The Klein's

Life is too short to wake up in the morning with regrets, so love the people who treat you right, forget about the ones who don't, and believe that everything happens for a reason. If you get a chance, take it. If it changes your life, let it. Nobody said life would be easy, they just promised it would be worth it. – Harvey Mackay

I’m a firm believer that if you go to the doctor enough they are going to find things wrong with you.  I think that is why people with chronic illness sometimes end up with some many different diagnosis.  Not because they are out there looking for things to be wrong with them, but just because we probably all have minor things wrong with us that we ignore or dont cause big issues.  But if you dig deep enough, or you have enough little/big things, it all piles into misery. That is sort of what has happened with this latest diagnosis, and why I want to talk about the parent/patients responsibility in paying attention.

If your doctor or hospital offers patient portals to your medical records do it!  I know there are a lot of concerns out there about privacy.  So let’s be honest.  Your records are already electronic.  They are out there, yes they can be hacked, and that is a risk that exists in today’s world.  You are simply getting access to what already exists when you use the portal.  We’ve used the online portal for a couple of years now, and use it for connecting with doctors and nurses, reviewing results, and asking for prescription refills.  I’m a fan.

Lexi had surgery two weeks ago now, and just with the nature of cystic fibrosis results will come trailing in for about six weeks.  Over the course of the last sixteen years, with asthma and CF, Lexi has had A LOT of x-rays.  The chest x-rays are always ordered to check her lungs, and the doctors ordering them are always looking at them from a respiratory view.  There are always notes comparing the lungs from one x-ray to another and calling out areas of concern.  But one of the other things that the x-ray sees, that the radiologist looks at is the spine.  I’ve been looking at her results, and because she does have trapped air and is culturing some things, I have been reading each line item a little closer.  That is when I saw this…

scolScoliosis.  So I found that a little bit alarming.  Alarming maybe isn’t the right word.  Surprising maybe.  No doctor has ever mentioned it to us, and it was just there, in the comments, no other notes.  Thanks to the portal I was then able to start to go back through her other x-rays.  Sure enough another radiologist noted a dextroconvexity thoracolumbar spine.  In most of the x-rays I reviewed there were notes about the spine.  Dr. Google was next on my radar (not a picture of Lexi’s spine)…

scoli

So I have to say this is one of the disadvantages of a portal.  Sometimes you are going to find out bad news before the doctor has a chance to call you.  I have seen bad test results in the portal, uploaded by a lab on a Sunday afternoon, and not had the doctor call me until Monday.  So if you are an alarmist looking at test results might not be what’s best for you.  Sometimes it might be really bad news.  If you are going to immediately go to Dr. Google and be convinced that you are going to die from a hang nail then don’t get access.  Obviously I’m making light of this with humor, but seriously sometimes the results aren’t great.  But I have faith that if it is ever something really bad someone is going to escalate it and I would get a call before I’d read about it.  So, if Lexi has a curve in her spine, she has always had a curve in her spine, and me knowing about it doesn’t change things at all.

But knowledge is power so what next?  One of the (many) downfalls of having a child with chronic illness, is that you just don’t always make it to those pediatrician well visits.  Lexi hasn’t had a well visit in years.  She goes to doctors and clinics on a regular schedule.  If she gets any infection we call the CF clinic.  We don’t call a family doctor.  So the normal things, like let me check your spine, that a pediatrician would do have been missed. That is how this was missed.  I’m sure other doctors probably saw this note, and someone just assumed that someone had talked to us about it.

I did message Lexi’s pediatrician, through the portal, and she pulled up the radiologist notes for the x-rays I pointed her towards.  Lexi’s pediatrician is awesome.  It takes a smart doctor to stick with a complex kid.  She met Lexi in the hospital the day after Lexi was born.  Lexi’s pediatrician didn’t miss this.  It just happened.  She saw the notes that I was talking about, and absolutely validated that I was reading everything the right way.  She is going to request actual copies of the x-ray so that she can see the curve, and then decide if we need to do a scoliosis scan.  We will know more next week.  Brooklyn has a well visit with her next Friday, so a good time to follow-up (and yes we will check Bs spine for straightness).

In the greater scheme of things why spend time on this new information?  It could explain a couple of things that we could get some quality of life improvements from.  Lexi’s grandma had a spinal fusion for scoliosis in her 20s.  No, I don’t anticipate Lexi’s back is anywhere near bad like that, because surely it would have raised some flags.  But, clearly there is a family history.  Lexi has always complained of back pain.  We’ve dismissed this because let’s be honest she coughs ALL THE TIME!  When anyone coughs that much, and has GI issues, they can have some core and back pain.

