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

Post Op

Today wasn’t what we thought it would be, or hoped it would be, but first Lexi is ok. Lexi is home (I’ll get to that), and we are thankful for her doctors.

I’ll just start at the start of the day, since this is a surgery day blog. Feel free to jump ahead. We left our house today at 4:45am. Lexi got up fairly easily, considering she only slept about three hours. Adam probably slept about five hours. I slept maybe three hours.

Terrible 4am photo! #reallife #nofilter

Lexi had three different doctors scheduled for today. If you’ve never had surgery, never had multiple doctor surgery, or never had surgery as a CF patient, I am going to go through her preop.

1. So if your a CF patient your on precautions all the time. Basically that means everyone that comes talk to you has on a mask, gown and gloves. It looks like you must have the plague, but really they are protecting you from the germs of every other person they’ve come into contact with. #itsnotmeitsyou There was another girl with CF having procedures today.

2. Things that make you go hmmm… The anesthesiologist comes in all gowned up, and goes over all the breathing things. When the patient has breathing issues, this is a very important conversation. As she is preparing to leave, and is removing her gown and gloves, she says, “we waste so much money on these, you would think we could just reuse them.” Hmmm doesn’t that defeat the purpose?

3. “Organized” Chaos. When you have surgery the doctors come in and talk to you before they get started. Unfortunately GI and Pulmonology didn’t get the memo to come early. So surgery started about 30 minutes late, as the nurses frantically worked to get the other doctors down to talk to us. At which point there was a line of doctors and nurses outside the door. Funniest moment was when GI started to come in the room, ungowned, and the pulmonologist literally blocked her from entering. Yep, she turned around and grabbed a gown.

There she goes. #surgerytime #seethebunny

4. As parents, we aren’t unfamiliar with having our kids in surgery. We don’t like other family to come. We don’t bring the sister. We want to give all our attention to that daughter. We also don’t talk to each other during surgery. He reads and I play some mindless iPad game. We are together but silent. It works for us. Short surgeries or long surgeries it’s always the same routine.

5. ENT – Perfection! No polyps. Vocal cord appropriately reactive. All things all good.

6. Pulmonology – We changed up Lexi’s Meds about 5 weeks ago. The doctor said it would take about a month to see the full effects of the changes. Lexi has been off oral steroids for about three weeks. The inflation in her lungs appears to have settled down. That’s really good news. Lexi’s left lung is her worse lung. Particularly that lower left lobe. The doctor was able to clear out all the mucus from the lungs, and said things looked good when she was done. Biopsy results will be received starting in a week, and can take up to six weeks as they really see what might grow. We see the Doctor December 6th. She will have another CTScan and we will hopefully see that everything that’s been done has released the trapped air in her lungs. If not she will probably need to begin injections.

7. GI – First let me say that I love our GI doctor. She has treated the girls for 13 years. She ordered the tests that led to Lexi’s CF diagnosis. She coordinates discussions with many of our specialists. We’ve cried together, celebrated together, her son is Lexi’s age. We just love her. Lexi has has a Nissen Fundoplication, and has acidic, motility and GI reflex issues. She has a complex GI system, and because of privacy we won’t go into much more detail.

The GI doctor came out and began to show us photos of Lexi’s prior stomach surgery, and her phone rang. For the first time in all our surgeries, our doctor was being called back into the operating room because of our child having a complication. Yes, my stomach dropped. It was about 45 more minutes before anyone came to get us, and I’ll admit I was sick to my stomach. Then they called us back, and said “the nurses want to prepare you that she still has her breathing tube in. Yep, stomach drop times 2.

I’m struggling with how much to share, because privacy is important. Lexi suffers from Hyperesthesia. We don’t talk about this, because it’s one of those hard to understand, people get judgy things. No judgy please. Judgy people go away.

