Our journey with CF

Trials

2010-11-27T14:24:00.001-06:00

Cheyenne has been struggling with pneumonia and bronchitis since early October. We thought we had it beat but it is back in full force. She started another oral antibiotic and steroids this past Monday night but so far, there is no improvement. She has been sleeping 10 to 12 hours a night and then resting throughout the day as well. Cheyenne is a pretty ~~hyper~~ active child, so this is not normal for her at all. I will be calling the clinic on Monday if there is not a huge improvement between now and then.

I struggle with how her health is, while she takes it in stride. It is all she has ever known. She is doing so much better than she has in the recent past. I know the Lord touched her and she didnt/doesnt have to have her lung removed as we were told 6 months ago and we are so very thankful but I thought she wouldnt ever be sick again..lol..foolish huh? Satan does like to attack. Attack he will..win, he wont!! By His stripes she is healed. Has it reached its full manifestion, not yet, but it is coming.

We had a great Thanksgiving. I hope you all did, too. My older sister used to come to my house every year for Thanksgiving so it is still pretty hard not having her with me, but I made it semi-okay despite missing her. My sister and I shared cooking duties and we took it to my parents house so our mom didnt have to do anything. She is a klutz like me and is currently nursing a broken foot and broken elbow...well if you are going to do it, do it good, right?

Its everywhere

2010-10-23T00:15:00.001-05:00

It seems like everywhere you go, everywhere you look..CF is there also. Today, this site I like was giving away free Ipod songs. I dont have an Ipod but thought I would check out the songs anyway. I clicked on the link and this is the first thing I see.

I have no clue who/what they are but it still caused my heart to skip a beat.

While getting new glasses for Cheyenne a few months ago, I thought I would look at frames as well. I turned around to the ladies frames and this is the first pair I saw.

Again, my heart skipped a beat.

Even the card in my camera is a CF card. It doesnt matter where you go or what you are doing CF is a part of your life if it is in your life at all. KWIM?

What has been going on...

2010-07-08T21:40:00.002-05:00

I have hesitated posting about this since so many people I know are not doing very well or have suffered a loss recently due to CF, Cancer or some other malady. I need to get this out there so other will see the wonderful power of the Lord!! I know some people reading this may not believe it, I cant help that...I can only tell you what has happened!!

Some of you know some of what has been going on..some of you know more, but none of you know everything. I am going to give you a glimpse into the life of Amber Cheyenne Long.

Cheyenne was born at 32 weeks, perfectly healthy. She required no oxygen nor a stay in the NICU. She came home with us at 2.5 days old.

When Cheyenne started having respitory problems, digestive troubles and was failure to thrive…the doctors contributed it to being a preemie. By the time she was diagnosed with Cystic Fibrosis at age 5, she had had pneumonia about 20 times.

Cheyenne has had many hospital stays over the years, which means, she has had many tests to find the many problems she has developed that are directly related to C.F.

In January of 2009, during a very severe exacerbation (lung infection) her doctor decided to do a bronchoscopy (bronch). At that time, they found out Chey has left main bronchial stenosis. Which is a narrowing of the bronchial tube leading to the lung. She was also diagnosed with liver disease and placed on medicine to help. She was also diagnosed with CFRA (cf related arthritis), she is pre diabetic. At that time it was decided Cheyenne would start being admitted every three months for intensive treatment of her CF. Her lung functions we declining. She had a port a cath implanted in her chest for all of the IV treatments she would be receiving in the future.

It was decided she would see a surgeon in STL to see what he could do to help. We finally made our first trip in July of 2009. By that time, Chey had had pneumonia almost 40 times. With documented scarring to the lungs. The surgeon decided it was best to just try and use dilatation on the bronchus to open it up. The hopes were…that it would stay open on its own and wouldn’t require any further treatment.

For the past year, we have been going to into St. Johns every three months for 2 weeks and then doing home IV’s for 2-4 after being discharged. We have been going every three months to STL immediately following her discharge from St Johns.

In January of this year, the STL doctor said he thought he may be damaging Cheys airway more than it already was and may not be able to do the dilatation any more.

In March, Chey was admitted for her 3 months stint in St. Johns and it was discovered that she had high blood pressure and was placed on medicine to help control it, bringing her daily medicine count to 18 different medicines to be taken at least once per day. It was also discovered that she had a minimal amount of air in her left lung due to the fact that the bronchus was closed off again. She had a PFT ( pulmonary function test) done and it showed her lung function to be 47%. When that number reaches the 30’s, they start the transplant evaluations.

April 7th, I took Cheyenne back to STL for the dilatation. Alan couldn’t go because he was just discharged from st johns after having his gall bladder out. The doctor did the dilatation and then came to speak to me. He was very somber. He said it was the worst he had seen it and said he couldn’t go in there anymore because he was making things worse. He said we have two choices.

1) do nothing more and let the bronchus close off and kill the lung, then remove it…or

2) place a stint, which is not recommended because it will cause problems of its own and especially since she has CF, and when it closes off and kills the lung, then we will remove it.

I didn’t have to decide right then. We are to tell him our decision at our July visit.

Chey just couldn’t shake a lung infection, continued to have fever….increased cough and sputum, dispite being on antibiotics…orals and IV’s for all of this year.. So, on May 12th, her local CF doctor decided he would go in and see what was going on in her lungs. He said it was terrible in there and we needed to get her to Cincinnati Children’s Hospital ASAP. He said there is a doctor there that does airway reconstruction and he may be able to help Cheyenne. He continued to say, if this doctor couldn’t do anything to help…in the near future we would have to remove her left lung and list her for a unilateral lung transplant.

So, off to Ohio we go. We get to the children’s hospital on Wednesday..check in and find all the places we need to be on Thursday. Thursday morning Chey has a CT scan. Followed by a PFT. After that, we met with the surgeon to go over the tests results and get a game plan for Fridays surgery.

The doctor came in and said he spoke with the STL doctor at length. He said STL doc told him he wished he had never gone in there because it was a mess and he was making it worse. He also spoke with the local cf doctor and he told him the same thing.

We then discussed the tests from that day. The CT scan was absolutely perfect. Her PFT showed her lung funtion to be 80%. He examined her and said he didn’t think he would find anything on Friday when he went in there. He said he wasn’t 100% sure or he would send us home. He said he would go in there and see what was up and the other surgeon would take a look right after him to see if he could help. And they would decide if they were just placing a stint or doing reconstructive surgery.

