One face in 30,000 with CF

One face in 30,000 with CF
One of the many faces of Cystic Fibrosis

Thursday, December 30, 2010

Who nose the picker?

Zoey and I had a wonderful day today. We have gotten a ton of snow and it is really cold so we have been stuck inside all week. We are getting a bit of cabin fever. I am thankful I am off this week though so we can be home where it is warm and off of the icy roads. Zoeys new favorite thing to do at home is hang out on my bed and cuddle with me and the dogs. We also have the most wonderful conversations. I do not have a clue what we are talking about but I love every minute of it, and Zoey loves it too, we can see it in each others faces. Today I turned on some music and we just hung on my bed for awhile. I started teaching her body parts. I ask her where her belly is and she pulls up her shirt. I ask her where her eyes are and she pokes me in the eye. Then we got to nose. I would touch her nose and say...nose. Then I asked where is Mommy's nose? She stuck her finger in my nose. I laughed and said no just touch my nose. After a lot of practice I would say where is mommy's nose and she would touch my nose. Then I said where is Zoey's nose? She stuck her finger in her nose. I cannot convince her to just touch her nose, the finger goes in every time. Who knew in teaching my daughter where her nose was I would accidentally teach her how to pick her nose. Awww the joys of motherhood.

Zoey is starting to cough again. Not all of the time just every few hours. It concerns me a little because it is a dry cough, not gunky so I am thinking it is not productive, nothing is getting out. Or... maybe I am being paranoid. I will watch it for awhile.

Here is a picture of our front yard right now....

The house you see is across the street. I took the picture from my window where it was warm!!!!! You can see the sidewalk where my husband cleared.


Wednesday, December 29, 2010

Tuesday, December 28, 2010

News

Well after lots of nerves and waiting we finally got answers. Zoey has some type of gram negative bacteria that the nurse could not pronounce. TOBI works on it so we don't have to go back to the hospital, we just have to go back to clinic at the end of January to get her re-cultured. I have to admit I don't really get it, what is a gram negative bacteria? I looked it up, I now know psuedo is in that category and there are also gram positive bacterias....what? I wonder if I will every completely understand. I also wonder if I really need to understand, I just want to know I am doing the best thing for my child. I have to trust that the CF clinic has her best interest at heart and I can put my trust and faith in them. It is really hard though. During my MS journey I had a lot of doctors treat me like a hypochondriac. No one believed me when I said something was wrong. When I found out the truth I wanted to go back to every doctor I went to in college and say I told you so. But this is different, we have a diagnosis for Zoey and a list of standard care for CF patients.  Anyway thanks to everyone for your kind words of encouragement and thanks for all of the Christmas blogs I read. I am working on one but first I need to download my Christmas pictures. Not a huge project except since we have been home from the hospital Zoey is connected to my hip so the only time I get is at night, but I am heading to bed, I just wanted to let everyone know our GREAT news.

Saturday, December 25, 2010

Merry Christmas

Just a short update. First Merry Christmas to everyone. Second, they let us leave the hospital. We will not have final results on her lung culture till Tuesday so there is always the chance we will go back in but most likely she may just have to add some meds to her long list, and maybe the TOBI will take care of it, we just don't know. All I can say is we broke out of that joint and we are home. Zoey is now eating M&M's from her Christmas stocking, all is well. We do have to start TOBI again today so that should be interesting with all of the new toys around to play will.

Merry Christmas and Much Love,
Zoey, Kortney and Randy

Thursday, December 23, 2010

What now?

Well, the wonderful doctor came into Zoey's room today. He said the lab called him and said that there was no psuedo. YAY. We beat it munchkin!!! Then in the next breath he said the lab tech did not know what it was. Zoey has found a new bacteria to grow in her lungs and they don't know what it is. They have to send the lab out for someone else to look at it and they will not let us go home until we know what it is. That means Christmas will be spent in the hospital. The funny thing is I don't even really care about the Christmas part, Zoey will not know the difference anyway. What I care about is the not knowing, not knowing what our next challenge is going to be, or even if it is just a mild bug that is no big deal that they cannot figure out. I hate you CF. I heard another CF mom say this once and I agree with my whole heart. CF if you were a living being I would kick your ass, leave my baby alone. FUCF. So happy holidays from the hospital. I hope everyone has a wonderful holiday. I know we will, it does not matter where we are at, the point is we are together, Zoey, Mommy, and Daddy, and a bunch of extended family too.




