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...

How Life Has Somewhat Prepared Me for This

We are finishing up our 5th week of home isolation due to stay at home orders from COVID-19. Like millions of other people, nothing about my daily life looks like it did prior to this. Still, there are aspects of it that I can relate to from previous experiences.

Having a child with special and medical needs, I have endured situations that most people have not. My daughter has a list of diagnoses that have resulted in several surgeries and over thirty hospital admissions of varying lengths.

Today, I'll share three aspects of this crisis that I have been somewhat prepared for because of my life with my daughter.

1. Going Without Pay
Presently, my husband and I are both home and not working. (I'm working about 3 hours a week from home. Does that even count?) This is definitely an odd situation when neither of us have our regular income, but we've lived through other financial woes.

In the course of our 17 year marriage, we have had plenty of months when my husband was unemployed due to the nature of his job being seasonal. There have been a couple of times when I've went months without pay during a state budget crisis. We both have jobs in which there is no paid time off. That means every time one or both of us were in the hospital with my daughter over the years, income was not being earned. In 2013, we both spent an entire month at the hospital when she was fighting for her life. We both had no income for an entire month. These are just some of the examples that we have navigated together.

The rough financial times are trying. It's stressful to figure out how to pay the bills when the income isn't as much as usual. However, we have learned how to grocery shop on the cheaper side and make every dollar count. In addition, we know the importance of saving up in the better times for the shortages that happen during the harder times.

Don't get me wrong, we have had some struggles. I've went to the grocery store before with $30 trying to figure out what I could scrape together for meals. Sometimes, a lot of things hit at once (i.e. a car breaks down while you're unemployed and you receive an unexpected medical bill), and it can be simply overwhelming.

The main thing we have discovered in our times without our regular income is that somehow things always worked out for us. We give credit to God for helping us meet our needs. Did I mention prayer is a good thing to do? Going without our regular pay is never easy, but we've done it before. We can do it again during this COVID-19 crisis.

2. Plans that are Canceled
It is disappointing to cancel plans, especially when the decision is out of your hands. Due to my daughter's numerous illnesses, we have had to miss and cancel dozens and dozens of plans both big and small. Because of her health, we tend to hold our breath whenever we plan anything and hope we get to do it. It never gets easy. The disappointment is often met with tears and sadness.

In the past, we have canceled a family camping trip to Branson due to a hospital stay. I've missed school events for my son because my daughter's illness prevented me from attending. Our family has spent two Thanksgivings, a Father's Day, a birthday or two, and other minor holidays in the hospital. Those days looked nothing like we wanted, but the important thing was my daughter's recovery.

It stinks when your schedule has to be changed or plans seems up in the air. I know; I have been there multiple times. Still, I don't like it. Sometimes, I grieved over what we couldn't do, and that's okay. What I have figured out is that my perspective changes years later. The disappointment isn't as strong, and we have learned to make memories in the good times.

Today, I am reminding myself of these things as I am frustrated by the restrictions in life, my inability to plan, and my work changing. I try to tell myself that I won't always feel this way, and my family's safety is the most important thing.

3. Virus Anxiety
I have a healthy respect for viruses. I know what they can do to my child, and I know I need to avoid them if possible. Sometimes, my respect isn't healthy and I become very fearful. When your child has ended up on a ventilator from a common cold virus not once but twice, you end up being a bit fearful of germs. Germs are a real threat to my daughter's lungs.

That threat causes me to react differently when I know certain viruses are in our community. I find ways to avoid shaking hands with people at church. I don't take my daughter out to public places or grocery stores in an effort to decrease her risks. When we do go somewhere, we use hand sanitizer often. We may stay home for days or weeks, especially if my daughter is recovering from an illness. We adjust our lives to minimize the risks.

I'm really no more fearful of this virus than I am of any other virus. I understand the severity of this one, but all viruses are a threat to my daughter. However, I'm not use to hearing about a germ with such fear from the general population. I don't suppose most people have worried about a germ so much. Not me; this has been a normal part of my life for years. I have had to find balance though when trying live a life and minimizing our risks for my daughter. There does need to be balance, and decisions cannot be based upon fear. I've had years to sort this out!


Even though there are some aspects of this pandemic that are strangely familiar, there are plenty of things that are not. I won't pretend that I was prepared emotionally and mentally for this whole thing, because that wouldn't be true. I have struggled some days with my emotions and stress. It is reassuring to know that our family has ended up fine in any crisis we have lived through. That gives me hope for the future.

I pray this post gives you some sense of what families like mine go through multiple times a year. More importantly, when all this ends, I pray you'll remember people like us, understand our decisions, appreciate our struggles a little bit more, and reach out to offer help. Be safe!!

I Listened to God and Didn't Yell at a Doctor

I formulated a plan without even realizing it.

It all started a few months ago. My daughter, Jaycee, and I ventured off to Mayo Clinic for a third (and final) opinion of her respiratory issues. We were blessed to get answers we were seeking for years. Her multiple pneumonias and respiratory infections that have required hospital admissions every few months were explained. The episodes of her suddenly turning blue and needing emergency intervention now had a reason. I was relieved to get answers, and I was grateful for the doctors who provided such stellar expertise.

What was I to do about her regular pulmonologist who had been treating Jaycee for years? My daughter was a complex case; there's no denying that. Many eyes had looked at her, and none had come to the conclusions that Mayo Clinic did. In some respects, I see how things were missed. Still, Jaycee's regular pulmonologist didn't always seem on top of her case.

