What has been going on...

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.