A Year Without the Hospital

I'm working hard to change the way I think. 

Over the past few years, I have come to think of my daughter as a "mostly sick kid with times of health." The fact that my daughter, Jaycee, has been in the hospital 2-5 times a year for the past several years has contributed to that line of thinking. Besides the hospital admissions for pneumonia or respiratory infections, there were plenty of illnesses in which Jaycee was intensely treated at home. After years of challenges, I am happy to report that things are finally changing for the better. 

If you have been following this blog for awhile, you know the complexities of Jaycee's health. If you don't, this might be a good background read for you. The repeated respiratory infections have been devastating for Jaycee's quality of life, and it's been distressing for the rest of her family. That led to us taking Jaycee to Mayo Clinic for a third opinion on her lungs last year. 

By August 2019, Mayo Clinic had a plan in place for Jaycee's sick lungs after extensive testing. The main changes were:

-taking an antibiotic 3 times a week 

-adding in two new nebulizer medications to use daily

-increasing the settings on her vest airway clearance machine

-and obtaining a cough assist machine to be used daily.

In addition, we were given a different plan of attack whenever Jaycee did get a respiratory illness. It was more aggressive but necessary given the state of her lungs. 

Once we started her new intervention plan, I was cautiously optimistic. The team felt Jaycee would do well and promised a new, healthier future. I wasn't sure that it was even possible. I saw her has a "sick" child. I wanted the good health to be true, but it was hard to be believe things could be different. I had been promised good health before by other professionals. I had been let down in the past, so I was reluctant to simply trust that this plan would work. 

A few months into the new treatment plan, Jaycee's health seemed to be stable. Hope started to grow inside of me. Keep in mind that I had years of watching my child turn blue, be rushed to the ER, and suddenly need oxygen. These past experiences had me torn between believing for a better future and being scared that at any time things could fall apart. 

In the fall, Jaycee made it through an illness at home. It was an intense few days of treatments, but she recovered without going into the hospital. It was the reassurance that I was looking for. However, I kept saying, "Let's see if she gets through cold and flu season." That would be the real test. 

My reluctance was keeping me from believing better things for her. At church one Sunday, our pastor started encouraging us to pray for things that only God could change. He encouraged us to pray for the impossible, believe in miracles, and stretch our faith. I know this should be common knowledge as a Christian, but it's easy to let past hurts affect your prayer life. It was simply a challenge to pray in faith for areas that seemed like they were never going to get better. In that moment, I knew God was speaking to me through my pastor. It was the words I needed to hear. It was time to get beyond the traumas, fear of being let down again, and past experiences and simply cling to hope and faith that things could be better. 

In November, we rejoiced that we were able to celebrate Thanksgiving at home with our families. The previous two Thanksgivings were spent in the hospital. Being home for that holiday was surpassing a huge hurdle in my mind! 

December and January passed with no illnesses. Those were two months that were notoriously hard for Jaycee. I was grateful again that things were improving! The longer she went on her healthy streak, the more confident I became. 

In February, we all came down with a cold right as we headed out for a Disney vacation. Jaycee either got a mild version of our cold or had a small reaction to being in a different environment. Either way, the medications and machines did their job, and she was able to fight off her illness on vacation. 

Since then, Jaycee has been in near perfect health. She's had a few, small changes in her breathing this spring, which happens during allergy season, but her lungs quickly responded to the medications. If there's been any good to the COVID-19 stay-at-home orders that shut my state down for almost 2 months, it's that we went no where to get a germ or a cold virus. She has stayed remarkably healthy over the past few months. But, when there's no church, school, or social events, there's a better chance of staying well. 

Last month, I started counting down the days that would mark the 1 year anniversary of her last hospital admission. We marked the date with a prayer of thanksgiving and recognition of how much life has changed in the past year. I had zero faith that this was possible a year ago. It really feels like a miracle. 

Now that we've reached the one year mark, I feel it is time to consider my daughter as a "mostly healthy kid with times of illnesses." I'm starting to make this strange transition. It's been wonderful to view my child differently but also see how much better her quality of life can be. 