Today Lexi had physical therapy, and with this new information her PT did a scoliosis exam.  Different then anything she’s done before because she focused on her back.  Positive note, she did confirm that Lexi’s hips are in alignment.  Negative note, she said that her back was all knots.  But this is good news, because now we know some new techniques that Lexi can use to try and start loosening those muscles.  While Lexi did some heat therapy, and stretching, her PT and I picked out a heat massager that I can get for home to help with the tightness.  And Lexi starts back twice per week to PT next week, so good timing all around.  Here are the two items that I ordered with the PTs recommendation.  Unsure of which Lexi will like the most, but wanted something that would work larger areas.  I can return one or both if she doesn’t find benefit.

This one currently on sale 63% off:
Heating Pad for Neck and Shoulders – Heat Wrap with Adjustable Heated Levels & Vibration Massage for Neck and Shoulder Back Pain Relief, Heating Pad with Auto Shut Off

This one is a bit pricey:
INTEY Neck & Back Massager, Kneading Rolling Shiatsu Massage Seat with 12 Nodes, Massage Chair Pad with 4 Functional Areas: Neck, Full Back, Seat Virbration, Heat (Extra Bonus: 1 Car Adapter)

So what does Lexi think about all this?  VALIDATED!  She says she knew her back shouldn’t hurt like that.  She’s only 16.  Mom fail.  She complained a lot, and we did the old fashioned “suck it up buttercup.”  Yes, in our house we say “suck it up buttercup.”  It is a really nice way to say stop complaining, and teenagers complain a lot!  I will admit though that now she is complaining about her back constantly.  Human nature to focus on something after people have talked about it being “wrong.”  The mean mom in me might have told her that it doesn’t hurt more now then it did two days ago, so to just stop complaining.  She told me to give her a week to whine about it and she’d move on.  Compromise?  No, I’m not a mean mom, but I do think sometimes if your dealt a crappy hand you can’t spend your life complaining.  You have to figure out how to maneuver through the life you have.  Even if that is really hard sometimes.

As Lexi’s parent it is my job to look at her health collectively.  I have to understand, and teach her, that each specialist that she goes to is looking at her from their lens.  The lens of what they specialize in.  It would be wonderful to trust one doctor to have a full awareness of the entire complexity of a person with chronic illness, but I don’t think it’s realistic.  Our cystic fibrosis care teams try, and spend a lot of time with us.  Pediatricians see our kids, but they see thousands of kids.  We see our kids everyday.  We have to take on the accountability of educating ourselves, keeping ourselves informed, and asking questions.  We have that responsibility when taking care of ourselves, and when looking after those in our care.  We also have to give ourselves a little bit of grace when we drop the ball here or there.  We are only human, and complex things are by definition complicated.

Thanks for reading.  Thanks for following.

-Sandy

 

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You know it’s easier to have a bad day then a good day?  Especially on a Monday.   How many of us go into Monday thinking it’s going to be a bad day.  I have a few good friends that have amazing attitudes and approch each day by jumping up, working out, and maintaining a positive day.  I am not that person.  I don’t hit the snooze button because I hate mornings so much that snooze time is stealing real sleep time.  I don’t like to talk to other humans in the morning.  Of course one of the great jokes of the universe is my very talkative, very happy, morning person husband.  I get annoyed when the Starbucks barista wants to make small talk while I wait for my coffee.  I mean I am seriously not a morning person.

attitude

But a lot of the time I have mastered the art of faking it.  Why?  Because I believe that my bad day is not your bad day.  I have no right to project my negativity on the world.  (Unless of course you are my husband or best friends, and well then you just know me and I’m sorry for those days and am glad you love me anyway!).  I honestly think that you have to make a conscious effort to have a good attitude.  Some days I flood my stories with clipart quotes, because I’m trying to consciously remind myself to check my attitude.  Clipart isn’t going to change my perspective on the day, but the simple act of googling for quotes does help me take just a moment to put some focus on an area that I need to work on.  If I post them they are there as a reminder to check on my focus throughout the day, and who knows, maybe they help someone else who is struggling in that area.  My neighbor ends almost everyday by posting inspirational messages.  Do I look at them everyday?  No, but if it’s a bad day I can always depend on the fact that if I go to her page there will be a positive perspective there.

If you read our blogs regularly, or follow us on social media, you know life has been a bit tough recently.  That is important for you to know, because I always imagine people writing about attitude have these perfect happy lives.  For some people that might be true.  Lexi was waking from surgery on Thursday, and the nurse was nagging her to drink apple juice.  Lexi was having a really hard time in recovery, and finally yelled at the nurse, “fine I’ll drink it if you just shut up!”  Adam and I both said oh no you stop.  The nurse was like oh it’s ok.  Yes, Lexi was still under the influcence of several sedation drugs, and was absolutely not herself.   But we reminded her in that moment that the nurse was doing her job, and that it was never ok to talk to someone else like that.  I’m a firm believer that if you make a conscious effort to stay respectful, and not transfer your negativity to someone else, then in the moments where it might be almost subconscious to do so, that your subconscious will be trained to check itself.