"It wasn't that bad," the pulmonologist commented once after three long weeks in the ICU on a ventilator. I'll never forget that statement as it showed the doctor was disconnected to our reality. It was bad, and I'm not sure why the doctor didn't see it. We depended on this doctor for guidance and help, and I often felt I needed to explain why such help was needed.

Other times, the doctor was properly concerned with the frequency of illnesses. Tests were ran (sometimes the same ones) a few different times over the years. Nothing significant was found to explain her problems. Medications were tried with little to no effect. When a second opinion elsewhere provided little change in Jaycee's health, the good doctor told us, "Jaycee is just going to get sick."

I have reasons for being frustrated with this doctor, as you can tell. Armed with a CT scan, multiple test reports, and pictures from scopes that displayed several "new" problems identified at Mayo Clinic, I contemplated my next move with Jaycee's pulmonologist.

I daydreamed about entering the office with my pile of medical reports and a smug face. I fantasized about telling the doctor about things that were missed, important tests that were never ran, and diagnoses that were never caught. I pictured myself asking the doctor why certain things were never considered. I imagined a heated discussion where I yelled about past issues concerning improper medical care and how Jaycee suffered through multiple hospital admissions as a result.

Of course, this was all in my imagination. I rarely yell at anyone in real life (though maybe my husband would have a different opinion 😊), so the odds of this actually happening were slim. Yet, I found my frustrations growing with the pulmonologist the more I pondered everything.

As my mind supplied me with varying scenarios with the good doctor, I got a nudge from God. Early one morning before my thoughts went haywire, God reminded me of an important aspect of Jesus in the Bible. Jesus was ridiculed before his death. People questioned his authority and divinity. They mocked him, and spoke blasphemously. His treatment was unquestionably horrendous.

When Jesus arose, he didn't come back to show the unbelievers who he was. He came back for his disciples. Jesus revealed himself to the people who loved him. He didn't go to Jewish people at the synagogue, the high priest, or Pilate for an "I told you so" moment. Against our human reasoning, Jesus didn't visit his accusers to show them their error. Jesus supported those who already believed.

Obviously, I am in no way trying to compare our situation to that of Jesus. However, I do believe there's wisdom we can glean from his actions. When God brought this story back to my mind, I knew what I had to do.

I didn't need to go throw our new knowledge in the doctor's face. It wasn't necessary for me to have an eruption of every pent up frustration from years' past. The doctor and Jaycee weren't obliged to have some sort of closure. God was telling me to let it go. I can't change the past anyway. It was imperative that I get help for my daughter, and it simply wouldn't be from that doctor anymore.

I took my daughter's new information to her primary doctor, cardiologist, and other important members of her team that have been supportive. Consents were signed for communication between everyone, so they can understand the new treatment Jaycee would be receiving. I canceled my future appointment with the old pulmonologist. For the time being, the doctor at Mayo Clinic is taking over Jaycee's pulmonary care.

The thing is, I didn't pray about any of this. My thoughts gave me a plan, but my relationship with God provided a way for me to revise it. I know I did the right thing. Tomorrow, I hope I do the same.

Preparing your Child with Special Needs for Medical Procedures

In a few weeks, my daughter will be having a series of tests completed at a hospital. The thought of those procedures gives me anxiety and stress. I know how difficult some of these things will be for Jaycee. I dread them, but they are necessary. One way to manage all that negativity is preparation.

Besides packing for the hospital, I will be trying to help Jaycee understand what will be happening. She has a long history with hospitals, which is sometimes a hindrance and other times a help. Jaycee has an Intellectual Disability and is minimally verbal, so visual aides, repetition, and simple explanations are all important.

Over the years, I have figured out how to best prepare her beforehand and how to best support her during the event. Here are some tools I use:

Videos/Pictures
I love YouTube. Every time I have went to YouTube searching for a video for Jaycee, I have found it. Jaycee connects to videos well, so they are the best way for me to explain procedures we don't do often like CT scans.

The key to using videos as a tool is watch them with your child, narrate what is happening in them, and watch them more than once. Videos are good because they help Jaycee anticipate what will happen and help teach her new vocabulary.

Whenever I can, I try to take a picture of Jaycee in a procedure to use later as a reference. For example, I have pictures of Jaycee during her sleep studies because I know she will have to have it again. I then use that picture to remind her of what will occur the next time she has one. I have similar pictures of her during a CT scan. I can't take pictures of every procedure because it isn't proper or I'm focused on her care, but they are helpful to have as a reminder for her.

Picture Sequence Cards

I have made a few picture sequence cards like this one to help Jaycee with familiar situations that cause her angst. Blood work and IVs are horrible experiences for everyone involved. As soon as Jaycee sees a tourniquet, she starts to panic and reacts defensively. Before she starts to get upset, I try to pull out this sequence card in order to show her what will happen. I have other sequence cards for suctioning and diaper changes, which are things she only deals with while hospitalized. I keep these cards in my purse, so I have them when she needs them. 

Pain Cards

I made these cards for Jaycee, because there was a time when she panicked over every procedure. X-rays, for example, are pain free, but Jaycee couldn't be convinced otherwise for a time. She fought everything due to her anxiety of the unknown, and it was exhausting for both of us. I used these pain cards in different situations so that she could begin to understand that not everything in the hospital is painful. After a few years, Jaycee responded better, and I only pull these cards out now in extreme circumstances.

