses, but we have been very fortunate to be at home. Natalie has to do her steroid nasal flush before bed, which is horrible. She cries every time we do it saying it burns and tastes awful, I am going to call the doctor tomorrow to take her off of the medicine because she has never acted this way with medicine before. This time once she calmed down for 10 minutes she started crying and rollin...

Read Full Post »

Time to go!!!

Posted by Jen on October 4, 2012 at 10:25 PM Comments comments (0)

The day is finally here for us to LEAVE!!! We are meeting the home health care team at our house with the IV meds and I will be her “nurse” for the next 7 days. I will give Natalie 2 different IV’s every 8 hrs. She will be able to go to school tomorrow, but she will not be able to play at recess or gym class.

We will have our follow up appointment in November make sure Natalie’s cough is gone for good. We will do a PFT and we might try the hyper-tonic saline ag...

Read Full Post »

Day 6

Posted by Jen on October 3, 2012 at 6:55 PM Comments comments (0)

This morning Natalie woke up around 7:30 which is late when you stay in the hospital. Normally people are walk in and out of your room starting at 6:30. Don’t get me wrong, we had a team in here that early, she was just so tired she slept through all the commotion.

At rounds today we talked about Natalie’s release and they are trying for tomorrow. We just need one more blood draw at 4:30 and if that goes well we will be home soon!!! It looks like the pseudomonas was in the ...

Read Full Post »

Surgery Day

Posted by Jen on October 2, 2012 at 11:20 AM Comments comments (0)

Today is the day we hope will clear Natalie’s body and give us some answers involving her cough.

Her 2 procedures were scheduled for 9:45, around 9:15 we changed into a hospital gown, took off her jewelry and then I gave her a good luck gift, a Barbie gymnast she has been asking for. Around 9:30 they came to our room and brought us down to the PACU. We had to wait for a while because the ENT had a procedure before us and it was running long. Natalie was getting a little stir craz...

Read Full Post »

Day 4

Posted by Jen on October 2, 2012 at 1:00 AM Comments comments (0)

Today is the day before surgery so we are getting all the tests done for the procedure.

Auntie Jill came for a nice morning visit. We built one of the puzzles she brought her and then it was time to go for a PFT. She was lucky enough to go with Natalie for her PFT. I think Natalie had a lot of energy and was so excited to be out of her room for the first time since Friday. So she was goofy and rushed through her PFT and only got a 106%. Don't get me wrong, that is still a good number, ...

Read Full Post »

Day 3- who's counting?!?!?!

Posted by Jen on September 30, 2012 at 12:05 PM Comments comments (0)

Luckily we had many visitors today to make the day to go by as fast as possible.

We started with Grandma ans Grandpa Smith bringing Ryan and Aubrey. This visit started off rocky but it ended up being a fun messy time for them. We went to the gift shop and bought play doh and mars mud and a police car. We went to the cafeteria and played with play doh and mars mud for over 30 minutes. Ryan and Aubrey loved making a mess with the Play doh, they also got to cut the play doh with pla...

Read Full Post »

Day 2

Posted by Jen on September 29, 2012 at 11:55 AM Comments comments (0)

We are now on Day 2 of our hospital stay. Today is going to be a longer day for Natalie because she is an isolation patient. That means that she is NOT allowed to leave her room!! This is hard for a 5 1/2 year old. Luckily I went through my art closet at home before we left and grabbed a ton of stuff to keep her amused.

Ryan and Natalie came to see the hospital for the first time today. Dad, Grandma and Grandpa Smith brought them to the 21st floor. It was great for Ryan to see her and ...

Read Full Post »

Rss_feed

Upcoming Events

No upcoming events

Recent Videos

2779 views - 1 comment
2196 views - 0 comments

Contact Us

If you have any questions please email us at [email protected]