Having a year off from the hospital has meant that we have had a bit of reprieve from many things. There's less absences for illnesses, less time off of work for illnesses, fewer medical bills, less stress, and fewer disruptions in our life. I'm grateful for the way things worked out and for answered prayers. 

Still, an impossible question is in my mind. Can she make it two years without a hospital admission? We'll find out...

When a Loved One is on a Ventilator

In any form of media now, it is common to hear talk of ventilators with the COVID-19 pandemic happening. I have heard stories of COVID-19 patients needing ventilators, hospitals demanding more ventilators, and the race to make more to fill the demand. Ventilators aren't some foreign concept to me, and the frequent mention of them is giving me unpleasant flashbacks.

Perhaps, you have never seen a person on a ventilator. Maybe everything you know about ventilators was observed on Grey's Anatomy. I can tell you that, from my family's experience, nothing can prepare you for the reality of it.

Twice my daughter, Jaycee, has needed ventilator support for a common cold virus called the rhinovirus. Jaycee is medically complex and her multitude of lung and heart problems often result in her needing support in the hospital for illlnesses that others can fight off at home.

Back in 2013, Jaycee was admitted to the ICU for breathing difficulties and pneumonia related to that pesky virus. I remember everything about the night she was placed on a ventilator. She was rocking back and forth in bed, hyped up from multiple breathing treatments, when I implored her to go to sleep after settling into our hospital room around midnight. A few hours later, everything changed suddenly, and I was regretting that my last conversation with Jaycee was begging her to go to sleep.

Jaycee went into septic shock and was later diagnosed with ARDS. She went from needing some oxygen upon admission to needing the ventilator quickly. For 3 weeks, I watched my 7-year-old child breathe with a ventilator.

In 2015, the rhinovirus again created havoc in her lungs and a less sudden need for a ventilator occurred. For a week or so, I sat beside my 9-year-old daughter listening to the hum of the machine breathe in and out for Jaycee.

I am not an expert on ventilators, but I will tell you about what I observed as the mother of a patient from these two events.

I was not prepared for everything that came with the ventilator. Jaycee was sedated while she was intubated. One reason for the sedation was that it prevented her from trying to pull out her breathing tube. With her sedated, we found ourselves in a weird mode where she was there but not really there. We talked to her, reassured her, played music, played her favorite tv shows, and held her hand when she was stable, but it was hard to know what she understood, processed, or heard. Tubes did all of the major work of her body while she slept. There were tubes and wires everywhere! It was a sight that was hard to take in and see.

Then there was the noise from the ventilator. It set me on edge all day and night long. The ventilator wasn't a quiet machine that's portrayed on television. It's noisy. It had a constant hum as it inhaled and exhaled for Jaycee. It alarmed frequently for a few different reasons. If she coughed, I jumped at the alarm it produced. Coughing also typically meant she needed to be suctioned. I hated the sound of the suction and the cough that happened as a result. It makes me cringe thinking about it now. Perhaps, it wouldn't bother anyone else, but it was something that I hated hearing and watching. 

The idea of Jaycee being on a ventilator was simply scary too. In other illnesses, Jaycee had been on oxygen, high-flow nasal cannula, and c-pap support for oxygenation needs. The ventilator is the final stop on the oxygen train. To me, it was worrisome that there was nothing left after the ventilator. In the 2013 event, Jaycee was on the highest support on the ventilator and not sustaining good numbers at different points. Other things were eventually tried (like positioning her on her belly, adding nitric oxide, etc.) which eventually led to improvements. It's scary to see someone struggle to breathe and know that there's nothing else that can be done. 

As for Jaycee, I don't know what the experience was like for her. With her limited communication skills, I don't know what she was feeling or thinking during those times or what she remembers. I know there were moments of discomfort and sadness judging from her body language and tears. 

For her sake, I hope she doesn't remember any of it. I hate to go back to those memories. They aren't pleasant. With all the talk of ventilators lately, I have found myself revisiting some of those memories. I feel for all the people needing them right now and their families. It's not an easy thing to live through. 