Doll Demonstrations

Occasionally, we have used dolls to help Jaycee understand what is going to happen. We purchased a hospital gown for her American Girl doll, and I created a hospital wristband for her doll. We have changed her doll into these items prior to Jaycee's planned hospital admissions. Jaycee understands the connection. Jaycee is often reluctant to wear a hospital gown because it means she won't be going home immediately. Therefore, we try to convince her to put one on to be like her doll.

Sometimes, hospital staff have used teddy bears to demonstrate wearing oxygen or IV insertions. This technique has not been helpful for Jaycee, especially when they attempt them on her own dolls. Jaycee has gotten upset during these demonstrations. I do believe part of her reactions are because she understands what they are telling her and isn't happy about it.


These are the ways I have helped Jaycee prepare for hospital procedures. With medical testing coming up, I will be going over some of these things again. Let's pray they work, and things go smoothly!

Where do I Fit in the Easter Story

<sup>Easter is a time of reflection in many ways. For me, the story of Easter has several powerful messages and examples of people who demonstrate great faith as well as crushing unbelief. 

Jesus is the focus of Easter. There is redemptive hope found in the actions of Jesus. He's the one who gave his life for all of us born into sin. Jesus embraced the call on his life. He died a gruesome death for the love of us. He is THE story.  

Then there's Peter. We all know what Peter did. Peter told Jesus he would follow him no matter what but ended up denying him three times, as predicted. Some can see how Peter caved under the pressure of the situation around him. Others wonder how Peter could deny Jesus after witnessing a multitude of miracles. Peter is a remarkable a figure and shows how diverse the reactions of the followers of Jesus were.</sup>  

^{Of course, we have to mention Judas being that he was one of the 12 disciples too. Judas saw the miracles of Jesus, yet evil entered his heart somehow. He turned Jesus over to his enemies for money after everything he saw Jesus accomplish. Judas is a reminder that being close to Jesus doesn't mean anything unless we fully commit our lives to him.}

There's more pivotal people that are worth mentioning but for time's sake I will stop there.

As I was reviewing the story of Easter this year, I had to pause and wonder where I fit. Who am I most like in this story?

Then it became clear to me who I have been in the past. I have been chief among the mockers.

Scripture tells us that soldiers mocked Jesus by saying, "If you are the King of the Jews, save Yourself." (Luke 23 NKJV) Other people were recorded saying, "He saved others; let Him save Himself if He is the Christ, the chosen of God."

Those mocking Jesus couldn't understand what was happening. They couldn't comprehend Jesus choosing that path. Sometimes, God's intervention doesn't look like what we picture. God may not move how we anticipate.

When reflecting on Easter, I surmise that I would have been one of those people wondering if Jesus really was God's son, because he was enduring a horrible death. Surely God's goodness would spare his son the pain? Can God's love be found in the middle of such suffering? A grand display of power in the form of suddenly destroying those who were hurting Jesus would have been just as effective, right?

Yes, I would have been one of those hecklers. Perhaps, I would not have openly shouted something to the crowd, but I would have been thinking it. I know this because I have had those thoughts too many times in my life as a parent.

I have stood by my daughter's hospital bed and been bombarded with thoughts such as:
There's no way God could be with us. If God were here, my daughter wouldn't need all these machines and tubes to stay alive. God would spare my daughter of all of this. 

If God cared about my family, we wouldn't be dealing with this situation now. 

Surely all this suffering isn't part of God's plan.

I struggled for years to find God's mercy when my daughter's situation seemed mercilessness. Several surgeries, diagnoses, and health scares meant that I had every question and doubt possible enter my mind. I rarely voiced them aloud but my mind was full of them.

I'm not sure if those mocking Jesus ever realized how wrong they were. However, I realized how wrong I was.

I knew I needed a renewed mind when trying to find God in my daughter's medical situations. Of all the characters in my own storyline, the role of heckler is not doing any good. I need a voice of faith resounding through my situations. I need affirmations and reassurances. I don't need questions. I don't need to be my own worst enemy providing the mocking statements.

Thankfully, I have learned to recognize my doubts. God has given me the grace and ability to go through situations with my daughter without emotionally trying to figure out why they are happening.

As another Easter celebration passes, I thank God that I don't have to be a mocking unbeliever anymore. I know who God is. I know what His love looks like- even in the hospital. I know what His goodness looks like too- even if my daughter is deathly sick. What about you? 

What Helped My Foul Mood

I was in a foul mood when I woke up.

After the morning rush of administering medications, making my son's lunch, and getting everyone dressed, we were ready to load into my van.

I told my daughter to sit in the back seat, but she ignored my words. She went straight to the front passenger seat. Jaycee can legally ride in the front. However, she demands I take objects like a cup or my phone without regard to the fact that I am occupied driving. I didn't want to be distracted today as we were driving two hours to the hospital for an appointment. Jaycee continued to make her way to the front and buckle up, not pausing at all when I told her to stop.

My voice had a sharpness to it when I told her that she needed to move again. I could see I wasn't going to win this argument with her already buckled up, so I resigned and let her stay. As I pulled out of the driveway to start our long day, I felt frazzled. My patience was thin, and it wasn't even 8 am.

Then, I recognized what was really happening.