On Friday, we went to the surgery unit..checked her in, got situated and waited on the festivities to begin. They said it would take about one hour and 20 minutes. Forty minutes later, they paged us, she was in recovery and ready for visitors. The doctor came in to see us. He said he didn’t know what the other two doctors saw, but he didn’t see anything out of the ordinary. He also said if Chey was his usual patient, he would redo her CF testing because he didn’t see any evidence of it. Lungs are perfect, no scarring whatsoever. The bronchial stenosis is gone. He did say she has some bronchial malacia but it wouldn’t cause her any trouble.

Last Wednesday, I got a call from OH…her culture results we totally normal. She has only had one other clear culture result in her life and that was in May. We had a regular CF clinic appointment and was to be admitted to St Johns right after the appointment. Her doctor came in asking if he wasted our time sending us to OH. We told him what the doctor said, I showed him the pictures. He asked what he said about continuing her medicine and cpt therapy. I told him he said it wouldn’t hurt her to continue..he said he didn’t want to stop it cold turkey, we would wait and when she doesn’t get sick, we will start backing it off. He grabbed my hand and Cheyenne’s hand and said LET’S PRAY AND THANK THE LORD FOR HIS HEALING TOUCH!!!!!

This blog has been all about CF and sickness...I will continue to update on here from time to time but I am starting a new blog and I want it to be my main blog. I will try and post on it on a more regular basis.
You can find it by clicking here. Please follow me as our journey continues...you never know what might happen.

Country meets the field!!

2010-05-03T20:22:00.000-05:00

A fun contest on Riggs family blog.

NutDucky, how did she get that name?

2010-05-03T16:38:00.000-05:00

When Cheyenne was born, her hair stuck up all over. It didnt matter what you did to it, it stuck straight up anyway. The director of the adoption agency came into the hospital nursery, took one look at her and said her hair looks like a duck. So we called her Ducky. When she was a little older, I started calling her my Peanut, because she was so small. My older daughter Princess aka Ciara, said we should call her NutDucky instead...so 9.5 years later, she is still NutDucky.

kick in the stomach

2010-04-18T22:27:00.002-05:00

The clinic visit yesterday was a lot worse than I expected it to be. The plus side is...she is off IV meds and on a strong oral..but only for a few days. He is waiting on her culture results to come back to decide what to put her on. I am sad to say, that is the only plus to the whole visit. He thinks she is culturing one of the big bugs..if the culture results come back not showing anything, he will put her in for a bronch and see what is going on.

He said it is imperative we get to Cincinnati ASAP..he feels we will not see any improvement until we go...that is based on them being able to help her...if not...he said he doesnt know why some cf patients have it worse off than others but we just have to do what we can...I told him it wasnt as easy as all that from where I was sitting. I felt like I was kicked in the gut.

Please pray they get all the details worked out with insurance and scheduling and we have the resources needed to go to Cincinatti.

Thank you,

Debbie

Great Strides for Cystic Fibrosis

2010-04-14T10:19:00.004-05:00

Please help in any way you are able. No amount is too small, it all adds up. You can donate by clicking on the link on the right...please feel free to pass this along. If you are interested in joining out team and walking with us on May 15th, please let me know ASAP, as I need to order shirts.

Suggested amounts based on information about Cheyenne
$9.19: Chey was born on 9/19/2000.

$5.11: Chey weighed 5 pounds 11 ounces when she was born .

$4: Chey weighed 4 pounds at 1 month due to failure to thrive.

$37: the current lifespan predicated for those with CF is 37 years, if born today.

$74: DOUBLE the life expectancy for CF…Chey's going to get there with your help.

$9.50: Chey has beaten this disease for 9 1/2 years already.

$5: The age Chey was when she was finally diagnosed with CF.

$40.05: the number of miles, one way, we drive to St. Louis, Mo.(405 miles per Mapquest) for treatment at St. Louis Children's Hospital.

$2: Chey needs her two lungs to remain healthy to beat this disease and they want to remove one of them.

$60: the number of minutes we spend each day on breathing treatments.

$20: the number of hours Chey spends getting IV treatment.

$50: The number of pills Chey takes daily to keep her healthy.

$100: our dream is for Chey's lung function to be 100% (sadly, its not half of that).

Life continues

2010-04-06T21:41:00.000-05:00

I picked Alan up from the hospital today. He is doing well but sore. He is not at all happy about staying behind while Cheyenne and I drive to St. Louis in a couple of hours. I really have no choice. His doctor said he cant go and Chey's doctor said I cant postpone her surgery.

I will update after we return in a day or so.

Home IV's

2010-04-01T09:52:00.000-05:00

Hi all..Cheyenne is doing fairly well. She is getting really bored sitting around the house since she is feeling better. We went to the doctor on Tuesday for a post hospital/IV check. There are some concerns so he ordered blood work..we are still waiting to hear about the results. She will continue on with home IV's for one more week.

Cheyenne wants to show rabbits in 4H so I told her she had to clear it with her doctor first. She asked him and to my amazement, he said it would be okay..but she had to understand, if she started gettting sick..they would have to go. Since she is sick so much, I am not sure how we are going to know if it is from the rabbit(s) or not..lol.

Both girls are in 4H and have a Speech and Demonstration contest tonight. I am so shocked Cheyenne is planning on giving a speech. She found out last night that she will be alone on a big stage, so we will see if she really does give her speech...lol. Ciara is doing a demonstration and she is not shy at all so I hope we dont have to tell her to get off the stage..lol.

Chris is doing pretty good. It turned out to be two bones..one is chipped the other is fractured. He is stubborn (gets it from his dad) and has already returned to work.

My grandmother was released from the hospital. She is doing pretty good, too. I want to go see her but its not possible right now.

I found out last night that a friend of mine from forEVER ago passed away. I have known him for about 32 years..we had some good times and he will be missed.

Another friend of mine needs prayer for her grandson. He is 8 months old. He fell and thought he had a concussion. He doesnt, but some of his other tests are coming back "not normal" so they are trying to find out what is wrong with him.

Love and hugs,

Antisocial disease!!

2010-02-24T11:30:00.001-06:00

I am not very good at updating this blog. Maybe its because I was never very good at keeping a journal as a young girl. I often think of what to say on this blog..funny things I want to share. Sad things I think about. I would love to share the Lord with my readers..lol..I dont really have "readers", or not many anyway.
I know when things are not going so well, more people read what is before them. It is human nature I guess. For me, it is an opportunity to pray specifically for someone/something, but also to see how they are doing and offer encouragement.