There are many opinions out there right now regarding what the public can do to stop the spread of COVID-19. I don't know what you should do, but I know without a doubt what I should do. I never want to see anyone I love on a ventilator again. Therefore, if there are some things I can do to put the odds in our favor, I will gladly do them. 

Be safe out there!

Our Time at Mayo Clinic

I'm not sure where to begin the story of the events that led up to my daughter being seen at Mayo Clinic in Minnesota for a third opinion. Jaycee has experienced more health scares and illnesses to properly be summarized in a short paragraph. If you are my friend in real life or follow my blog on Facebook, you have some sort of perspective on her situation. If not, may I suggest you read the following posts for some background:

Living in ICU

Your Worst Thing

The Two Versions of a Hospital Stay

or for the full story, check out my book Badges of Motherhood. 

The recent frustrations with Jaycee's health began in the fall of last year. Jaycee had a couple of hospital admissions close together. One was for a fairly bad pneumonia. When discharged to home, she didn't bounce back. Her recovery was long, slow, and stressful. In January of this year, she ended up in the hospital back-to-back. By the second admission, they discovered she had RSV and an "atypical" pneumonia. Again, her recovery was long and slow. There were other illnesses besides these that didn't require the hospital, but intense home interventions were needed to keep her breathing stable.

By spring, Jaycee met with a couple of her specialists who were concerned with her respiratory infections. Numerous immunology tests were completed for the third time in her life. Nothing spectacular was found. Again. At the end of the tests and appointments, the best recommendation was for Jaycee to start monthly asthmatic shots though nothing in her blood work indicated it would be helpful.

When my husband and I received the call regarding Jaycee's tests and recommendation, we were exacerbated. There was no answer for the respiratory infections. We were given little hope that things would improve because we were given no rhyme nor reason why she was getting sick repeatedly and recovering so slowly.

"Sometimes, I think we should just take Jaycee to Mayo Clinic," I said to my husband after the call.

My husband asked, "Well, why don't we?"

"I don't know how you get into Mayo Clinic. Is she bad enough to go? We've already had a second opinion. Does she need a third?"

My husband responded, "It's worth checking into. What have we got to lose?"

Thus we began a quick look online to discover that anyone can call Mayo Clinic and request an appointment. The next day that's what I did. There were two paths to receiving appointments. We could pick a specialist to see and discuss Jaycee's problems and concerns. This would be quicker option. Another route would be to see a diagnostic team. We opted to schedule with a Pulmonologist knowing she could be referred to a diagnostic team if deemed appropriate.

Some weeks later, we made the nearly 9 hour drive to Minnesota. When we took our first steps inside Mayo Clinic, we were in awe of the look and feel of the hospital. Mayo Clinic is known for helping the most complex cases, and there seemed to be a dose of hope somehow contained in the building. Our nerves grew as we waited for Jaycee's time with the Pulmonologist and a Respiratory Therapist. We discussed Jaycee's medical issues for 90 minutes. We were relieved to hear they were more than interested in evaluating Jaycee with a team of other doctors at a subsequent appointment.

"We've seen many sick children like your daughter. We will figure this out," the Pulmonologist promised. It was a confident statement, especially when others have tried and failed.

Roughly six weeks later, my mom and I arrived at Mayo with Jaycee for a comprehensive evaluation. Over the next 4 days, we met with several doctors and hospital personnel for clinic appointments or tests. Everyone was interested in helping Jaycee get to a healthier state with her lungs. Most of the team members devoted ample time to her appointments, which is something I rarely encounter anymore. Jaycee had many tests completed, but the team was always considerate of Jaycee's tolerance and stress. Jaycee wasn't the only one they were concerned about.

During one of the appointments, a professional looked at Jaycee's long list of illnesses and surgeries. She stopped and asked me, "How have you coped with all of these hospital admissions?"

Only a couple of people in my daughter's medical team have ever asked me that question. I felt this place saw the complete picture. This wasn't about pneumonias, medications, and hospital admissions. It is really about giving Jaycee a better life. In turn, it would change my life, my husband's life, and my son's life. Her illnesses affect us all in different ways. I felt someone "got" it.

