~Crazy For Natalie~
Finding a CURE for Cystic Fibrosis

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Another cough?!?!

Posted by Jen on September 30, 2013 at 4:15 PM Comments comments (0)

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 course they bought something for Natalie too. It is great to see how close the 3 kids are, and how much they support and miss each other through tough times like this!!

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 after all of this she will get better!

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 specialist, is with her and Natalie loves her so that makes it nice for a mom to know that someone special is watching over her as they do the procedure.

We didnt get a room with a view this time :( They were all full. Natalie and I will have to make the most of this stay by entertaining each other.

She had a chest xray taken and also had a PFT. Her PFT was 119% that is amazing considering she is coughing.

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 hurt from coughing so hard, and I wanted so bad to be able to help her, but there isn't anything I can do. With CF this cough has to take its course. Everything in her lungs is thicker than slime so it is very hard to cough it up. So she can literally cough for 9 hrs and nothing. She has been on Cipro (an anitbiotic for 4 weeks, so we will just finish her dose and then she what we have to do next. Fingers crossed this leaves her soon!!

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 and since he removed so much, and loosened everything up that it crusted and made more boogers.

We have to do the nasal fluch 2 times a day and flonase twice a day. He said Natalie has a bad case of CF in her sinuses. I have seen it myself when he uses the camera. It is SO thick that it is hard to suction. At least this is her sinuses and not her lungs! Even though he said that the snot is thick just like the mucus in her lungs and it's crazy to see and know that. It has been another CF reality check for me!

So after I talked with Dr. Schroeder I went back to see Natalie. Boy was she happy to see me. She was still "out of it" so she hit me, bit me, punched me in the face and wiped her spit on me! The nurse asked if she had night terrors and I said yes! (Those are the worst for those of you that don't have a child with them. They wake up randomly in the night still asleep but cry and scream with their eyes shut and it can take 20 minutes to calm them down.) She said that children with night terrors wake up mean and and angry just like a night terror. It totally made sense. They said she should out grow this between 8-9. Hopefully we will not have to be sedated before then!!! Fingers crossed all of this helps her sinuses!!!

Once she calmed down we were free to go and Natalie was back to her normal self before we got home! So with that being said it was time to go to the mall to celebrate their day off of school and buy some build a bear clothes for Ryan, Natalie and Aubrey!

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 much everything the dr does, she hates except for the nasal flush!

Once we pinned her down, Dr. Schroeder stuck the camera in her nose to see how things looked. I have to say it is kind of gross! She has snot up there and he tries to get it but he can't since she has "CF snot". That just means it is SUPER thick. So now he tried the vacuum and again I am watching and the suction is sitting on it but the snot is NOT moving. I know this is gross, but this is what we go through :-) After he tries to get as much out as he can, we sit and talk. He was trying to find a way to help her and not cause too much pain. He then through out there about sedating her and doing this same procedure. He said he can spend 10 minutes and get everything out. I said sure! I could tell he was surprised I responded so quick. Then he really started to think about that option. I told him I saw all the snot still in there that we couldn't get today and I don't want the polyps to grow back. So I am for anything he would suggest to help Natalie. So after he typed up her paperwork we decided Monday was a good day to do this procedure, a nasal debridement!

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 time for the testing. They wrote 19 little numbers on her arm. And then put a drop off a solution next to each number. Once all 19 are on there they poke each dot into her skin with a soft needle ( it didn't hurt, they poked me once they were done with her so I could know what she went through!) After you have to sit without touching your arm for 15 minutes. The #1 is histamine so everyone should react to that. You need a 3mm red mark in order to be an accurate test. Of course after 15 minutes, Natalie's only grew 2mm. Not one other solution turned red with a mark. They said it wasn't 100% accurate but they think she is negative to everything because she didn't get a thing from any other number.

Go figure, we were kind of hoping she was allergic to something outside. I mean it makes sense. Every July she coughs and it gets worse in fall and then she is hospitalized in October. But no, she was negative to trees, grass, and molds! GRRRRRR!!!!

However they did notice her numbers for the strep vacine were low. So they gave her the vacine for pneumonia. We have to go for bloodwork in 4-6 weeks to make she her strep numbers go up and then to test her bloodwork for allergies since the other wasn't accurate.

So we will see what the results will be in 4-6 weeks.

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!!!

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 rolling in her bed asking why she heard bells in her head. I immediately gave her ear drops, and motrin. I knew this was a good sign, because before we came home from the hospital, the home health care pharmacist went over the side effects to keep an eye out for and one of them was ringing in the ears. So once I calmed Natalie down I got on the phone with the pharmacist. They said she needs to stop the medicine until we talk to Children’s in the morning. So for now, Natalie is still hearing bells, but hopefully they will stop soon!!

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 again.

As for now we are home free!!!

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 mucus plugs, but we have to wait for the lab to final which will take 7 days. The IV meds she is on will treat that too so we don’t have to adjust her medications.

We also talked about Natalie trying the hypertonic saline again when she is back to her baseline. We did this last year but her PFT levels dropped so didn’t continue treatment.

Overall Natalie is doing well and we will continue to fight this disease and not let it win.

At 4:30 our nurse walked in to draw Natalie’s blood work for the last check of her IV dose. And shortly after, she came back and told me the pharmacist was happy with the levels!!! So we can go home tomorrow as long as nothing changes by rounds tomorrow morning!! YIPPEE!!

Grandma and Grandpa Smith sent Natalie a My Little Pony gift with her dad since they are at home with Ryan and Aubrey. Natalie also received a get well gift from Flying High!!! It was so thoughtful of them to think of her!!