There are so many things going on with my youngest child, Cheyenne, right now. She is getting sick again. The doctor put her on an oral antibiotic..three times a day until we go to "club med" on March 15th. Right after she is dicharged from the hospital, ~~a million~~ 45 miles from us, she will go back to St. Louis for treatment again. The local doc, is contacting Cincinnati Children's Hospital to see if there is a surgeon there that can fix the problem with her bronchi instead of just temporarily repairing it..which is causing more damage to other areas. Its enough going into the hospital every three months for a tune up, without having to do the other trips to the hospital too.

I am just rambling, really. It is so hard raising a terminally/chronically ill child. I feel alone most of the time. The only support I/we get is from others that are going through the same thing but not really from family. I dont feel like we get much support from the foundation either. We dont raise enough money, or not rich enough ourselves...we just arent in the clique.

I hate cancer with a passion..it took my sister from me...I have wonderful friends suffering with/because of cancer. There are children everywhere suffering with cancer...dying from cancer. I hate it for them...I really do. If there is ever a good thing associated with a disease...at least they have support groups. They have awareness. They have each other.

Cystic Fibrosis is an antisocial disease. I dont mean that to be funny, but its true. Unless you are in the same boat, you have no clue what I mean. Because of cross contamination, Cysters and Fibros cant be together. My best friend has a daughter with CF. We ~~cant~~ shouldnt get together because of the risk of cross contamination to the girls. They have so much in common ~~besides~~ ~~CF,~~ but because of CF, they cant get together.

I am sorry to be Debbie Downer...I am just down today!!

Firefly Photo Jewelry: { Hope for Haiti }

2010-01-17T23:29:00.000-06:00

Firefly Photo Jewelry: { Hope for Haiti } Shawna is having a drawing for a chance to win your choice of one of these adorable necklaces. Please check out her blog for your way to help and how you may win.

The Life of a parent to a child with CF (Cystic Fibrosis)

2010-01-11T23:28:00.000-06:00

Every day is a different day - you hold your breath and curl your toes each time they cough, hoping and praying it's not a precursor to something worse. Like any parent, you sit up at night when they're sick with fevers - but amplify this by holding the nebulizer mouthpiece of a snoozing or coughing child while you stare sleepily into the dark night. While the rest of the world sleeps, some tiptoe quietly into their child's bedroom to infuse a 12:00 a.m. IV treatment. Some parents kiss their children good night after reading a storybook and supervising teeth brushing - while some parents of PWCF also hook up a nightly tube feeding. This of course is after the nightly breathing treatment and favored method of airway clearance, e.g. clapping, flutter, vest, pep mask, etc. During these times, you learn how to operate on less sleep - and with an eye on the medical equipment surrounding you, wonder if it's possible to really take coffee intravenously... You learn to analyze the minute details of the monochromatic contents in a spit cup - and nervously watch for flecks of blood. You grit your teeth if you hear them cough up what sounds like a ton of gunk - to learn they spit into the sink and washed it down before you could check it. Changing the diapers of a baby with CF can sometimes be an exercise in gag control... Your toilets might plug up on a regular basis and you consider buying stock in Lysol products and whomever makes Cottonelle and Charmin... Parents of CWCF rejoice at each inch attained in height and every pound gained in weight - and cry at each ounce lost. School-age children take tests in school - our kids do too, but they also take blood tests, sputum tests and pulmonary function tests - some have bone density tests. School children have photos made each year - so do our kids, but they also get a photo taken of their lungs - and sometimes their sinuses and intestines too. Some endure finger sticks if diabetes is present. We aren't lucky enough to have a grading system of A-F - we have to figure out what numbers best apply to our child and hope human error hasn't cost us an extra stay in the hospital or the dreaded news the child is now resistant to a certain antibiotic. You learn how to hide enzymes in the foods of recalcitrant infants and tots. You learn to read labels for the highest calorie content. You learn the meaning of a well-balanced diet and your expertise in food preparation begins to rival that of Martha Stewart - presentation is 90% of the art of feeding any child. Anytime a Certified Freight truck goes by - you get a lump in your throat. Darn those big red and green CF initials anyway... Aren't we allowed to forget for just one minute? But on the other hand - you become a more compassionate, empathetic, and patient person. Despite trials, you have the opportunity to attain the golden awareness that everything you say - everything you do or don't do - really makes a difference in the life of your children. Every moment is precious. Even the smelly moments... Being the parent of a child with CF enables you to develop an inquisitive and scientific mind - scoping out information about genes, cells, organisms, herbs and treatments. Even if we weren't good at science when we were kids - just look at what we can do now! You also become adept at handling insurance and hospitalization forms... You learn to be gracious and tactful even when you don't want to be, like when a stranger or your child's new barber comments on your child's cold, or a clothing salesperson comments upon sizing difficulties because your child is too thin for his sleeve length... You learn how to be assertive so doctors and staff will listen - really listen to what it is you and your child need, because they are not gods nor mind readers... And even though you try not to push the envelope on the words hope and cure - they are always in your heart. Most every parent sleeps with one ear attuned to the littlest sound - but some parents of a CWCF listen for absence of sound, Is the oxygen tank working? Why did s/he suddenly stop coughing? Why isn't the air purifier humming? Sometimes you find yourself doing a load of laundry in the middle of the night - after your child has coughed so much they've finally vomited on their sheets and blankets - or fevers have soaked everything. In the beginning, you wonder, Is this something I should call the doctor to report? Then you learn to trust your instincts - you know when to call the doctor - and you want to be able to go straight to the top instead of dealing with a revolving door of telephone receptionists or approval from an HMO. As a parent of a CWCF your spelling and vocabulary improves. While your friend's minds are turning to mush from Barney and Mr. Rogers, you're learning to pronounce and spell words like: pseudomonas, aspergillus, and cephalosporins. You get a crash course in physiology and biology. You learn about clubbed fingers, oxygen and carbon dioxide exchange, and the role of the pancreas... ...And Part II of the sex ed talk you have with your teen takes on the added vocabulary word: vas deferens - along with the reminder, Just because you might not be able to procreate, doesn't mean you can go out and test the theory... your risk of contracting a sexually transmitted disease is the same as others in your peer group. After Christmas, while some are taking advantage of sales, you hit the pharmacy to pre-buy meds to take advantage of year-end tax deductions. You ignore the jibes of your friends who think you're obsessive-compulsive because you wash your hands frequently. You begin to resent the fact you have to remind health practitioners to wash their hands before touching your child or the things in his hospital room. You seethe when other parents send their kids to school sniffling, their noses caked with green crud. You buddy-up to the school secretary so when your child wakes up sick, she doesn't get tired of you calling and asking, So... just what is going around the schools right now? You teach your child to share - but stand aghast when your son's girlfriend shares her pre-chewed gum with him. At ticker-tape speed, your mind reels off the cost of antibiotics and vitamin c... You understand that when friends and relatives ask about the well-being of the CWCF, they don't mean to exclude the existence of your child w/o CF. Sometimes you feel like you're in a 3-ring circus. You juggle and balance home, work, hospital, and siblings. You often walk a tight-rope of emotions. You're in the lion's cage facing home-health and insurance issues (who else would hire so many Bozos?). You never hear about people running away to join a home - you wonder why people would run away to join a circus... You worry about your CWCF on their first sleepover. You count your blessings when the parent of your child's friend says, Show me how to do cpt so you can get away this weekend. In some parts of the world, there are certain rites of passage. Having a CWCF is also being aware of rates of passage: height/weight rates, O2 rates, sterility rates, insurance rates, mortality rates, divorce rates... And when people quote, It takes a village to raise a child, you realize just how big your village is, and how very grateful you are to have so many caring and competent villagers on your side.