Eating a cookie and getting crumbs in mommy's bed!

Monday, December 20, 2010

Rhino Virus

So I asked the nurse today to check her labs from yesterday. One of the panels came back... All negative except one. She was positive for the Rhino Virus. I looked at her and said what is that? She told me it was the common cold. I laughed, and said well I already knew that, my husband and I both have a cold and Zoey got it too, I already told the doctors that. I guess they had to double check and add probably about a 3000.00 bill to my insurance for that test. lol. So now we know, no RSV or MRSA. The psuedo culture is not back yet, but I knew that one would take a few days.

A new pulminologist came in today and told me the results of her x-ray. He said no change, it is not better or worse. Well ok I guess but what else can we do to get that nasty mucous out of her lungs? I figured 4 treatments a day would help a little more I guess.

When Zoey woke up this morning I thought she was a different child. She just sat in my lap, did not run around. I thought great, the hospital is taking her spirit and joy in life. When the nurse came in first thing this morning she jumped out of my lap and hid in a corner. That about broke my heart into a million pieces. In fact if you looked in my chest it probably is in a million pieces right now. But as the day went on my feisty little girl came back to me, a little bit at a time. What really helped was she took a 3 hour nap. The RT came in to do her breathing stuff and I said Steve I like you but if you come in this room and wake her up I am going to have to hurt you. He laughed at me and said ok we can skip this one. I know it is important but I think sleep is just as important, and she had a really bad night. She keeps waking up wrapped up in her feeding tube or her IV. Sometimes I think she wakes up because she is thinking she is going to get poked again which has happened a few times. My princess needed her sleep. When she woke up she was Zoey again, running, trying to escape the room. She even put her coat on upside down and backwards and said go! Today she also discovered that french fries dipped in a chocolate shake and fry sauce was totally awesome.

We have also learned Zoey has lost a little weight. It is really equal to maybe a couple of ounces which does not concern me but it concerned the nutritionist. She came in and asked if I knew why. I said well she is in the hospital scared to death and on antibiotics that upset her stomach and cause loose stools. I think that sums it up. I think she will be fine just send us home!!! Well she did not accept my answer so they are upping her feeds a little at night.

I got great news tonight. Even if we are still here at Christmas my husband will be here too. We thought he might have to work but the other mechanic said he would take the emergency calls so Randy could spend Christmas with us. That brightened my day as well as a visit from my Aunt and Cousin who always makes me laugh.

Well I am headed to bed I hope everyone is loving the Christmas season. I am leaving you with a picture of Zoey eating her fry/shake/sauce combo, her putting on her coat, and a bear that was given to her from a child who has never met her but donated a stuffed animal to the hospital. So Lacy, whoever you are thank you so much, Zoey learned how to say Bear today with your wonderful gift, and she has been playing with it all evening.



Sunday, December 19, 2010

Some Results

This day by far has been the worst day but we did get some good news, and I am thankful the day is over and we are one day closer to going home.

OK so surprise surprise for the fourth test in about 3 months, c-diff is negative. Good news for that, but bad news, we still don't know what is going on with her poor tummy. She has nasty gas and diarrhea and belly aches. The only thing I can think of is that her enzymes are still not right. I don't know but my poor baby has had enough. She had two very smelly very wet poops today that ended up all of the way up her back.

We are still stuck in the room waiting for other test results. I would tell you what they are but I have no idea. Something to do with viral things because she has caught my cold. I know one of the things they are checking is MRSA. And of course they did the psuedo culture but we won't know about that for days and days.