Hyperesthesia basically means that Lexi can feel, very specifically, and not necessarily painfully, what happens inside her body. For example, Lexi can point to where the screw is in her arm, and actually outline the screw perfectly without an X-ray. Lexi can point to exactly where the trapped air is in her lungs. She doesn’t necessarily understand what it is she feels, but without ever seeing the CT Scan can tell you. It’s impossible for you to understand if you don’t experience it. Honestly I never knew a condition like this exists, but our GI and orthopedic doctors take it very seriously. Judging? Doubting? Judgy doubters go away.

You have to know that to understand the next piece. So during her GI Procedure a probe was placed to monitor GI symptoms, and it meant she had a tube down her nose. So even under sedation her body was recognizing this tube as a foreign object and her stomach was contracting to try and push it out of her stomach. She began having spasms. It was downhill from there. Physically and emotionally the following hour was very difficult. Extremely elevated heart rate, low oxygen, multiple nurses, doctor, all the things. The doctor decided that the risk outweighed the benefits. The tube was removed, and it took about two hours for Lexi to stabilize.

After mom, dad, Lexi, nurse, and doctor tears we all decided to cancel the other tests that she was being admitted for. Her body needed to rest. Once Lexi could maintain her oxygen at 93 we brought her home.

We have no miracle answers. We will need to wait for all the cultures and biopsies to come back. She did get her lungs cleared out. The doctors were able to observe and document her drops in oxygen. The doctors told us that each piece of information tells the story, and for now we just have to wait. Her oxygen needs couldn’t tolerate any more stress to her body today.

Thank you for your prayers. Keep praying.

Home. Sleeping.

Yesterday was rough. For me the days leading up to the kids having surgery are some of the hardest.

I find myself unable to sleep or concentrate. Yesterday I was supposed to work a full day, but at noon I signed out for the week. It wasn’t just about focus. It was also about patience. I just don’t have patience for all the little nonsense that comes up in the day. Or the, although well intended, comments people make or advice people try to give. To add a little humor here are some of the best things I’ve directly been told or read.

1. “I had bronchitis once, so I understand what Lexi goes through.”

2. “Your kids problem is that you believe in God.” (Social media troll)

3. “My cousin found a miracle drug that cured their herpes. Maybe it could cure cystic fibrosis too.” (This person has sent me this message three times.”

4. “Your kid just wants attention. She could cure herself.” (Social media troll.)

5. Vaping causes cystic fibrosis. (Online news article.)

Normally I can just roll with it, but not presurgery. Presurgery I let myself get into online debates about the benefits vs harm of being able to modify genetic code. Yep that happened yesterday. Presurgery I have zero patience for people who create their own perceived trauma, like chronic illness is a competition?!

We live in two realities. In one we move along, do our day to day, and pretend our lives are normal. In the other every decision, every thought, is consumed by health concerns. The normal side usually wins. It’s where I remind myself to ensure we are living our best life. It’s where I repeat grateful, thankful, and blessed as to if trying to burn it into my subconscious. The darker side allows frustration to creep in. It’s where the words grateful and thankful are harder to speak, but where I forcefully remind myself that we are.

We are surrounded everyday by a world that mostly only sees the normal. The people we work with that know of CF but not the impacts. Even family that avoid the topic, because they really don’t understand or know what to say. The dreaded “she doesn’t look sick.” Or my favorite, never been madder in my life, “I showed her picture to a doctor, and he said she doesn’t look like she has CF.” Lexi is not pancreatic insufficient true, but that isn’t a requirement you know?

Lat night Advil PM was my friend. I went to sleep at 8pm. Hoping for a really good nights sleep, before we are in surgery mode. Today I’ll hospital pack, for a planned one night stay, but I’ll pack for three just in case. Last time 3 nights became 7 and my poor neighbor was at my house hunting nightgowns for Lexi. We will make sure all the laundry is done, and put fresh sheets on the beds. I’m going to teach Lexi to make lasagna (her requested dinner) to pass the time. I may take Brooklyn to the doctor if she’s still super congested, as she will spend the next couple of days with Grandma and Grandpa.