Jaycee drawing some pictures waiting to be called back. 

Between our appointments, we had time to explore the hospital. We marveled at some amazing statues and art scattered all over their campus. As we walked hallways and tunnels to get to the parking garage, we passed a series of paintings by Andy Warhol. At times, I didn't know if I was in a hospital or a museum. The waiting areas weren't sterile boring areas with lines of chairs. It was more like a hotel lobby and, therefore, more relaxing.

In the main lobby, a piano was often being played by a skilled musician. Once, there was a beautiful voice belting out a hymnal that drenched the listeners in an overwhelming sense of peace. For a second, I forgot we were in a hospital and would soon be hearing news about my daughter's future health.

The entire town had a special feeling about it. I am guessing that most people visiting Rochester are there for Mayo Clinic. People in wheelchairs, wearing bandages, or carrying Mayo papers around were commonplace outside the hospital. There was an air of understanding in the whole town that many people were here searching for answers or enduring some health battle. You think it would feel depressing, but it was actually the opposite. It reminded me of our time at Give Kids the World Village on Jaycee's Make-A-Wish trip. It was a community of people who understood your journey even if they knew nothing about it.

Then the long awaited moment happened. The team at Mayo explained to me while my daughter suddenly turns blue when she's sick. They described why she gets repeated respiratory infections and why she doesn't recover quickly. I don't want to get into the technicalities of it all here, but there were three new problems identified with her lungs/airways. It was a relief and a disappointment all rolled into one conversation. We have seen multiple specialists over the years, and none of them have provided these exact answers. Before this trip, I had decided we probably wouldn't receive answers again, but, much to my surprise, they came with thorough explanations and pictures. Everything suddenly made sense. There are options available to treat her new diagnoses, but there's no magic fix. The best thing for her is to stay well, which seems like an impossible feat given her history.

As we have settled back into our routine at home, I am left with a mix of emotions. The path to Mayo began with a spur of the moment conversation between my husband and I. It was a discussion that seemed God inspired because it was so random. Because of that, I want to believe that our trip to Mayo Clinic will lead to better things for Jaycee. I am grateful for answers and hopeful they can help my child.

For now, Jaycee will start new treatments, await medical equipment approval from our insurance, and pray those lungs keep breathing well every day.

I Have Nothing Cute to Say

The previous few weeks have been hard.

I'm a fairly positive person, but the past hospital admission with Jaycee has made things tough. (If you missed my last post, you can read more about the hospital stay here.) Seven days of watching your child endure pain, fight for breath, and lay in a bed in the ICU will wear on you as a parent. Then add three more days of care in the pulmonary unit where your child fights diaper changers with all her might, struggles to keep food down, and looks so sad to be in the hospital. It's hard in so many ways. I wish my daughter's health wasn't so fragile.

Jaycee sleeping with her Beast doll on continuous bi-pap in ICU

As I said in my last post, we are no strangers to the hospital or ICU. The familiarity with all of it is exhausting. I sat in the hospital and thought, "Not again! This can't be happening again!" But it was. We were warned back in 2013 that once you need a ventilator during an illness, you tend to fall harder and need more support for relatively common illnesses later on. Jaycee was almost expected to become a repeat ICU patient and that has been what she has become. Jaycee has been in the ICU every year since then for a cold virus or pneumonia or some other lung issue.

My first thought when we arrived home was, "How many times can this happen to my daughter? Is her life and ours ever going to have normalcy without hospitals?" Obviously, no one at the hospital believes it will be. "See ya next time," some of them said to us as we walked out the door. Hope not, but it has been the case for some time now.

This year alone I have accompanied Jaycee on an ambulance three times while she was transported to a Children's hospital for care. Twice the transports were for respiratory illnesses that resulted in hospital admissions. One was for the hemorrhage at home after her oral-pharyngeal surgery. That surgery, by the way, was excruciating for Jaycee for over a month. This year has had its ups and downs for sure.