Her x-rays looked better...yay us. I could still see abnormal spots on there but who am I kidding, I am not a radiologist so it is not like I actually know what I am looking at. We had a nice little surprise with that Xray. Her picc line ended up in her neck some how. Then I had some back up Sunday doctor who was probably an intern come in and talk to me and he caused a major melt down with me that was not even needed. He told me all of her meds are getting in fine but they have to pull this picc and put in a new one. I said well if it is working why would you put her through all of that again? He said well she can develop a clot there that will go to the heart or brain. I said ok when will we do it. He said I don't know I have to call the picc team and she has to not eat for six hours. At this point I am thinking great my daughters life could be in danger and he does not know and how long has it been like this anyway, she has had the Picc since Tuesday. Shouldn't they check these things more than once? They did check with an xray right after it was placed but maybe they should do a portable ultrasound on it every day to make sure it did not flip up into the neck. Anyway the picc team came in, flushed it, moved her arm up and down really fast a few times flushed it again and it went back down to her heart. That doctor told me she was going to be sedated again and a new picc put in. That was hard enough the first time to think it was going to happen again was way more than I was prepared to deal with, I could have killed him. I told the nurse I did not want to see him again, I will wait to talk to a doctor that knows Zoey and is not just filling in because it is a Sunday. Of course he came in and said well it turned out ok. I was thinking how about saying you are sorry, but I didn't I just let it go.

So again we are just waiting, in our room, Zoey still cannot leave until we get the rest of the results back. My heart is breaking for her. She just cried and cried and cried all day today. I just want to make it better for her, she is so scared. After her vest treatment was done she looked at the lady doing her breathing stuff and said "DONE". It was really cute That is yet another word I did not know she knew how to say.

As she drifted off to sleep tonight I told her tomorrow was going to be a better day. No tests tomorrow, no xrays, no cultures, no cleaning the picc site, just RT and IV's. Better day is coming tomorrow!!!! And negative results so we can leave this room and go play in the playroom. She needs to just run around and play!

Waiting

We are doing nothing but waiting. Here is the update. Zoey came down with a cold that I came down with a couple of days ago. She had really bad belly aches yesterday and raging diarrhea so they took a sample for a C-Diff test. We are waiting for the results of that. Dr. C said we could go home on Christmas Eve if we manage to get rid of psuedo. They are taking a swab for that today, we are waiting for them to come in and do that. We also can only go home if her X-rays look good, we are waiting for them to come up and do x-rays. Zoey is not allowed to leave her room until we get the C-diff results back so I am staying in the room with her. It is nothing but silence. Silence in a different way. I hear Zoey's movie playing in the background, and nurses outside the door doing there thing. But we are alone in this room, no one really to talk too but each other. And I gotta say I love my baby but she does not have the best conversation skills. :). I love my husband but today I have started to resent him. He is at home going on with his life, not stuck in this room, not worrying about every cough, every test result, her not eating. He is off jamming in a band with a new friend. OK this is turning into a negative, stressed out, tired of the hospital, post so I will end it here. But of course I will add some new hospital pictures of my princess.



Thursday, December 16, 2010

Thankful Thursday

  • I am thankful for the amazing nurses and doctors at Primary Children's hospital.
  • I am thankful they gave Zoey a break from blood draws today.
  • I am thankful for this wonderful one on one time with my daughter.
  • I am thankful Dr. C is finally letting us try the vest instead of CPT.
  • I am thankful for the bed they put in Zoey's room so I can stay with her all of the time.
  • I am thankful for the playroom where kids can run around and be kids instead of patients.

Tuesday, December 14, 2010

Broken Heart

For her I try not to cry. I must be strong for her. It is hard because my heart is breaking. Every time she looked at me scared with her big blue eyes today and big crocodile tears I just wanted to take everything from her. The pain, fear, CF, everything. I just want to make it better for her. I am so scared that this is going to destroy her spirit, her happy go lucky dance, laugh, smile, torture the dogs spirit. Why can't I fix this?