Tomorrow morning I’ll get up before 4 (if I sleep) and place the Nebulizer mask on Lexi. She needs 30 minutes of treatments before we head to the hospital. Timing treatments with surgery is important because of her lungs. Normally we don’t do sleeping treatments, but I’d rather have her asleep then anxious. We will leave the house at 4:30ish to make the drive to the children’s hospital, and checkin time of 5:30.

I’m sad because of the routine of it all. I don’t have to make a list or worry about what to pack. I know what meds the hospital pharmacy will have trouble finding, and I’ll have those labeled meds handy. I know to take a sheet for Lexi’s hospital bed, because hospital sheets make her itchy. I know to have two detailed lists of prescriptions and treatment schedule. One for preop and one for the floor nurse. I know if admitted to the 4th floor to ask if Nurse Hannah is working.

I pray you never have to have such a routine, or be sad because you honestly can’t remember how many times your child’s been sedated. But if you have a friend with a special child, and they always seem to have it all together, give them a hug. There is probably another view of their story that they aren’t letting you see.

💜 Sandy

Some blogs you think do I really want to write it?  A couple of weeks ago I read a social media post wanting everyone to know why they should not get their flu shot.  Honestly, I haven’t been able to let it go.  I’ve spent a lot of time thinking about that post.  When I’m refilling my daughter’s medicine I think about it.  When I’m pounding on my daughters back several times a day I think about it.  I find it interesting that most of the people I see warn me not to vaccinate have completely healthy families.  Go ahead and comment that’s because they don’t vaccinate, but I’m going to just reply whatever.  As much hate as you want to send me for sharing my opinion is not going to make one bit if difference to me.  Not one.  Not this time.  You see I had an allergic reaction to a vaccine when I was a child, I ended up in the hospital, and I still vaccinated my kids.  I am not a bad parent.  I am not a bad person.  I understand the odds of them being injured from the disease were greater then the odds of them being injured by the vaccine.

I had pneumonia and bronchitis together last winter.  Let me tell you it sucked.  My biggest fear?  Giving it to my kid.  My chest hurt, I was out of breath, and I was exhausted.  It was a good reminder for me of what Lexi feels like a lot of the time.  Before anyone wants to lecture me about not vaccinating, let me tell you about my daughter’s lungs.

CF Lungs

Lexi has cystic fibrosis.  The inside of her body has a sticky mucus, and that mucus likes to settle in the lungs.  Twice a day she is supposed to wear a vest to literally shake the mucus out of her lungs.  She inhales sodium chloride to try and make the mucus thinner.  She takes nebulizer treatments to change the consistency of the mucus.  Every three months the mucus is tested to make sure that there isn’t bacteria in it.  You see that mucus likes to attract little germs, and once they settle they don’t like to leave.  Sometimes they stay for years, and often they require a minimum two week hospitalization for IV meds to try and kill the bugs.  Over time those lungs get tired of all the mucus and bugs and they simply fail.

xray

My daughter also has asthma.  Only 10% of CF patients have asthma, so managing the two together isn’t actually a perfect science.  Imagine, take a set of CF lungs, and squeeze them shut.  That’s what asthma does.  It tightens and restricts the lungs, and doesn’t let the air move.  Now imagine as those lungs squeeze, and they are full of mucus.

trapped air

My daughter is one of the 5 to 10% of people who’s asthma doesn’t respond to typical treatments.  Over time she has developed trapped air.  Before my child I didn’t even know that such a thing could happen.  Her bronchial tubes have tightened so much that air is now trapped in her alveoli.  Along with that air we can assume thick, sticky, cystic fibrosis related mucus.  Next week my daughter has surgery.  She will have an ENT for her sinuses and her vocal cords,  She will have a GI doctor for her esophagus disease.  She will have a pulmonologist who will go deep in her lungs, try and make sure there are no hidden germs, and try to open up those trapped airways.  She will be admitted to the hospital, and have to stay overnight, because of her history of post surgical respiratory distress.  Last time she had a surgery her 3 day stay ended up being 7 days.