The other shoe dropped....HARD!!

2010-01-07T00:27:00.000-06:00

We got home last night (Tuesday). I thought I would just wait to update until after we went to Chey's local CF doctor today.

Cheyenne's PFT's came up 10% since they opened the bronchus back up. Dr. C said she can stop the IV's, at least for a few days, to see how she does. Her cough is increasing again, but he wants to wait and see if it is just because of the procedure she had done. He also said she can go back to school on Monday. She is so happy about that since she hasnt been since the 1st of December.

Doc also said he had a long talk with the surgeon in St. Louis on Monday. They were both discouraged because of the condition of the bronchus. Apparently, it was totally closed off and in light of the new developement, they both feel, Cheyenne will need major surgery to see if they can correct some of the damage that is causing all this problem. Neither of the two docs are able to do this surgery, so local doc will be in contact with Cincinnati Children's, to see if someone there can help her.

Two weeks ago, one shoe dropped with the discovery of the hypertension/heart thing. Today, the other shoe dropped...along with my heart.

One year ago today, Cheyenne got a port. At the time, I thought that was a very bad thing. I stand corrected.

Long story short....

2010-01-05T22:22:00.000-06:00

Chey did great...didnt get admitted...the bronchus was narrowed down quite a bit so he opened it back up. He said there is another problem and is not sure which of the two is causing the other.

It would be major, major surgery to correct this new found problem so right now, we are doing nothing but waiting.

We are now home from St. Louis. Cheyenne has an appointment with her CF doctor tomorrow. Hopefully, he will say she can stop the IV's and return to school. It has been one month already.

Happy New Year!!

2010-01-01T23:44:00.001-06:00

I hope everyone had a great time while staying safe! We went over to our pastor's house for food, fun and fellowship. It was a great time..Julie, I finally played Bunco!! I got the biggest looser award..Yea me!

Chey is still on her IV's, doing pretty good. Still has a very wet sounding cough but only occasionally. I am getting pretty good at all the IV stuff and remembering to monitor her blood pressure.

I had previously said they had done a bunch of tests while we were in the hospital and all the results were coming back normal or close to it. Well, that stopped with the echo.

The echo showed she has Mild Aortic Stenosis and Left Ventricular Hypertrophy. Hence the reason for the blood pressure problems. He said, while he is not dismissing this as a mild problem, we have bigger problems right now and that is the loss of lung function. He is pretty sure the cause is the Left Main Bronchial Stenosis.

We are gearing up to leave on Sunday for St. Louis..Chey has to be at Children's on Monday morning at 5:45 AM. I have been on the phone with same day surgery and the surgeons office for the last few days trying to get things straightened out. Same day surgery thinks she is too sick to have surgery..surgeons office said not to worry about what they said...she is so sick because she needs the surgery. The doctors associate also said we may be at a point in treatment that we need to start seeing the CF team in St. Louis. I am not so sure I like that idea for several reasons. 1) We would be saying our local doc is not good enough to care for her. 2) she is so far progressed that local doc cant care for her. 3) we are back to being close enough for them to use the T word.

We also discussed the fact that the every 3 months thing is not working and they may need to do something different as far as opening the bronchus. She did also say, the main doctor may still want to do the dilitation and just do it every two months. Which would work a little easier for us since her local CF doc wants her to start going into the hospital every three months for a tuneup. He said if she is not sick, it would be for 2 weeks, if she is..it would be for 3 weeks.

I really dont know how people cope with chronic illness and such if they dont know the Lord. Sometimes it seems too hard with Him. We have to trust in Him....and we do!!!

I appreciate your prayers and kind words..I will update on Monday after Cheys surgery.

Love and hugs,

Debbie

Getting Paroled

2009-12-20T21:28:00.001-06:00

We have been here for two weeks (today). Things have definately improved and she is supposed to get to go home on Tuesday, providing we get good results on the echo. The tests on her kidneys, came back good except for high protein in her urine. He is not overly concerned right now and will check it again in three months, when she is not sick.

Chey is still having problems with her blood pressure so we will have to monitor it at home. He wants me to use a monitor that has a print out or records the readings. So I will have to find one that I can afford and get it before we go home. She will continue her blood pressure medicine, also.

He added a new medicine for her CFRA (Cystic Fibrosis Related Arthritis). So far, it is not helping too much...but we will see.

She will also go home on two I.V. meds and will stay on them until we return from St. Louis. She has an appointment on the 4th.

Day 10 in the hospital

2009-12-16T18:31:00.000-06:00

We are still here...still doing poorly. My beautiful girl is getting upset because she is still here. The doctor said he will decide on Monday if we are being transferred to St. Louis, Mo. We have an appointment for January 4th..but doc doesnt know if this can wait.

Too much

2009-12-13T21:59:00.000-06:00

Baby girl was feeling better today and I think she over did it. I had to share this pic of her from earlier today. Now she is passed out and has been for almost 2 hours and it is just now 10PM. She is holding some cookies, in case its hard to tell.

Blog Design Giveaway!! You could win

2009-12-12T22:33:00.001-06:00

Bloggy Blog Designz is having ANOTHER Holiday Giveaway!!! Last week every entrant won something, so they decided to do it all over again! They are giving away blog designs and all kinds of goodies. Plus ALL entrants will receive 20%off their purchase through the end of the year! Be sure to check out their website for more information, or to enter yourself. Take a look at their portfolio and packages to see what you want for Christmas ;) With 6 giveaways this week, who knows whats in store for next week?

The first 5 entrants will receive a $10 giftcard. The giveaway will close on Dec. 13th, so be sure to have your posts done and comments left by midnight! Good Luck to everyone! We are so excited. Merry (early) Christmas!