Our day started waiting for the picc team to come and put the picc line in. She was very scared from the beginning with these strange people in her room with a mask and funny hat and yellow coat. She cried and cried. Then she was sedated and was in very happy land. That part was actually funny. She was a drunken sailor for awhile. They put the pick in, and she yelled at the doctors with her feisty little spirit. She yelled no and don't. Then they took the xray and it turned out the picc ended up in her neck so they had to pull out the stitches and adjust and re stitch. The rest of the day she ate like she had never eaten before. Her bedtime snack consisted of a cup cake, a half a bag of cookies, and two containers of apple sauce. We also did blood draws and four breathing treatments and the never ending line of IV's. We both were able to take a nap though which was very good, and we managed to go for a walk around the hospital. She did see a little boy her age that she wanted to play with and had to suffer yet another disappointment from the day. He was here for CF too. They are not allowed to be within three feet of each other. 


Zoey is asleep now and I am sitting here catching up on my emails and reading the blogs I read, and I am finding myself homesick. I miss my husband and my students and my dogs. I miss my life at home but I know Zoey and I are where we need to be to keep her lungs healthy. Zoey cannot verbalize it but I am sure she is missing her Daddy too. She just loves him. I am sure she misses her toys and her bed and her house and her babysitter. She just loves her babysitter and playing with all of the kids. We are missing out on the Christmas season, driving her around to look at Christmas lights, and we were going to make Christmas cookies for the neighbors. And her cousins were supposed to stay with us for a week, and we both were way excited about that and so were my nieces. I am filled with disappointments right now but there are some positives in this situation. Zoey and I are getting a lot of one on one time together. We can play and watch her favorite movie Tinkerbell, and cuddle. Just spend time together. When we are home I am worrying about laundry and dinner and cleaning and treatments. Here I pick up the phone and order her dinner, I have nothing to clean, and treatments and medications are taken care of. The only thing Zoey and I have to do is be together. Zoey just has to concentrate on getting this bug out of her lungs and I get to be the one to comfort her when she is scared. I am trying so hard to focus on the good and stay strong for her. If I am ok she will be ok.


 She has had a shower and she is over today. She is thinking I am done get that camera out of my face!
Cupcakes with sprinkles all is well with the world.

Shower Heads

Thanks Sandy for this link. Yet another thing to worry about but I will be working on my shower heads. Zoey has grown psuedo and staph, there is probably something to this.

http://www.kfoxtv.com/news/22708368/detail.html 

Monday, December 13, 2010

Hospital.....really??

Okay, so we had a new development today. I wrote before how Zoey was developing a cough. Well I called the clinic and they thought that she should probably come in for a clean out. It was mine and my husbands choice but in the end we decided to come in for several reasons. One..... we did not want to put it off and take the chance of her getting worse. Two..... if I missed work this week then I could still be at home with her a week to get her re-introduced to the real world and then I could go back to work with the students after the Christmas vacation. And three and this is a big one, we have reached our max out of pocket for insurance, if we did this now it would be cheaper for us. That is a horrible thing to say but the clean out was going to happen anyway, we just chose to do it now instead of in January when she probably would be feeling a lot crappier.

Now I don't know how clean outs are in other hospitals but I have a love hate relationship with this hospital. There are Child Life experts here and the are wonderful at finding things to do for Zoey. The nurses are wonderful. The doctors are wonderful. The hate part comes from the fact that I have to give her medical history to 3 different doctors. We have interns and residents and lead residents and the head in charge of the whole thing doctor, and then tomorrow I am sure I will be passing the same information on to the pulminologist on call. I am wondering why they can't just share notes. I love my baby but I hate having to talk about her illness over and over and over again.

The hate part also comes from being away from my husband and my life. And then again..... I love having a two week vacation from having to remember this med and that med and feeding tube and breathing treatments. I can just lay back and read a REAL book, and play with my baby, and let the nurses deal with her medical stuff. I hate hospital food....I hate that today I had to tell the respiratory therapist that he was giving her inhaled meds in the wrong order. I mean really...??