The hospital brings out some ugly parts of me. I have associated the hospital with pain, fear, trauma, and emergencies. I have had good experiences with the medical profession but many negative ones. I have felt every emotion in a hospital.

When there's an ordinary appointment for Jaycee, my brain has a difficult time shutting off old negativities and emotions. Just thinking about going to the place filled with memories of surgeries, hospital admissions, and scares with my daughter puts me on edge.

I took a breath. I noticed the tension in my shoulders and arms. With great effort, I tried to relax them. I put on some music. I said an inner prayer and began the familiar route to the hospital.

Once there, Jaycee willingly exited the van, and I was relieved. Typically, she refuses to get out because she recognizes the hospital. Once we arrived at the parking garage elevators, she refused to board them and said, "Uh-uh." By the time a second elevator arrived, Jaycee was ready to board but then refused to leave it a few minutes later. The promise of lunch after we were done helped move her forward.

The meeting with the new specialist proved to be informative and helpful. But, there were the same old annoyances that come with any appointment. There was the handing over of the insurance cards and going over our demographics, even though I reviewed this information at this hospital two weeks prior. I dutifully provided Jaycee's list of medications for what must have been the 5,000th time in my life. These things must be done, but the repetition of it all can irritate me.

I was in a foul mood indeed.

We walked to a nearby restaurant for lunch between appointments. We have just recently started having some nice weather. It felt good to be outside without a jacket. I saw some flowers in a bed providing beautiful color to an area surrounded by grey buildings. I could have easily walked past those flowers because I was in the hospital area where nothing "good" could be appreciated. But, I stopped. I told Jaycee to look at the flowers.

"What's your favorite color? Yellow or red?" I asked.

Jaycee responded with sign/words, "Red. Like my shirt."

"I like the red ones too. Let's take a picture."

We snapped a few pictures, and I tried to snap out of my foul mood. When I am feeling discouraged and irritated with the medical situations in our life I can't control, I try to focus on the good. I made myself list some positives:

Jaycee is walking today! We normally would have had to use her wheelchair for all of this walking, but the progress she has made from outpatient physical therapy has done wonders. Jaycee is walking this distance to the restaurant! 

We have specialists available to see our child and help with her medical problems.

My van has faithfully made another trip to the hospital. 

I have the ability to pay for my daughter's medicines and supplies we'll be picking up later today. 


As long as I have been on this journey with my daughter, I still make mistakes. I let negativity get the best of me at times. I can get into foul moods even though I really know how blessed I am. I am human. That's the problem. I need to be more spirit-filled and allow God to work in me more.

I'll have another chance to get it right in a few weeks when we go back for another appointment. I will be sure to stop and smell the flowers again. 

I Wasn't Built for This

My daughter's oxygen saturation monitor alarms an hour into my sleep. I'm jarred awake and roll over to look at the video baby monitor screen to view what is happening in my daughter's room. I see numbers on the monitor that suggest a problem and stumble in the dark across the hall to my daughter's room.

Over the next couple of hours, I administer emergency medications. I turn on her oxygen. Then I raise her oxygen. I suddenly decide this can't be managed at home. I race around the house grabbing supplies, clothes, and essential items. I call a family member to come watch my son, so I can rush my daughter to the emergency room.

I wasn't built for a life like this.

My daughter struggles to breathe. She is scared as I try to dress her at 2 in the morning to go to the hospital. She whimpers when I tell her we need to leave to go see a doctor. She slowly makes her way outside towards the van. I can tell it is hard for her to breathe and walk in the state she is in. She sits still in the van on the drive wearing a nasal cannula on her face and the monitor on her finger. At the hospital, she cries when she is asked to lay on a hospital bed. She knows where she is, and she isn't happy. As an IV is attempted a few times unsuccessfully and other measures are started, my daughter cries, hits, and reacts to things she can't control. She waits for the ambulance to transport her to a second hospital where an ICU bed is waiting for her.

She wasn't built for a life like this.

My son peacefully sleeps through the chaos of the night. He awakes for school to find his grandfather at the house and not his mom or sister. (Dad is away at work.) He fights back tears as he hears the news of his sister. Somehow, he pulls it together to get dressed for a school day. He tries to go on even though the weight of the unknown with his sister and his mother's absence is heavy on his mind.

He wasn't built for a life like this.

When the job responsibilities of a mom are listed out, very few would mention administering emergency medications, monitoring at home for oxygen use, and caretaking in the hospital dozens of times as possible duties. When a mom pictures her child's life, few would predict so many incidents with hospitals, ambulances, and the medical world. When a mom has more than one child, she doesn't envision one visiting the other in the hospital, Facetime calls from a hospital room, and the pain of being torn in two directions.

None of us were built for this life. Yet, we are all in it. At times, it is extremely hard. This life of watching a loved one repeatedly have illnesses that become so serious is well...serious. Sometimes, it feels like it will crush my heart as a mother. A few times, I have even uttered, "I can't do this anymore," when the pain of her declining health feels heavy on my chest, and I wonder how much more she can endure. Yet, I do and I can.

I wasn't built for a life like this, but then again I am.

I continue on with life. I try to find the silver lining in our situations. Sometimes, I have to search very hard to find it, but I do end up finding it. The hardships of my daughter have forced me to analyze my own feelings, fears, and reactions. Some of them aren't pretty, but I grow and learn from each of them. I appreciate the healthy times in our lives and make the most of moments both small and large.