As a writer, I try to share our life stories as well as how I cope in these situations. But this week, I can't find the silver lining. I have no cute story that's inspirational. I have no moment of revelation that happened in the hospital. My power of positivity is not here. I could tell you how Santa visited her in the ICU and how Jaycee has watched the video a dozen times since with happiness. But, I could also tell you it really stunk to hold Jaycee down to be suctioned several times. The bad outweighed the good as far as I can tell.

If there's something positive to say, it's this: I know there is still a God. I know God is working in my daughter someway and somehow because she is still here even though she has several health conditions that don't put things in her favor. And, I certainly love her dearly.

That's why all of this hurts so much sometimes. It hurts to see her in pain and sick and looking at me with those eyes like I should be protecting her from the nurses who must stick and poke and prod. I hate it for her, because I love her so much. Even when I felt like running out of her room when she was in the hospital because I didn't want to watch her in pain and struggle, I stayed. I held her hand. I put on her favorite movie.

I dug down deep in those moments and found something cute to say to her.

Superstitions I Developed as a Parent -Special Needs Edition

Superstitions range in topics and subject matter. From the number 13 to pennies, there are some common beliefs about things that will bring either bad or good luck or will result in a particular behavior or action.

As I listened to a television show joke about the origins of some well-known superstitions, I thought, "I don't believe in that stuff."

Then I got to thinking.  Maybe I do. While I have no problems opening umbrellas inside of buildings or stepping on cracks, I do have a couple of parenting superstitions that I apparently follow. Here's a few of them.

-Don't talk about a healthy streak; you will jinx it!
My sweet Jaycee has struggled with a variety of health conditions including 2 different heart conditions, obstructive sleep apnea, asthma, lung cyst, recurrent pneumonias, and GERD. The most dangerous thing for Jaycee is a simple cold. She has been admitted to the hospital multiple times for a cold that escalated to respiratory distress. Not every cold sends her to the hospital, but these require me to monitor her closely at home. The times of illness are scary, stressful, and unpredictable.

The times that are healthy are wonderful. I do not have to look at monitors or thermometers or consult her doctors. I don't have to worry about my daughter or analyze her breathing. We can go outside. We can plan activities and actually do them.

When the healthy days turn into weeks and months, I have come to believe that it is better to not make note of it. As soon as I declare happiness because of a 6 month healthy streak, it is sure to end. Then, the countdown will have to start all over again.

So a superstition I seemed to have developed is that I try not to talk too much about healthy streaks. Each day without sickness is appreciated and does not go unnoticed even though I do not formally draw attention to it.

-Always bring extra clothes to prevent an accident.
My daughter has been toilet trained for several years. However, she does have an occasional accident that is mostly related to her medical traumas. Sometimes just pulling into the hospital parking garage will result in her getting nervous and having an accident. Clearly the hospital triggers something emotional in her and for good reason!

It seems that every time I take her bag of extra clothes for that just in case moment, we don't need it. If I suspect that a test, blood draw, x-ray, or doctor will give cause to necessitate "the bag," I rarely seem to use it. If I forget the bag or proclaim that we won't need it, then Jaycee is bound to have a problem that I didn't foresee. Then, I am left with a mess to deal with and a bag that is not conveniently near us.

My mantra lately has become, "Let's take the bag with us, so we won't need it." The presence of the bag seems to prevent the need for it, and she's generally accident free when the bag is with us.

Sadly, I have started believing this superstition is true.



-Giving up on a skill sometimes helps it develop.
I am not sure how many times I have become too focused on Jaycee developing a particular skill. I get disappointed or frustrated that despite both of our best efforts, the skill just hasn't been mastered. Then, I give up. I don't stop all my efforts necessarily, but I submit to the fact that the skill is not going to happen any time soon. Then, it does!

When Jaycee was in pre-school, I wanted her to write her name so badly. We practiced tracing the letters in her name, used methods from Hand Writing Without Tears, and reinforced writing during outside chalk play. Fine motor has always been a challenging area for Jaycee, and handwriting proved to be hard. Despite all of our handwriting practice, she could not write any letter in her name after months of practice.