I had something said to me today that really irritated me. One of the many doctors talking to me said she heard through the grapevine that I had MS so I really could not take care of Zoey all that well due to my health. I wanted to say Screw you, I do everything asked of me from the doctors, never complaining. If I am having a bad MS day then I pass it on to my husband but we are a team. I am wondering if the only reason why I am here over Christmas is because they think I can't handle giving her more breathing treatments and antibiotics. Well I have news for them. I am Zoey's primary caregiver. My husband helps but I am the one that keeps track of treatments and medications and getting everything refilled, for me and HER. When I need help I ask for help.  My daughter will always get the best care ever, and my husband and I are doing just fine, MS or not.

Then....in the next breath I wonder what I am doing wrong. I know CF moms, many of their kids are two and three and have never been in for a clean out. This is Zoey's second. I do everything they ask of me...what am I doing wrong? Why is she always in the hospital.

As I ramble on I think I am going to end this and try to get some sleep before the nurse comes back in to switch the IV's. I will keep everyone posted. Here are some pictures of her being moved rooms. She refused to sit down. And then her CPT...she fell asleep.



Sunday, December 12, 2010

No more than two and black and blue.

HMMM and the world's worst mommy award goes to drum roll please.... um...me! I feel so bad, my daughter looks like she has been hit by a truck. Last weekend she climbed up on the couch and hit her cheek on the table and got a bruise. Today she was standing by the dogs and they knocked her into a table, she has a black eye and another bruise on her head. She cried and cried and cried and cried. I just wanted to make it ok and I couldn't. Here are the pictures, the poor little bugger. It looks like she has my luck, I am an accident waiting to happen too.


The bruise on her cheek is the one from last week, the one on the eye and forehead are from today.


 I started Zoey on Orapred today. The doctor gave it to me to give to her when she starts getting a wheezy little cough. She has. She is not sick this is a straight up CF cough and it is scaring me. I know I cannot fix everything but I really don't want her to start feeling icky. We cannot start the TOBI till the 23rd and I am scared the psuedo is spreading in her lungs and there is nothing I can do about it. Maybe there is, I am going to call clinic tomorrow and let them know what is going on.

Anyway, I hope you all had a happy weekend and happy Monday everyone.
Much Love,
Kortney & Zoey

Friday, December 10, 2010

Sarah

So I have been reading Sarah's blog "Not So Bright And Shiny". She says some really profound things that are sticking with me. Even through her grief she inspires me to fight that much harder. She reminds me of what we are fighting for. I am typing this post in red for Connor. This blog is not as upbeat as other ones I read but I do this for a purpose. I agree with Sarah, CF is not as bright and shiny as the CF foundation wants you to think, and sometimes you want them to tell you the truth!!!! The not so sunny truth. Because.....through the truth I fight that much harder for Zoey, I work that much harder at keeping her healthy, and I don't drive myself crazy trying to figure out what they are obviously not telling me. And through all of the fighting the optimism comes out in me. I know I am fighting and doing everything I can for my child and hopefully setting an example for her so she has the will to fight too. And.... now I am sticking up for my daughter, I am making people wash their hands and I don't care what they think of me, I am always fighting. Anyway this line stuck out in my head.

"Connor has no choice to have CF so I have no choice but to fight for him"

That is it.... in one simple line, what I a sure we are all feeling.


Have a wonderful day and keep up the fight for the cure!!!!

Thursday, December 9, 2010

Thankful Thursday

I had to think long and hard on this one. It has been a rough day. All I can say to Zoeys doctor is I told you so! I knew she was a little bit off and more out of breath than usual, and sleepier than usual. Why do doctors think they know all and not listen to the mom? The first part of her culture came back positive for pseudonymous. We did not beat it yet!!! and I stress YET!!! We will get you you dirty little  bugger.I won't know the rest of the results till next week. Ok here goes!

I am thankful for TOBI.

I am thankful they made us come in early for another culture!

I am thankful Zoey's weight is at a safe level so she can fight that much harder.