(Our Design List is open after January 1. Discounts from this giveaway do not apply to designz in progress)

http://www.bloggyblogdesignz.com/2009/12/another-giveaway.html

Hospital photos.

2009-12-12T13:41:00.000-06:00

I love the view from our window.

Taking advantage of her sleeping to get some shots.

Killing time painting!!

Chey has been admitted

2009-12-08T00:41:00.000-06:00

We actually came in on Sunday, but I am not good at updating this blog. She is doing pretty well now. The only thing we know right now is she has pnuemonia and an ear infection. We should know more tomorrow.

Surgery update

2009-10-12T10:35:00.001-05:00

OMGoodness...We had a major crisis yesterday (grandbaby mama drama) and we also had a death in the family, so that delayed my update. It has been so crazy around here I havent had a chance to update till now.

Cheyenne's surgery went great. It was closed again, so he had to re-open it. Dr. Huddleston says it will need to be re-opened every three months and he doesnt think it will ever be any longer in between and may become a shorter length of time in between. He doesnt want to do the stint right now because the disadvantages outway the advantages, so we will continue to go to St. Louis every three months for about a year and then place the stint at that time. That is what the doctor has said will happen....well, he isnt THE PHYSICIAN, so we will see what HE wants to do and follow that plan.

We are home now and Cheyenne is doing great and is in school as I type this.We will follow up with the local CF doctor the end of the week and by then they should have the culture results, so we will see if she will require I.V. antibiotics.

Please keep my sister, her husband, daughter and mother n law in your prayers.

Love and hugs to all and a great big thank you for all the prayers.

Birthday and stuff

2009-10-03T09:14:00.003-05:00

Cheyenne's birthday went great. Everyone had a fun time. Ciara sang "Jesus take the wheel" at church on Missionette Sunday. She did fantastic and received a standing ovation. There was not a dry eye in the sanctuary...not even the men!! Of course, I didn't get it video taped because I was doing the service that morning and didn't think I could tape it...I have got to get a tripod!!

Cheyenne was Baptised on Sept. 27Th. We are very proud of her.
Cheyenne had her 3 mo. visit with the endocrinologist on Tuesday. The injections she has been getting every 28 days for the last year, has not been working. The doctor is not comfortable with raising the dosage from 11.25 to 15 on a 9 yo, so she will be getting this shot every 21 days for the next three months and then he will see if it is starting to work, if not, she will have to be raised to the 15 anyway.

Ciara does have to have surgery on her hand/wrist. We go back on Wednesday to meet with the surgeon to see what he has to do and when he wants to do it...I just hope it doesn't interfere with Chey's Make a Wish trip...lol..but at the same time, I don't want Ciara in pain either...what is a mother to do?

We are still on track for St. Louis. We will leave on the 8Th as planned and not sure when we will return home.

Much love to all,
Debbie

Turning 9

2009-09-05T15:00:00.002-05:00

Cheyenne's birthday is two weeks away...I cant believe we have had her for almost 9 years. I need to get busy on the party planning!!

Cheyenne is coughing more and is showing signs of not feeling well. I will not say she is getting sick!!!

I finally made the appointment for her 2nd trip to St. Louis Childrens, to repeat the surgery she had July 1st, on her left main bronchus. It is for Oct. 9th...of course we have nothing arranged, nor do I know how it will work out this time.

Make a Wish has contacted me...her will is granted and is tentatively scheduled for November 1-7. I am really excited about..terrified she will be sick, but excited all the same.

In my last post, I asked for prayer for Xoey. When she went to the pediatrician a couple of weeks ago for routine shots, she noticed something with her heart that didnt sound right. She sent her for an EKG. The results show a whole in her heart. They are not sure right now what needs to be done. Please continue to pray for her.

Thanks for reading...please leave a comment so I know were here!!!

Time Flies

2009-08-27T12:17:00.003-05:00

I am so sorry it has taken me this long to post an update...let me fast track to today..lol...

Cheyenne and I did go to church camp..Ciara was able to go with us...I bet Satan wasnt happy about that. Ciara was chosen as Camper of the Year and gets free tuition for next year. Cheyenne had an awesome time.

We went for Cheyenne's monthly CF clinic visit on the 10th. She gained two kilos, PFT's went up 20% and he said she sounded beautiful. He also said she had a remarkable improvement and we dont have to see him until September. We have never been able to go two months between appointments and usually dont make it one month without some sort of contact with him or his office. We do still have to go back to St. Louis Children's the end of September for another surgery on her left main bronchus. The two week followup with her CF doc will coincide with her October clinic visit.

I am pleased to announce the birth of my newest nephew, Greyson Quinn...born 8/21/09. Both mom and baby are doing well. Big brother, Nathan, is very pleased too.Of course school has started and is going great.

Please be in prayer for my granddaugher, Xoey. I will update more about that later.

Sometime, well, most of the time

2009-07-11T21:12:00.004-05:00

the news just makes me sick to my stomach. Like tonight, I was in tears watching what satan is doing in this world. A young man set his girlfriend on fire...can you imagine her horror and pain. A baby was found dead in a daycare center...of course nobody knows what happened. And now, a swim club has caused controversy by not letting an inner city club of African American children and Hispanic children swim in their club. A mom charged in a suicide plot..which left two children dead.

There is alot of good in this world...just as I was sitting here in tears, reading my blogs...I run across this...I don't know how to post the video, so you will have to click on the link....please be sure to come back and let me know what you think....also let me know if it doesn't work.

http://www.youtube.com/watch?v=m_VknTKQQhw

Clinic follow up

2009-07-09T22:03:00.000-05:00

Cheyenne had a clinic appointment today. It is a toss up as to whether it was good or bad. I guess it was good and bad. Her lungs sound clear, dispite her terrible cough and fever. The culture that was done in St. Louis, is clear except for Alpha Hemolytic Strep, which the doctor said they wont treat right now. All of that is the good part. She has lost 4 pounds since our last visit, four weeks ago and her pft's are down 22%. He said and I quote "that could be because of the procedure or the infection, but I expect it to come back up some." He also changed her enzymes, we will see if that helps.
I hope everyone is doing well and enjoying what is left of summer vacation...do you realize how soon school starts? Many more days like we have had around here lately and I will say, not soon enough...lol.
Love and hugs,
Debbie

2009-07-02T00:19:00.002-05:00

Thank you to everyone that has been praying for Cheyenne and for the rest of us too. We arrived in St. Louis right on schedule. The flight here was great...absolutely beautiful. The water towers we passed over looked like golf tee's..of course I thought of Savannah.Some of the ground looked like my plowed fields on farmtown..lol..I am hooked. The landing was another matter all together. It was very rough, with alot of turbulance. It was so windy here when we landed, the pilot even said, he was scared for a little while...I am glad we didnt know that till we landed and was safely inside the airport..lol.