Many times in my life, I have been asked how I do what I do as a parent of a medically complex child. The answer is simple. I do what I do because it must be done. But if I had to really answer the question, I would have to credit my ability to cope as a testimony to God.

Belief in God helps keep me focused. God gives me strength that I didn't know I had. Prayer gives me an outlet to express my inner thoughts and fears. God gives me hope for a future that may otherwise seem hopeless in a sense that the medical problems aren't going away. God has built me for any problem life throws at us.

Like me, my children are indeed built for the challenges we find in this life. We acknowledge the pain and difficulties but look forward to the joys we have as well. The kids celebrate small victories. They hug when they are reunited back together after an illness separates them. They both find a way to move forward even though there are some arduous moments behind them.

After two recent hospital admissions involving two trips to the emergency room, my head is still spinning trying to process the events of the past couple of weeks. We have all survived the battle again. My daughter's breathing has recovered, and her health is back to her baseline. My son and I have settled back into normal sleeping patterns and anxiety of the situation decreases as each day passes.

There are some messy, hard days in our family, but we carry on. We were made for each other after all. When we dig down deep, we find that are built for exactly these moments with hope, faith, and love carrying us all through.

Why I Needed Prayer When I Didn't Want It

Last week, I had this post on the Key Ministry website. It's an honest look at how I can feel spiritually after weeks of care taking. Start reading it here if you missed it: 

A few months ago, I found myself in the chaos that occurs during an illness with my medically complex daughter. For weeks, my daughter’s breathing struggled. At home, there were increased albuterol treatments day and night and nocturnal oxygen use. Her oxygen saturation monitor alarmed frequently several nights jarring my husband and I awake causing us to spring into action. 

There were two trips to the emergency room that led to two hospital admissions for a total of 6 nights. After two rounds of steroids, two different antibiotics, and numerous breathing treatments, my daughter was finally back to her normal self. In all, five weeks were devoted to treating this illness that ended in pneumonia.

During all of this, our routine flipped upside down. Thanksgiving was spent in a hospital, not with family and friends. My work schedule was revised and revised again. Each day presented challenges. 

Click here to continue reading. 

Leaving Some Things Behind

A new year has just kicked off. There are many days ahead of me filled with promise, hope, and life. When looking forward into the new year, I can't help but reflect on the year I just lived through though.

There were many happy days in 2018 and some that weren't so great. Recently at church, the pastor asked us what we would like to forget and leave behind from 2018. I could easily give the guy a list, which mostly involves illnesses.

Let's start at the beginning of the year because it was a flurry of chaos. On January 2, 2018, I was in the Intensive Care Unit (ICU) with Jaycee who was battling a respiratory illness and sepsis. It was ugly and rough. When she went home, she wasn't well at all as she needed oxygen off and on with near constant monitoring. All this happened while my husband was a few states away working.

Before she fully recovered from that illness, the horrible Influenza A virus inflicted itself on both of my children causing Jaycee to go right back in the hospital. All of January and most of February was spent battling different respiratory problems. By the time Jaycee felt well enough to go back to school at the end of February, I was completely drained from the stress of being her sole caregiver.

Three more times in 2018, Jaycee's lungs just couldn't fight through issues at home and required hospital stays. April's hospital stay was relatively short. Two hospital stays in the fall were only a few days each, but the majority of her illness was intensely treated at home. All of November and the first week of December was spent monitoring and medicating Jaycee. The illnesses that go on for weeks and weeks require so much of my energy and focus. That's a fact and not a complaint. But, many times people think illness that happens outside the hospital is no big deal. I can assure you that there are many hectic times at home during an illness.

I would like to forget those weeks and months from 2018 for sure. They were scary, challenging, and mentally draining. More importantly, they taint my thoughts about the future.

When I start a new year, I try to project what may happen. Part of this is my type A personality that seeks to find routine in my life that is often not routine. I look for patterns in Jaycee's health and try to predict problem months in the future. Therefore, I look to the past to see what may happen in the future. That's exactly what I need to leave behind going into 2019.

I have come to accept and wait for illnesses and hospital stays. They have happened every year in almost 13 years of Jaycee's life. So of course, I anticipate them. In that lies the problem.

This year I am trying to leave the baggage of that behind. I'm trying to go in to 2019 with a clean slate. I'm trying not to anticipate some problem months for my daughter based upon her past. I'm trying not to predict illnesses and hospital stays. I'm starting, instead, to hope for a future of health and not be in dread of something bad that may occur.

As I write this, we are only a few days in, and I'm already struggling to stay completely positive. I have had a few fleeting thoughts in my head: Last year at this time, Jaycee was in the hospital. She was so sick, and it was hard. That thought is usually followed with this thought: I hope she doesn't get sick like that again or get Influenza again. And these are the thought patterns I am trying to correct by telling myself this: Today, Jaycee is healthy. God, let her health continue. 

I'm a work in progress. I'm trying to let the past with its fears and stressors go. I'm trying to see the future for the hope and optimism that may occur. After all that my daughter's been through, I haven't given much room for hope to grow based on past experiences. This year, I want to make a place for it to flourish by leaving some things in the past where they belong. 

Am I a Hero, Incompetent, or Irrational?

People often make snap judgments about others. This is a normal part of life. But, I have found this is especially true in emergency rooms.