I am thankful I stayed home today, not because I was feeling crummy but because I had some wonderful moments with Zoey today and she was not feeling all that well, she had her mommy with her and not the babysitter. I am also thankful I am feeling better, it was a good choice for me to stay home too.

I am thankful that they have the vests, I am wondering how any of you paid for them???? My insurance will only cover about 5000.00 of it, I am still thankful I have insurance though!

I love this picture of us, she was still tiny tiny. I cannot believe how fast she has grown.


Wednesday, December 8, 2010

Peace

This last couple of hours is the most at peace I have been since about October. Randy, Zoey and I were cuddling on the couch and watching Zoey's favorite movie at this time "Tinkerbell". I love to hear her giggle at the things she finds funny. Zoey's Daddy fell asleep and started snoring. Zoey climbed over me looked at her Daddy and bent over and gave him a kiss. It was hands down the most innocent cutest thing I have every seen in my life. Zoey just loves her Daddy and tonight her affection for him really showed in the sweetest way possible. At that moment I finally understood what was becoming one of my favorite quotes. I don't know who said it and I am not sure I can repeat it word for word but it goes something like this. "Life is not measured by how many breaths you take but how many moments that take your breath away."

Wordless Wed.

Since I just started this blog a couple of months ago I figured I would share some baby pictures of Zoey today. She has grown so much.



I think she was sick on this day



 Smaller than her first doll
 First family photo. I don't think I had slept in days
 First smile
 Second clinic visit. I know it was the second because I don't look so scared and shell shocked
 Ella, a partner in crime


 Aries, another partner in crime.
 Met Mickey Mouse in hospital
 First clean out where we learned NG tubes suck and the G tube much better
Had to be on oxygen her first few hours of life.  If only I knew then  what I know now!


Tuesday, December 7, 2010

Clinic

Our clinic visit was good. Zoey is in the 30th percentile for weight and the 60th percentile for height and her head circumference is in the 90th percentile. The good news was that her BMI is in the 50th percentile...yay, that means a healthier lung function. I am so excited.

Now let me see, two c-diff tests, both negative results. Hmmm and I said I think we need to re-look at her enzyme dosage. Well sweet revenge. Zoey had the stinkiest poopiest diaper in the clinic room. Right has we changed it the doctor walkied in then walked back out, it stuck so bad. She said she could not even walk in the room did we give her her enzymes. I said yep, and finally the dosage was raised. Hmmm listen to the mom they know what they are talking about.

Then I said she has been running out of breath lately and taking a lot of rests. The doctor told me that was normal and we needed to get her exercising more. I wanted to ask if we should use the treadmill or the spinning class. Seriously what? She is heading into her terrible two's. The kid runs from one side of the house to the other non-stop. It is not a lack of exercise I am sure. My husband and I fully plan on putting her in any activity that interests her and keeping her active but a one year old...really? Anyway I am going to let it go and see now she is doing and see what her culture results are.

I can go on and on and on, sometimes I think the doctor must not have kids, but she does.

Zoey has had some big moments. She looked at me and said "you stink" that is what her dad says to her when she poops. She pointed to the dogs and said "no stay dogs". She has more and more words coming out everyday. It is so funny how fast she is learning.

I did have a little scare on Monday. I went to get her out of the car and daycare and she was not responding. She was staring forward eyes wide open not blinking. She did not respond to my voice or my touch. I even took a toy out of her hand and usually that makes her cry but she did not move or blink or anything. As a teacher I knew it was an absence seizure. I have kids that have those sometimes. It still scared me. It is the only time it happened so her doctors just want me to watch and see if it happens again, it could have just been an off the wall thing. To me though I am thinking great one more thing to worry about. But in the grand scheme of things that is so low on the list because they are not dangerous or anything, and most kids grow out of it. It is not even a CF thing I have no idea why this happened.

Anyway we are excited about her weight but waiting on pins and needles for her culture results. And really excited for the holidays. I get my cute nieces for a few days so that will be fun fun fun.

 She wore the mask for the first time, well sort of. I was holding her when I took this picture. The next one is of her bruise on her face. She ran into the end table climbing up on the couch