Then, I gave up. I decided Jaycee may never learn to write her name, and I may have to be okay with that. Shortly after, Jaycee "signed in" on our name page on a home school day due to illness when she was 5 years old, and I could actually make out some letters in her name. I did a double take. I couldn't believe it, but there it was. There were approximations of every letter in her name. I could tell that she tried. Hope was restored!

It appears sometimes giving up on a skill becomes the catalyst for the skill to come. Maybe time passes quicker when mastering a skill isn't the main focus. Whatever the reason, I seem to believe that skills happen when I quit trying so hard with Jaycee.


These are some of my superstitions I have developed as a mother of a child with special and medical needs. Do you have any?

2016: My Year To Be Pessimistic (Realistic)

This year, I'm making a change. I'm giving up on some of my optimism.

I have realized that being positive over the past few years has actually set me up for failure. When it comes to Jaycee's medical needs, my hope that she might get better and improve has set me up for one disappointment after another.

Let's go back to when Jaycee was a year old and the word "asthma" was spoken over her. No big deal was my initial response. It will get better. Every person who told me of a friend or family member who grew out of asthma just fueled my positive thinking that Jaycee would no doubt be just fine one day.

Every time her fingers turn blue or her breathing goes into the red zone on her asthma chart, I get upset that Jaycee's life is still threatened by asthma. Today, Jaycee is almost 10 years old. She's still taking daily inhalers, wheezes when she gets a simple cold, and is still impacted by asthma.

Then there's Jaycee's c-pap use. At age 3 she was diagnosed with obstructive sleep apnea that was not corrected after having her tonsils and adenoids removed. The first few years Jaycee was on the c-pap were extremely frustrating as we tried to get Jaycee adjusted to wearing it. My hope and prayer was always that Jaycee would improve and no longer need to use the machine. It limits her ability to sleep over at family members homes and prevents her from sleeping where she wants in the house (or in the car).

Over the years, Jaycee has switched to a bi-pap and her latest sleep study indicated the need for even higher settings. After years of worsening sleep studies, I have relented to the fact that this machine is forever a part of our lives.

Fifteen months ago, I started giving Jaycee a weekly bleach bath (or a swim in a chlorine pool) as part of her treatment to control a staph infection on her body. What I figured would just be a temporary addition to our routine is still there.

One last example, Jaycee started vest airway clearance in the fall of 2013 to treat her lung cyst, recurrent pneumonia, and poor cough reflex. She has used it twice daily (or more) since then. I was given a hopeful speech that perhaps if Jaycee stayed pneumonia free for a desired amount of time, then her vest treatments could be reduced or decreased significantly. I optimistically looked forward to the day when this happened, telling myself that this was just a temporary device Jaycee would need. Yet, the vest airway clearance treatments have not changed a bit since they began.


I want Jaycee to be healthy. I want Jaycee to have as few of medications and daily interventions as possible. I want there to be a day when I don't have to worry about her health. I want her life not to be threatened by a silly cold virus. I want her immune system to work properly. And if I could never, ever see her in a hospital bed again, then wow!! That would be something!!

But, I think I have been setting myself up for disappointment after disappointment by wishing for a cure or a fix for things that may never be. Perhaps, I have always looked at every intervention as "temporary" because it was the only way I could cope. Like, if I thought the c-pap was forever in our home when it came in at age 3, I would have just been too overwhelmed at the time. Sometimes, I feel like I walk a dangerous line between having faith that things will get better and being in complete denial.

When I put a time table in my mind as a possible end point for this or that which come and go with no change, I tend to get upset and wonder when life will be easier and less restrictive for Jaycee. I hate putting her through so much medicine and doctors. I just want her to be healthier.

I suppose I have decided to approach things differently this year. I am not expecting anything to change this year. I have decided that the 11 medications, twice daily vest treatments, daily nebulizer treatments, bi-pap machine, and weekly bleach bath will just be factored in to this entire year. I will still hope and pray for Jaycee to get better, but I refuse to be depressed or disappointed when these things are still apart of our life next year.

Perhaps instead of saying this is my year to be pessimistic, I'll just say I'm going to be realistic about Jaycee while I pray for her best. Whether things change or not, I will appreciate the life God has given us this year.