I have teenagers now, but when they were younger “sucks” was a bad word.  But anytime they had a medical procedure, or were really sick, they were allowed to say “this sucks” or “that sucked.”  But we taught them that it would never be ok to tell someone “you suck.”  I try to teach my kids that their bad day isn’t someone elses bad day.  We each are going through something, and it’s not fair to expect the other person to take on the negativity of your bad day.  I think that is where attitude become so important, because attitude is what we are giving the world.  I also am not shy in reminding friends and family when their attitude is impacting other people.  I’m sure this isn’t always welcomed, but I think we all need self reflection.  We have to understand that what we give the world impacts everyone around us.  We have the power to ruin the day of our kids and spouse.  We have the power to become the friend and coworker that people try and avoid.  Who wants to be around someone who is constantly projecting negativity on the world?

I’ve been reading a book on Attitude by Mark Nepo.  Many people make lists of the things that they need to do everyday.  The list of all they hope to accomplish.  Good for you if those help you, they just give me a bad attitude.  Seriously!  I get depressed looking at lists like that.  I don’t even make a grocery list.  I’m way better off just checking boxes in my mind of what I know I need to do.  All of us are different.  What works for you won’t work for me.  I’m much better served by making lists at the end of the day of the positive things that have happened.  Making a list of those things that brought me gratitude that day.

It’s important for me to do this at the end of each day, because I am an internalizer.  I will lay awake at night for hours worrying over all of the bad things in my life, and not give a second thought to the good.  I have found that by ending the day with the positive, it can help me relax and sleep.  Some days are just bad.  Some days no gratitude list will take me out of my own head, but it can’t do harm.  We have to stay grateful for the good things and good people in our lives.  Sometimes we have to look for things to be grateful for, but I firmly believe that you will ALWAYS find something in your day to be grateful for.  If you can’t, well you weren’t looking hard enough.

Some things that I am grateful for over the last week that I’ve taken notice of.  These are things that uplifted my spirit, or made me feel loved and valued.  Or that may have just been dumb luck, but I’m grateful for it.

  • A friend delivering Costco pumpkin pie and Starbucks to my house on a Sunday Morning.
  • Friends texting my daughter silly, distracting things at 5am as we drove her to surgery.
  • Random scriptures texted to me the night before and day of surgery.
  • My mother in law and husband going to a friends high school play so that I didn’t have to be upset that our family wasn’t represented.
  • The sweet lady at the hospital gift shop that complimented my blessed mamma shirt, the one Lexi had me wear that day.
  • Our doctor was the oncall doctor this weekend.
  • My husband telling me after a stressful day, to take some time to myself to write.

These are all just little simple acts of kindness from others that we can overlook if we aren’t paying attention.  They can be so powerful in helping to uplift us if we take the time and make noticing them a priority.  Every minute you spend focusing on the positive is less time to look at the negative.

I want to challenge you.  Take out your phone and in your notes app create a gratitude page.  Everytime something your grateful for happens make a note.  Was there something you otherwise would have overlooked or forgotten that made you smile when you look back at your list?

November 1st I’m going to start the journal “Good Days Start with Gratitude.” November is the thankful month, so it seems like a good time to start I’d love it if you want to grab a copy and join me.  It’s a $7 Amazon investment in keeping my life in perspective, and remembering that I have a lot to be grateful for.  I have included a link in our menu to the book Attitudes of Gratitude.  I’ll also include a link in the menu to the gratitude journal, or you can grab your copy here:

Good Days Start With Gratitude: A 52 Week Guide To Cultivate An Attitude Of Gratitude: Gratitude Journal

Don’t worry if you stumble upon this blog late.  You can join on this journey anytime.  I hope you’ll join me in trying to hold myself accountable to remaining grateful during difficult times.  If this is an area that you struggle in we can all help encourage one another.  Also, remember to give yourself some grace, because some days are just going to suck.  Like right now, as I type this on Sunday Afternoon, when the Blu-ray player is trying to eat the Redbox Lion King Movie.  Bad things are just going to happen that we absolutely arent grateful for!

We appreciate your support by following our family here and on instagram.

– Sandy

Disclaimer:  We are registered as an Amazon Affiliate.  As an Amazon Associate I earn from qualifying purchases.  

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!

CFF facts

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.

Thank you for following us and for liking our posts, as it helps support our family.

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

 

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