It seems like all of my fears going into this surgery have slowly been realized. We feared that Lexi could not tolerate the GI procedure that they were going to do, and we were right. We feared that Lexi would have some oxygen issues post surgery, and we were right. We feared complications would appear after, and here we are. We are tired and frustrated, and Lexi feels like crap. It’s a difficult night to feel positive.
Lexi was very sore yesterday, but overall seemed to be doing ok. She fights coming out of sedation, had some reactions to the procedures, and her body felt like it had fought a war. She also bit her tongue yesterday when she was coming out of sedation, and has an ugly sore at the tip of her tongue that hurts. Yesterday the achy body, and the sore tongue were her biggest complaints. At bedtime last night Adam and I were talking about getting her out for a walk today, and I was making her take care of the dishes already. That’s the thing the parent of a child with chronic illness has to balance. It’s teaching a child, that will become an adult, that you still have obligations if you don’t feel good. Because these kids are never realistically going to feel great at a level you or I might. So they have to learn that, and parents have to give tough love sometime.
Today she has progressively gotten worse. She hasn’t necessarily complained more, but the frequency of her cough has become constant. This morning she began coughing up some bloody mucus. Nothing like being out shopping with a friend and getting a picture texted to you of blood on a towel. She was just waking when I had left the house, and wasn’t really showing any new symptoms, so I was surprised to get her text. Just small amounts and nothing that alarmed me. She didn’t call or anything, she has coughed up bloody mucus before, so it wasn’t anything that upset her. I did come home, but figured it was just something we would monitor. As the day progressed she started to get a croup cough, and that has since turned into a wet cough. Lexi has always had a problem with croup. It’s sent her to the hospital urgent care more then any other symptom. It’s unusual for someone her age to have reoccuring croup, as it’s always associated with little kids. Another example we have of how common conditions become big problems for someone with lung disease. Lexi’s body temperature usually “runs a little cool” and she rarely ever, even when very sick, runs a fever. But for the last two days she has had a low grade fever. This can be normal post any surgery, but symptoms just kept adding up. So after talking to Adam, and consulting with some trusted CF friends, I called the emergency number for our CF Clinic.
Link to our prior surgery post in case you missed it: Surgery Day ENT Pulmonology GI
Our CF clinic is at Phoenix Children’s Hospital. She did have procedures from three specialists, and her actual hospital complications were a result of a GI trigger, but my instincts said we needed pulmonology. At our clinic you call the emergency number and say “my daughter has cystic fibrosis, and I need to speak to the on call doctor.” They transfer you directly to the doctor. No call backs, no waiting, you get immediate help. Definitely blessed with how our clinic handles after hours, and double blessed that it was Lexi’s doctor who was on call. I have heard that many CF clinics are not as patient focused.
The doctor said we were right to call and pulled up the lab status of Lexi’s cultures. I always appreciate when the doctor reaffirms that we’ve done the right thing. You know what its like to call a doctor after hours and feel like you are bugging them. Or get an on call nurse that really doesn’t have any idea what your talking about. So I’m grateful for our doctor. Lexi’s cultures showed positive for parainfluenza virus, and is also growing staph. The doctor was surprised to already see the staph, and said it was too early to tell what type of staph. She will check the labs again tomorrow, and call me if anything really alarming starts to show up, otherwise she will call me Monday. The doctor reminded me that different bacteria they look for can take up to 6 weeks to show growth in the cultures. She ordered an initial course of antibiotics to start right away to try and get ahead of things, but anticipates we will need to add more as the cultures continue to grow. Since Lexi is symptomatic, and has had a significant reduction in FEV1 recently, this could be an explanation. The lower left lung is where the trapped air has been in her lungs, and where the primary mucus was found on Thursday. So the staph could have been buried there too deep for Lexi to cough up in prior cultures. Because staph is an ongoing issue for many CF patients, how it is treated is often dependent on the type of staph, and the symptoms that the person is experiencing. Right now Lexi has a really bad sore throat as she is coughing continuously, and I’m guessing as a result of everything being stirred up in her lungs.
One of the biggest fears that CF patients and parents have going into any culture is what might grow. The mucus rich enviroment of CF lungs mean that it is an optimal home for bacteria and germs to dig in and live for years. Even becoming antibiotic resistant. In a prior blog I wrote about the importance of getting a flu shot, Go Get Your FLU Shot!
Something that might make you really sick for a week or so, can be life threatening for a person with lung disease. I beg you to keep this in mind when thinking about simple things like flu shots, not sending a sick kid to school, staying home from work when sick, and washing your hands. You literally could be saving someone’s life. There are germs that CF patients can get, that due to the mucus in their lungs, they simply never get rid of. Germs that they live with their entire lives once they have them. This has a significant impact in progression of disease. Clean cultures are critical in maintaining overall health for a CF patient, and for maintaining a good quality of life.
Thank you for following our story, and for your support. I will continue to update our friends, family, and supporters on Lexi’s health We appreciate your prayers, and are thankful for this community.
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If you are interested in learning more I have included links below.
Learn about CF and Germs: CF and Germs
Learn more here about staph and CF – Long Term Staph Infections
Parainfluenza Virus – CDC information