Cheyenne has been a real trooper through all of this. I know she is/was scared but, she was very brave about it. We did get blessed with a room at RMH. It is a great place, very beautiful old house.We met with the surgeon on Tuesday, did all the paperwork and pre-admission stuff. The doctor said, after looking at records I brought from home, that he was pretty sure he would have to place a stint, something he didnt want to do.

Tuesday night, we went to the St. Louis Cardinals game against the San Fransico Giants. It was a great experience for all of us. I love baseball and have always wanted to go to a major league game..of course, I wish it had been the Chicago Cubs, but oh well. Just in case anyone is wondering...no, we didnt use any of the money from our church. I was able to get some really cheap tickets online (thanks Heather) and I used some money I already had..lol..I would not have felt right doing it any other way.

We came in this morning for her surgery @ 9:30...now remember this is a child with Cystic Fibrosis..she eats almost constantly and she was unable to eat after 4am. They did not take her into surgery until 1:15. He did the bronch and ascertained that he didnt need to open her chest up, the blockage was opened enough for him to get his equipment in there where it was needed to be. That was an answer to prayer in itself...remember, it was blocked before. He was also able to open it up some more with the dilatation. He didnt have to place a stint. Another thing he had said before that we would have to come back every six weeks to have a dilatation on the bronchus..Today he said....every three MONTHS, another answer to prayer!!!! Chey was very full of "stuff", both in her lungs and her sinuses, and he/they were able to do a good clean out while in there. Cheyenne was in surgery/recovery for 2.5 hours and then brought up to her room. Guess what floor and wing it is....7 West...lol..but it is not just like our home hospital. She was desatting..just like she usually does after she is put under. She went down to 78% at one point, but it didnt last too long. She hovered around 89 for a while. She also experience several episodes of Tachicardia...that just about scared me to death...okay, I just exaggerated, but it did scare me. She didnt wake up totally until 8 pm..so she was without food and water/juice for 24 hours. She was starving, of course...so what is new about that? She is very gunky sounding now and coughing more, but they want her too anyway, so that is good.It has been a very long day and I am tired but I bet Cheyenne will not go to sleep anytime soon.I may meet a very special little family tomorrow...not sure if that is still on or not. I sure hope so but I understand if not.Take care everyone and I will update sometime tomorrow (now that I figured out how to get online..lol).

Love and hugs,Debbie

The Big Day!!!

2009-06-28T15:46:00.003-05:00

We leave for Missouri in the morning. The flight is all arranged..not sure what we will do once we get there...lol..but it will work out.

Our church presented us with a check for $500.00, PRAISE THE LORD!!!!, for travel expenses...talk about a humbling experience. I am so not used to being the recipient...I love my church family.

This picture is of Ciara right after she had her hair permed. For those of you that personally know Ciara, you know, her hair does not do this without a perm. I think she looks older than eleven...apparently so does a couple of boys that asked their my friend, the one that did her hair, how old she is...lol..funny and scary at the same time...they are in there mid teens. I told her, I have two baseball bats in my van.

I will update as I know things...love and hugs,

Debbie

Still no Problem

2009-06-27T10:18:00.004-05:00

I was on the phone FOREVER yesterday morning, back and forth between the insurance, local doctor and the doctor in STL. After two hours, I am not kidding, two hours later..it is settled. One hurdle cleared...if and when we get to STL, the medical stuff will be paid for..PRAISE THE LORD!!!I called the Grace Flight people too...they still hadnt found a pilot, call back between 330 and 4. I called at 4:05, they just found one, five minutes before I called...PRAISE THE LORD!!!. Another hurdle cleared.The pilot called last night to set up the time and location to meet up on Monday. We do not have to drive to Tulsa Intn'l, unless we want to, he suggested Davis Air Field, which is so much closer to us and we can park our car there for nothing...PRAISE THE LORD!!!He is a super sweet man. His wife will be his co-pilot. I cant wait to meet them. I thought we would arrive at the Spirit of St. Louis...really I thought that was the only option. I guess there is another airport on the west side in Cahokia (sp), Illinois. I am undecided as of now, if I am taking a hiatus from my computer while we are gone. Oh, who am I trying to kid? I have been making a mental list of things to pack, I guess I better make a hard copy. I used to be told, I had a memory like a sponge..now it is more like a steel trap...It goes in, but never comes back out alive.

Thank you all for your prayers.

Love and hugs,Debbie

BTW, Cheyenne long her last baby tooth yesterday and was suprised with $5.00 from the tooth fairy.

No Problem, yet....

2009-06-25T19:11:00.002-05:00

Today has not been a very good day. Health wise, Cheyenne is fairly stable...getting sick again (of course)...fever, increased cough and sputum production, sorry if TMI. She had a dental appointment this AM, as did Ciara and Kyle. The girls teeth are great, still no cavities... Kyle has two, that require fillings. The dentist said Cheyenne's teeth are great and she has one baby tooth left and it is loose. That cant be, my baby is not old enough to be baby tooth-less. That is not really the problem.I got a call from Grace Flights to confirm we are still going to STL on Monday, yes we are.She said okay, as of now, we still dont have a pilot. If you dont hear from us by tomorrow afternoon, call us back. Okay, I will. No problem.I got a call from the surgeon's scheduling nurse today, about 2:30. She said just to cover our bases, I needed to call the cf clinic and make sure they send a letter to the insurance office telling them he (cf doc) did in fact send us to STL. Okay, no problem. She said it was all arranged for payment to be made as the surgeon and hospital are contracted with the state of Oklahoma, they get patients from here all the time. They just need to have a hard copy in the file.Still no problem. I call the doctor's office to follow up about the letter to the insurance..supposedly, it has been taken care of, but she will check and if it hasnt, she will make sure it does. For those of you reading this that know who I am talking about, lol, still no problem. So I go about my business. I get a call at 5:15 pm, from the lady in STL that handles (or is supposed to) precertification for insurance payments. She said, she just got off of the phone with the insurance company, they will not make payment unless they have that letter in hand, prior to us going. She said, you need to call the doctor and have him take care of it..okay. I very calmly said, was supposed to be handled already, we are to leave Monday morning and it is after 5 pm on THURSDAY, I cant get it handled today. She said...well, honey just do what you can tomorrow, then.NOW WE HAVE A PROBLEM.I have been stressing out enough about how all of this is going to work and now this. And I am not even talking about what they are going to do to my baby. I will worry about that once we get there...if and when that happens.Sorry this turned into a vent instead of just FYI, type post..lolAs soon as I know what is going on, I will post about it.Love and hugs,Debbie

Five more days

2009-06-24T11:48:00.000-05:00

Until we leave for St. Louis. We are all nervous about it, but trusting in the Lord. We know He will take care of Cheyenne. It is the finances of the trip that we are having a hard time with..lol. We dont really know what will take place once we get there. We meet with the surgeon on the 30th and then surgery on the 1st. We wont know till we get there if we have a room at RMH. Wont know till Sunday, for sure, if we have a pilot that can take us...lol..no wonder I cant sleep..lol. Just wanted to update on everything...okay, only on some things.