Sometimes, I take my daughter to the emergency room (ER) in various states of respiratory need, and I am viewed as a hero. I am thanked by the doctor for bringing her to the hospital and praised for my prompt attention to my child. My notes on her breathing over the previous day or two are found remarkable by the doctor, and further accolades are given regarding my care giving.

It feels good to be the hero and for the doctors to recognize the part I play in keeping Jaycee healthy in intense times of illness. I feel validated in my care. It is, after all, difficult to keep her breathing under control during illnesses. She is minimally verbal, and rarely communicates illness or pains. I must rely on my eyes, the numbers on a monitor, and my ears that hear the changes in her breathing. Even though she is 12 years old, she cannot convey information about how she feels and if her breathing is worsening. Most importantly, when I am viewed as the hero, Jaycee receives the care she needs from the ER in a timely manner.

I'm not often seen as the hero, however. More than a few times, I have been viewed by emergency room staff as incompetent. They see my daughter's breathing tanking, and they assume I'm somehow responsible. I've had doctors make snide comments towards me such as, "You need to be educated on her asthma action plan if she is coming to the ER like this."

Never mind the fact that she was a nonverbal child at the time.
Never mind the fact that I had been monitoring her day and night with much anxiousness.
Never mind the fact that sometimes no matter what I do, her breathing suddenly gets worse.

It doesn't matter though. No one completely understands what I do at home, and my parenting comes into question when her breathing is in a bad state. I can tell by attitudes and words given by medical professionals that I am seen as incompetent. I was even questioned by a social worker once regarding my efforts at home and my involvement with local doctors to monitor Jaycee's breathing. Every time, I am viewed as incompetent it sticks with me for weeks and months. It causes self-doubt. It makes me feel like a bad mother. Even though I know I am trying my best to take care of my medically complex and developmentally disabled child, being regarded as incompetent causes me to second-guess my decisions. That isn't healthy for me.

More importantly, being viewed as incompetent makes me distrustful of those who are suppose to be helping my daughter in the hospital. Instead of jumping in and supporting my family through another scary illness, I'm thrown into an emotional whirlwind by the people I am trying to obtain help from.

On another note, there have been multiple times at the emergency room when I have been viewed as irrational. My daughter has needed the ER many times, but I am not one to go to it for no reason. After 12 years, I know when she is sick but can stay at home. I also know when she is getting worse and needs treatment from real nurses- not her mommy nurse. But, it really bothers me when I am viewed as an irrational mother who has brought her daughter to the ER for no reason.

Sometimes, Jaycee doesn't look too sick when I bring her to the hospital. She has a high pain tolerance, so she may not look as sick as I describe. I'm sure a nurse sees a child watching an iPad peacefully as no reason for alarm, but looks can be deceiving.

There have been many occasions when my daughter's numbers for oxygen saturation and heart rate fluctuate substantially prior to her really making that downward turn in her respiratory status. When her numbers are on the low side of normal during the five second check in triage, it often gives a false impression of the situation. Clearly staff aren't concerned as we have sat and sat for hours without anyone rechecking her on a monitor. More than once, a doctor has recommended continuing treatment at home without rechecking her vitals after the initial triage. More than once, we have spoken our concerns and asked for her to be watched on a monitor for a few minutes before going home. With reluctance, the doctor usually does so and then jumps into action when the problem is finally observed-hours later.

After multiple trips to the ER, I can spot when I am being treated like an irrational person fairly quickly into the process. I hate it when doctors don't listen to me, because they are wasting precious time with Jaycee's health. I hate having to assert my nonclinical opinion of my one and only patient to the health professionals. I hate 'making a case' for them to treat her. Much like when I am viewed as incompetent, these experiences make me feel distrustful of the medical world. The people I take my daughter to for help drag their feet, don't do full examinations, and aren't speedily providing treatment because I am seen as an overreacting parent.

In November, I made two trips to the ER with Jaycee. The first time I went with my daughter she was admitted for 3 nights but I was first treated in the ER like an irrational mom overreacting to an increased oxygen use at night. The second trip to the ER a week later had the opposite reaction. Though I had to wait over two hours to be seen, once called back, my story was listened to and Jaycee was given prompt treatment before being admitted for three more nights with pneumonia.

Several friends have asked me if emergency staff are more prone to pay attention to Jaycee and make sure she gets extra attention in the emergency room because of her history (multiple admissions to the ICU for cold viruses, ventilator use twice for illnesses, recurrent pneumonia needing extra support). I tell them- no! Her history doesn't matter in the emergency room for whatever the reason.

I never know how I will be received by those giving emergency care. Will my daughter be given prompt attention and treatment? Will they blow us off and act like I am irrational? Will they take the severity of the situation and somehow turn it on me? I never know. That is why emergency rooms are hard for me for one of many reasons.

I get that doctors meet all sorts of people in ERs, and they must prioritize patients. But, I hope they would listen more to parents, especially those of medically complex children. I would hope they would want to be seen as an advocate for the child's health instead of an adversary. Unfortunately, I have seen both.

The Local Commercial that Bothers Me

"I woke up in the morning with a bad ear ache," a little girl says in a local commercial while distorting all the r sounds. (Sorry-I'm a speech language pathologist.)

The commercial shows the little girl going to a local doctor's clinic for help. It goes through the typical scenes and information that you would expect to see for an advertisement of a local clinic. But, then the mother of the little girl says something that stuck with me.