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 crazy waiting for them. We luckily had a great nurse and to relax Natalie she made small talk and then decided that her dog stuffed animal that she brought down for surgery needed an ID bracelet like her. So Pancho got a nice red bracelet just like Natalie.

Afterwards both the ENT and pulmonologist came in and spoke with me about their procedures. And finally at 10:35 Natalie went away with the anesthesiologist.

Around 11:50 the pulmonologist, Dr. Griffiths, came out and spoke with me about Natalie’s bronchoscopy. She said they went in there and did a lavage, that is when they insert saline solution in her lungs to loosen up the mucus and then suck it back up and send all the mucus for testing. She said there was more mucus in there then she expected but it wasn’t bad. I was happy to hear that those mucus plugs were removed and now she didn’t have to worry about them. We will have prelim results in 24 hours and then they are final after 7 days.

Now it was time to wait for the ENT to be finished and to see Natalie. He said he wouldn’t be as long as last time since he was hoping she didn’t have as much gook inside her to remove. So we were looking for about 1 ½ hrs. So we waited as calmly as we could, I ran to go get lunch since it was taking longer than I thought and I was starving. Joe got us Starbucks and then at 2pm they came and found us to go back to her recovery room.

My poor Natalie was crying. She just wanted something to drink to moisten her mouth because it was do dry. But we had to wait for orders to go in the computer for clear liquids. It felt like eternity for those orders to come through, but it was probably 10 minutes, and then once we got her mouth wet she got a little fussy. I think she wanted to sleep but couldn’t and she wanted her nose to stop hurting and she wanted her mouth to stop hurting so her oxygen level dropped. They said this happen after the lavage, the medicine they put her on and then with her reaction it was bound to happen. So they gave her oxygen for 5-10 minutes in which she fell asleep and relaxed and then she was fine and held her own oxygen again.

We finally made it back to our room around 3:30. She was still sleeping which is great because she was exhausted. She had to have her IV meds when we got back because we already missed one dose this morning. Natalie slept for about 3 hrs. Her Grandma Martinez came and brought is dinner and a sweet snack for Natalie. She also received a La De Da doll from her grandma for having surgery. She played with the dog all night that came with the doll. I think because it looked like her real dog Charlie at home that she misses.

Around 8pm Natalie bounced back to her “normal” self. A volunteer names Jim came and brought her some animals to paint and she talked his ear off for 30 minutes telling him anything and everything. By 8:30 he said he had to go because visiting hours ended and she continued to talk to him. I reminded her had to go and she finished her last story and then she looked at him and said ok you are now released, you can go!!! Too funny!!! I told her she was practicing for her Halloween costume, a queen, by being bossy!

 

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, but it should be higher because that is very low for her.

After her PFT she went to the exercise room to burn some extra energy!

Auntie Jill stayed and had lunch with us and then we went for a CT scan for tomorrow's sinus surgery.

I looked at the scan with a CF doctor and we saw that her sinuses were blocked again. She had this surgery less than 10 months ago, so it is hard to believe they are blocked again!!! Her polyps are smaller now since she has been on many doses of steroids lately but it will be nice to have all of this out of her nose!!

After I spoke with the doctor our good friend Steph Rodriguez came for a visit! She brought Natalie a new puppy stuffed animal and a bunch of cards from the students at St. Lucy's! Natalie loved these cards, because she knew they were from the kids that had the dance last year for her!!! Thank You St. Lucy!!!!

Natalie had a great visit with Steph. When Natalie got stir crazy again I gave her a gift bag from her Aunt Ceil and family in Texas. They gave her halloween treats and she played with them all over her room. Our great neighbors Arnie and Linda gave Natalie a horse jumping kit for all of her toys.

And then at the end of the day I gave her a bag from her teacher, Mrs. Szymkiewiscz. It had a card made from everyone in her class, a banner that said Get Well Soon signed by everyone and a stuffed bear to be her "twin" while her and Ryan were apart!!! Ryan got the same bear!!! How thoughtful and what a great idea!!! Aubrey got a kitty too. We are luck to have such a caring teacher!

 

 

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 plastic knives!!!

After we made a mess we went to the 12th floor and played on the fire truck. Ryan loved "steering" the truck and Aubrey jumped all over. To end our morning, we walked to sprinlkes and bought delicious cupcakes for everyone!!

Natalie started to get stir crazy since she has been trapped for 3 days now.

We were fortunate to have Grandpa and Grandma Martinez visit and then Auntie Christie arrived, with a my little pony and jewelry. Natalie made a bracelet and one for Ava so this passed more time!!! After Auntie Christie left we had dinner and Uncle Mike and Auntie Gina arrived. She made a sparkle horse with Auntie Gina and then played hangman against Uncle Mike and Auntie Gina. We laughed and this made Natalie smile the entire time.

After they left Natalie and I played two more games of hangman, (Auntie Gina spelled a word for Natalie so she could still play.)

 

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 know what her room looks like. On the otherhand this was VERY difficult. Aubrey does not understand why she can't go in Natalie's room and play and give her hugs!! So we tried to explain it to her but we didnt succeed. It was hard on Ryan too, because he misses his twin!

The kids could walk to Natalie's door frame and I put the yellow coat on them and they gave a quick hug! Afterwards we left because Aubrey was yelling to go in her room.

Grandma and Grandpa stayed with Natalie while Joe and I took Ryan and Aubrey for lunch. After lunch we went to the Lego store for a quick shopping spree. Ryan loves this store, so it was nice to ttake him somewhere he enjoyed since I won't see him the rest of the day. It was a gorgeous day downtown so we walked around for a little while before we went back to sit with Natalie.

After the kiddos left, we played games, colored and watched movies to make the day go by as fast as possible.

We continued the IV meds and we are still trying to find the righr dose of anitbiotics.


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