Not happening like it should

2009-06-19T00:39:00.002-05:00

Things are just not falling into place like they should. I am still waiting to hear from the Angel Grace Flight people on whether or not they can take us to STL. We cant book the Ronald McDonald House until we know for sure when we will be arriving...we wont know that until we hear from the AGF people.
I know the Lord is in control of everything and it will all work out...I just need to remember to stay out of His way..lol.

Please pray for Stellan. He is back in the PICU and in SVT's. Pray for his family, also.

Love and hugs,
Debbie

Bright Ideas

2009-06-15T14:38:00.003-05:00

Sometime we all have "bright ideas", right? Ciara had a bright idea today. I wish it could happen and I am proud of her for thinking in this fashion.

She said she would like to build a time machine and go back to the very first day Adam and Eve were in the Garden of Eden. She would watch them closely and when the serpant tempted them, she would tell them what happened the first time they didnt heed God's warning and they would listen to her. She said, she wants to do that so there will not be any diseases and her sister wouldn't have Cystic Fibrosis, other kids wouldn't either. There would be no cancer, I would still have my sister and Miss Kim could bend her leg and she wouldnt have Alpha Thalassemia.

Somtime, my children make me cry...today, is one of those times.

2009-06-13T23:20:00.001-05:00

We finally have a date...I am glad and scared at the same time. We don't know for sure what will happen during this surgery...he is "going in" to do one thing but depending on what he finds, he may have to do the procedure the doctor in Mn. said not to do. STL doc doesn't want to do it, but it all depends on what has caused this problem in the first place.
My cousin Bradley is back in the hospital. Please pray for him, his parents and his twin brothers.Please continue to pray for baby S. I havent heard anything today, but yesterday he was placed on a vent.Love and hugs, Debbie

2009-06-11T23:33:00.000-05:00

I received a suprise call from the St. Louis surgeon himself today. We spoke at length, about 30 minutes actually. He told me all the pros and cons of going ahead with this surgery.One of which is...this is not a one time thing..if he is able to go ahead with it once he is in there..we will have to have it done several more times, as often as every six weeks. He feels that we need to move along quite quickly. I am to get a cd of all of Chey's xrays and ct scans from this year and call his office tomorrow to schedule it asap. So, as early as next week, we will be in St. Louis.Please be in prayer for Cheyenne. It has been suggested to me that we contact Angel Flights. Has anyone done this? I am not very good at asking for help, so I dont know.Please pray for a friend of mine's grandson..I will call him baby S. He was born two days ago and has been fighting for his life every since. As of tonight, he is having a chest tube placed because of a colapsed lung.
I will update tomorrow after I get up the courage to call Missouri.
Love and hugs,
Debbie

My legacy

2009-06-10T22:13:00.005-05:00

I thought I would share pictures of my children and grandchilren, some of them anyway.

Lexi is the first photo. She is such a joy..she keeps you on your toes.

Then comes Xoey. She is also a joy, but challenging...she has to have things very structured.

Kyle is right in the middle of all the girls. I think he secretly likes it that way...it also makes us realize just how "all boy" he really is.

My CheyChey is next. She is my girly girl...always has to have her hair fixed, lip gloss on and her clothes have to match..for that, I am thankfull.

Ciara is the polar opposite of her younger sister. She could care less if her hair is perfect or even if her clothes match.

Finally

2009-06-04T23:01:00.000-05:00

I spoke with the referral nurse in St. Louis this morning...yes they do perform the type of surgery Chey needs...yes they have performed it several times on children. She is supposed to be texting me with the numbers our local doc needs to call the St. Louis doc personnally and make the referral to get the ball rolling...there is a lot of red tape to get Chey's insurance to cover the medical expenses while in Missouri. I am not sure yet how we are going to cover the other expenses...lol.Chey had her weekly IV check. I never get to say this, so I am very excited about it.We had a great appointment. PFT's are up 8%...still a long way from her baseline, but up nonetheless. I got to tell him she has been fever free for 4 days...no cough for 3 days. He was very excited about St. Louis being able to do this surgery...the only thing that wasnt too great was the fact that dispite two weeks of IV antibiotics, she has a lot of puss in her right sinus cavity...he told me to do nasal rinses to hopefully, prevent it from going into her lungs, like always. He wants to see her in one month. He said, "lets see if you can make it that long". lolWe were able to go and enjoy (as much as you can with a 2 yo and a 3 yo running around) Cheyenne's softball game..she did awesome..aside from the fact that it is very hard for her to run with swollen ankles...good thing she is fast..she batted 3 times..she got 2 triples and 1 double, with 3 RBI's.After we got home from the game she was acting a little more weird than normal...lol...jk.. she is running a fever again, clearing her throat and starting to cough...HERE WE GO AGAIN.On a totally different note..please pray for my cousin's son. Bradley is 18 and had open heart surgery today. He is doing fairly well...it took a lot longer than they said.Happy Birthday, Savannah.Love and hugs,Debbie

Trying to fix my error

2009-06-04T17:08:00.001-05:00

This is a test of the emergency broadcasting service.

Musings

2009-06-01T10:28:00.002-05:00

I dont think anyone is even reading this blog...lol..but on the off chance that someone is..........I NEED BLOGGING HELP!!