"There's nothing worse for a parent than a sick child," she says before the closing tag line.

I have a couple of problems with the mother's statement, which I assume was words from a script. First of all, as I have blogged before, I generally have patience for people who say anything that starts with: There's nothing worse than.... (See the post Your Worst Thing) Perspective is everything when talking about what the worse thing is. One's "worst thing" can be considered nothing to someone else. Everyone has a unique life perspective with their own best thing in life and the absolute worst. My viewpoint of the worst thing has changed over the years with different health scares with my daughter. But, most people's worse thing would never be close the scenarios our family has lived through. Still, I have patience with people walking out their own challenges. But, I don't have patience with this commercial.

After I saw the ad a few dozen times over the weeks I asked myself a question. Is the mom's "worst thing" a child with an illness that could be cured by an outpatient clinic? I think I know what the commercial is trying to say, but I don't like the seriousness of her statement in this commercial featuring an ear ache and a local clinic. There are things that are far worse.

I thought about the mothers who have lost children. Certainly, that's worse than any sick child.

My child has been in the ICU several times over the years. I can recall at least 3 times when I knew a child down the hall in ICU was dying. Generally, clergy were present. A flood of people were typically allowed into the patient's room when they are otherwise limited to only 4 visitors at a time. Most, if not all, of the equipment leaves the patient's room, and you know it's not because they are suddenly improving. The social worker is often nearby with tissues. Sometimes, an empty patient room is filled with the family's overflowing visitors eating snacks freely, which again is something usually not encouraged in the ICU. Grieving family members console each other openly in the halls.

Three times I have watched snip-its of these scenes unfold in the ICU for another family. I overheard parts of the patient's story in the parent lounge as family members shared with each other about a horrific accident or the battle with a long, serious health condition. I don't try to listen to their stories, but I hear them when I'm in the lounge eating my meals because my daughter is taking nothing by mouth.

One time, we were the room adjacent to a dying baby. My husband and I drew the curtains in our room and tried to give that family more privacy. When we saw the parents walk out of the hospital one last time with a cart full of belongings and no child, we both wanted to cry even though we didn't know them or their baby. They were experiencing the nightmare ending we were hoping to avoid, and it was too real. Not everyone has a happy ending in ICU.

Having a child in ICU has brought some of the worst moments of my life. However, my child is still here thankfully.

So as I think back to this health clinic commercial, I wish I could change the strong words of the mother. I can think of plenty of lines the ad could have said such as:
It's scary when your child is sick.
Parenting a sick child isn't easy.
As parents, we hope our children are never sick.

Still, we are all on our own journey with our own life experiences. I'll try not to judge the mother character in the commercial. However, if the clinic contacts me for consulting, I'll be happy to help with their next script. 😊

From a Flop Summer to a Fantastic One

The official summer season is coming to an end soon, and I hate to see it go.

Our summer was pretty great this year. We made so many good memories. Some summers are just a flop for us because of medical issues with my daughter but not this year. Here's a sample of what we did.

Since my husband was working in Oklahoma part of the summer, the kids and I met him in Branson for a long weekend. We had fun swimming, watching Dolly's Stampede, playing miniature golf, and doing the normal touristy things. Here we are on a Ferris wheel.

Over summer break, Jaycee competed in our state's Special Olympics for the softball throw. It was a miserably hot time with head indexes in the triple digits. Still, it was great seeing her compete. Last year, she qualified for the state games, but she came down with a respiratory infection a few days before the games. We weren't able to go, and it was disappointing. I'm so glad she was able to compete this year. I love seeing her get to do something that showcases her abilities. Gold medal!

We made the long trip out west to see my husband in Oklahoma a few weeks later. We swam at the campground, went bowling, and explored the area. We were really happy when daddy came home later in the summer. We captured this moment near some buffalo in Oklahoma.

We went camping at a local recreational hot spot for a weekend. We played on a beach, sat outside briefly (really hot summer), and walked trails.

We had lots of easy going days at home too.

I'm sorry to bore you with a list of things we did and vacation photos, but the fact that all of it happened is really nice and really rare.

Last year, the summer was completely different. Jaycee had a respiratory infection that didn't hospitalize her, but it did take some time out of our summer and canceled our Special Olympics plans. She had a surgery at the end of June and recovered from it all the way until August. Most of the kids' summer break revolved around hospitals, medicines, and precautions last year. We felt like we did nothing fun even though we did work a few fun things in during our trips to the hospital for follow up appointments.

There have been other summers that weren't so great either. In 2015, Jaycee got sick in June. She ended up on a ventilator in ICU. That illness was severe and took some recovery time at home for several weeks as she regained her strength. Our vacation plans were canceled. We settled for simple outings at home when she was fully recovered.

We have had other summers that have revolved around surgeries or illnesses or a slew of appointments. They dictate what we do and when we do it. I try to maintain positive attitudes because my daughter being alive is the most important thing, but it's a bummer when plans have to be adjusted or we're locked away in our house in isolation while she recovers. That's why it is so nice when everything works out like it did this year.

So as I reflect back on our summer, I'm thankful. I appreciate the simple things, like making plans and keeping them because she was well. I appreciate the fact that we had freedom to do things we wanted to do and not things we settled on doing because of health issues. The hard times make you appreciate the good ones. I just hope next summer can be this good!