I shared all of this not for your sympathy.  No, please, we are living our best possible life, and we know that God’s got this.  I share this because I don’t want people around my daughter who haven’t been vaccinated.  It’s plain and simple.  So today I want to focus on one point that people who don’t vaccinate themselves or their children often make, and that is they wouldn’t go around others if they are sick.

From Seattle Children’s Hospital – https://www.seattlechildrens.org/conditions/a-z/infection-exposure-questions/

disease 1disease 2disease 3disease 4disease 5

I only want to focus on the flu.  I added everything else, because often when you talk about vaccines, those other three come up a lot in discussion.  Since I figure someone will message me about the others, I would just go ahead and throw them up there.

Have you ever started the day feeling fabulous and then as the day went on began to feel run down?

Have you ever sent your kid to school perfectly happy and seemingly healthy, only to have the school call you at noon and your kid has a fever?

school nurseI have.  On both those counts.  More then once.  I’m guessing if your honest you have too.

My point?  Of course you would never get my chronically ill child sick on purpose.  The whole reason you don’t do vaccines is because you believe that your keeping yourself or your kids healthy.  I have no desire to get into the people who vaccinate are evil vs people who don’t vaccinate are evil battles that happen online.  I want to give you something to think about, and if you know my family personally ask you to stay away if you haven’t had the FLU shot this year and were around someone at work or school or anywhere that might have possibly been sick.  Because the FLU has a 1-2 day incubation period.

So here is the most recent data on vaccines that I could find…

vaccines

… and here are some other facts you might be interested in.

odds

I am guessing that you may have driven in a car sometime this week.  If you didn’t ride in a car you probably lived somewhere that you could walk to where you needed to be.  My point?  Living is dangerous, but we live.  Cars are dangerous, but we drive cars.  People can give me statistics about how harmful vaccines are, and I can give statistics about how harmful life is.  Are we going to change each others mind?  Nope, probably not.

If your kid gets the FLU they are going to get sick.  They might even get really sick and end up in the hospital.  If your child gets the FLU shot maybe by some slim chance they would have a minor reaction, but they are more likely to be hurt in a car accident on the way to get the shot then be hurt by the shot.  It’s just a fact.  A statistical fact.

If my child gets the FLU she will immediately be admitted to the hospital.  Why?  Because all those statistics about people who die from the FLU are usually people like my daughter.  She will have to start an immediate around the clock respiratory protocol to keep her from being a real statistic.  That statistic people hear about on the news, and think oh that’s so sad.  The statistic about the number of people who died that year from the FLU.

There are no laws here that say you have to vaccinate your kid.  So you don’t have to.  No one can make you.  You get to make your own decisions.  Just do me a favor, and please avoid my family and consider the incubation period.  You might not know your sick when you see us.  You might not know that you’ll start coughing or sneezing or running a fever while your here for dinner.  So please don’t risk my child just in case it happens.  Please don’t tell me that I’m being ridiculous because statistically you probably won’t get sick while your here.  That same statistical argument you give to me will be countered with the statistical risk that an unvaccinated person could bring harm to my daughter.  We are both going to use statistics for our own benefit to “win” our arguments, just as most people do in this situation.

I’m going to say that I know there is no vaccine that is 100% safe or effective.  So many things go into that.  But I’m going to get the shot and accept that sometimes the simple act of being alive is dangerous.  I’m going to do what I can to protect my family, while living the best possible life possible.

If you know us, and you love us, or even just like us, I’m simply asking you to do the same.  Please help me protect my family.  Let’s not argue about vaccinating, because no one every changes anyone’s opinion on that one.  It just leads to a lot of angry people, and my request is simply made out of love.  The love of a mom to protect her family.

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