Allergy testing

2009-05-27T22:31:00.001-05:00

I am very pleased to announce....Cheyenne isnt allergic to any of the 30 things tested for. While I am very happy about that, it leaves us without the answer we were looking for...lol..if you have been here, you know exactly what I mean. Update on the Minnesota trip...we still dont know if it is going to happen. I gave up on our doctor to "remember" to talk to the doc in Mn., so I emailed him myself...lol..he emailed me back and asked for my phone number...he called me this morning and we talked at length about Cheyenne's problems and possible solutions. The stint is a no go for sure, even in Mn. He said they have done it in Chicago in a child, but it didnt have favorable results. So, we will not be doing that. There is another option, but he doesnt know if she will be a candidate for it. At this point, we will do more investigating and make a decision soon as to what needs to be done. He asked if his phone number came up on caller I.D., it did...he told me to save it and if I had any questions, not to hesitate to call him. I thought that was very nice.We go back to the cf clinic on Friday for an IV check...I will update after that.Dont forget the Great Stride's walk is Saturday.Love and hugs,Debbie

2009-05-22T21:16:00.001-05:00

It seems like all I ever do when I come on here is complain...so I wont be starting off with complaints, let me say school is now out for us. Chey missed most of this semester but still managed to pass to the 3rd grade with floating colors..lol. We took her to the ENT on Wednesday...he said the CT Scan from the week before was clear, at this time she was starting to get sick...he decided he is doing allergy testing this coming Wednesday. She has been getting worse every day...last night she was really complaining about her ankles hurting and being swollen, so today I called and got her in for that and her cough/fever, etc...she has another sinus infection...we were just told two days ago "her sinuses are just fine". Obviously, they are not....the ankle problem is her arthritis getting worse..I knew this but wanted something to help her...she was right when she told me he wouldnt do anything about it...he did put her back on IV's for everything else though..he remembered she is not responsive to orals and didnt make us wait through the two courses of them. So, we are doing IV's exactly two weeks after stopping them...arghh...so it continues in the lives of the Longs...lol.Cathy, do you make up those cute little things yourself? They are adorable and really help to bring a smile to a not so happy kind of day..thanks.Love and hugs to all...Debbie

2009-05-12T21:03:00.000-05:00

Hi everyone...well we went back to the clinic on Monday...doc was supposed to have info for us about Minnesota, but no, he didnt...he still hasnt called them...now he wants to wait till after the sinus surgery. We should find something out about that tomorrow, we see the ENT at 3:00.Her PFT's are unchanged overall from last time (10 days ago) but he did go ahead and discontinue the IV antibiotics....he sent us for chest xrays..for the first time in I dont know how long, they are clear, no infection, just the normal CF stuff...Praise the Lord for that.

I had to make another ER trip last night...with Ciara this time. She had a fight with the trampoline and she didnt win. After waiting for 5 hours, she is sporting a temporary cast..aka a hard splint. We will follow up with the ped doc on Thursday and see what she wants to do.

Has anyone heard of FRED on youtube? He has to be the most annoying kid in the world...I cant stand him...he talks like he has been sucking helium.I will try and update tomorrow after we see the ENT.Night everyone...take care,Debbie

Happy Mother's Day

2009-05-10T20:38:00.002-05:00

I often think of my daughters birthmothers, but I think of them more at holidays, especially today. I wrote the following for my youngest daughter's bmom but today I would like to post if for both of our bmoms.

A Mother’s Love

When you found out about me,at first, you could not believe it.But when reality finally hit,you knew what you had to do.When your plans for me were finished,and the Lord's time was right, I was born.The doctor cut the cord that tied us together,and I became my own little person.When I was placed in my new mommy's arm's,her love for me burst forth.That love was matched only with one other love,her love for you, for your unselfish act of love for me,You and I will never be tied together by life's cord again,but by love's cord, which is much stronger andstands the test of time.So when you think of me,don't think of me with sadness, think of me with pride.Because of your love for me,I don't have just one mommy,I have two.
May 24, 2001(I wrote this for my daughter's bmom when she was eight months old)
© 2001 Debbie Long

Update

2009-04-24T12:30:00.001-05:00

We are going home (supposedly), sometime today. Much to Cheyenne's dismay, they just hung another 2 hr. abx..so, not for a while yet.We came in with the intentions of IV antibiotics (which we are doing), sinus surgery consult and surgery, while inside...and a consult for lung surgery of some sort, depending on what could be done the easiest and provide the longest relief for Chey.

We did see the ENT and she was supposed to have sinus surgery on Wednesday..didnt happen because her platelets were too low and she is anemic.The other doctor never came in but did talk to our doctor several times about how to proceed. We found out on Thursday, the easiest, fastest surgery is out of the question for two reasons. 1) they dont do that here. 2) they dont ever do it on an eight year old.

They did PFT's yesterday and it showed she is down another 9 points from last Friday...while on 2 iv abx for most of that time...argh. I feel like this "visit", didn't accomplish anything for her other than, she has not ran a fever in several days, so that is good. This visit for me, did allow me to become better aquainted with Julie...I really enjoyed spending time with you, Julie...thanks for keeping me sane, or at least the same as I was when I came in here.

Thank you everyone for your prayers...they are more than welcomed and much appreciated.

Cheyenne update

2009-04-19T22:57:00.000-05:00

We are kind of getting somewhere now...at least we have a tentative plan. Tomorrow an adult pulmo is supposed to come and give a second opinion, third really. The other two (doctors) are not sure if her left lung can be repaired at this point.

BTW, I could use some blogging tips...how do I add something to my "sidebars?".

Hospital stay

2009-04-18T20:34:00.000-05:00

We are settled, sort of....Cheyenne is not feeling well at all..everything is kind of crazy here...lost orders, missing doctors...as in they cant get them to call back..blood was drawn after two tries, then clotted and now has to be redrawn....xrays taken (that was fine), then on to CT...wait, cant do it--no IV, port not accessed...argh. Now the nurse said she doesnt think they are starting any antibiotics tonight....then why did we have to come in today? I dont know either.So...daddy is on his way and will be very mad when he fines out about all this.Thanks for reading..nighty nite,Debbie

Latest Dr visit

2009-04-14T09:10:00.000-05:00

Monday, April 13, 2009 10:07 PM, CDT
I called the cf clinic this morning since Cheyenne is still having all of the same symptoms...fever, increased cough, rattle/wheeze, throat clearing, loss of appetite...plus headaches. He wanted to see her, so off we went. She has lost the 14 pounds (jk..the 1.4 pounds) from last weeks gain and there is a marked decrease in her pft's. He said her sinuses are back to very nasty, she has bronchitis and he can really hear her stenosis.
He is making two referals...the first one is to a pediatric surgeon here in Tulsa, to see if he can come up with something else to stop/slow down the progression of her lung deterioration.
The second one is to an ENT for possible sinus surgery.
On the way home, Cheyenne was being her usual funny self. We were talking about Radio Disney. She asked if they had that when I was a kid...I said no, they didnt even have Disney Channel yet...she says (and she was serious, mind you)...
Oh yea, they didnt even make cars then, right?
I hope you all got as big of a laugh out of that as I did.. she is too funny. I think she knew I needed to laugh or I would cry.
I will let you all know when the appointments are...please keep praying for her.