Devotions For Families with Special Needs or Medically Fragile

As I posted earlier in the summer, I have had some extra writing opportunities that are keeping me busy, and I wanted to share some of them today.

First up.... a devotional book:

Summer Devotions for Special-Needs Families is a book packed full of short devotions for families that have a child with a diagnosis. It was edited by Sandra Peoples and a number of Christian writers contributed to the book. Being on the Key Ministry Writing Team, I was blessed to be able to contribute a few devotions. If you are looking for something new to read, consider this book. Some of the topics are summer related but many are good to read any time. You can find this book on Amazon.


Next....a new piece: 
I recently had another post on the Key Ministry website called Reaching Out to Homebound Families. I, personally, have been homebound with my daughter for weeks or months due to her health issues. Being isolated at home can be very difficult, especially when you want to stay connected to a church. This post was written, so churches can help families in similar situation. Here's a snippet:

In a perfect world, all those in the faith could attend church every week as they desire. Life, however, presents all sorts of challenges making church attendance impossible or difficult for some families. There are some individuals who are homebound long-term due to a health condition and cannot attend church. Some families, like mine, have temporary homebound times which may occur after a child recovers from a surgery or serious illness, for example. Other families do not feel their child has a safe place in their church, because there is no one there equipped to handle their child’s needs or behaviors.

Whatever the reason, there are families who desire to attend church but cannot. Listening to sermons without attending church is relatively easy as many churches share them through podcasts, online videos, CDs, and social media. These outlets are great but hearing a message and feeling connected to a church are two different things. Interacting with people, having an opportunity for face-to-face prayer with someone, and receiving little words of encouragement are all missed by the family that is homebound.

Click here to keep reading...

What My Son and I Have in Common (Besides the Obvious)

"When you were a kid, did you go to the sibling play room?" 

"No." I tell my son as we sit in the hospital cafeteria eating lunch. I had just picked him up from the playroom after I left his sister's ICU room. 

"I never had a reason to visit the hospital when I was a child," I continue. 

"You never saw your brother in the hospital?" 

And that's the moment I knew that my son and I were different yet the same. 

My son's upbringing has been strangely unique. He has grown up watching his sister take medications, wear oxygen from time to time, and have various interventions at home. Elijah has visited his sister, Jaycee, in the hospital several times a year since he was a toddler. It is the only life he's known, and it's hard for him to understand a life different than his.

Elijah visiting Jaycee in the hospital a few years ago.

"You do realize that most people don't visit their brothers or sisters in the hospital, right?"

Elijah sat perplexed for a moment. "Why not?" 

"Most kids aren't sick like your sister," I try to explain. "My brother was never in the hospital as a kid, so I never needed to visit him."

He still sat puzzled.

"Most kids you know have probably never had their brother or sister in the hospital. Most kids don't have a sibling like your sister. She was born with really crummy lungs and illnesses are really hard on her," I went on to explain.

He seemed satisfied with that response, but I knew that he couldn't really wrap his mind around what I was saying. This has been his life for all of his life. He's become acquainted with things most children never encounter.

Similarly, my life as a mother has had only this reality as well. I have trouble comprehending the lives of other moms. I only know what I know: hospital admissions, surgeries, specialty appointments, and health scares with my daughter. I have no idea how to relate to moms discussing sports for their children or typical childhood events. My motherhood experience has not followed the norm; neither has my son's childhood.

In this, my son and I have something in common. Our lives are shaped by our experiences with Jaycee. He finds it hard to imagine a life with a healthy sibling. I find it hard to imagine a life with two healthy children. I see him having a hard time relating to other children his age. I have a difficult time relating to moms of children without special or medical needs. We both have lives that few people can relate to, and it's made us both a bit quiet in large groups.

Still, I see another commonality. We both get anxious in our own ways when we see Jaycee coming down with a cold virus.

"She won't need to go to the hospital, will she?" Elijah asks this question hoping to have his mind eased.

"She's fine right now. I'll keep watching her," I say to him. I know better than to give him false assurances and make promises about a situation I can't control.

With my husband away at work, the two of us wait the illness out hoping to treat it at home. He watches me dose out medicines and run machines. He asks me about her numbers, and I try to be calm when things aren't going well. I can see the worry in his little face at times; I know it must be on mine too. Yet, we both find a way to keep going. When it all finally settles down and Jaycee is healthy again, my son and I have something else in common.

We know how to appreciate those good times. We are grateful for the chance to go play outside, keep plans we actually make, and leave the house when Jaycee's breathing is back to normal. We know how to enjoy simple things, and the value of health. He appreciates that even at his young age.

My son and I will carry on. We will try our best to relate to other people who don't experience what we do. We know that we understand a piece of each other that no one else will, and in some ways, that makes it a little easier. 

Being a Mom in the Hospital

A mom finds herself in many situations. Most of which are expected with the title. Grocery store speed shopping is a favorite of mine. Googling answers for my son’s homework is becoming a more frequent activity at my house. Coming up with creative ways to bribe my daughter to comply with a simple request-that’s fun too. But, these are generally all expected as a mom.

To some extent, a mom can anticipate having some interactions with their child in the medical world. Well check-ups with a doctor and vaccines aren’t always fun, but they are a necessary part of life that most choose to do. Illnesses happen too. Dosing out medications and caring for a sick child is a hard part of being a mother, but it is temporary thankfully.  

But then there are women like me... We have mothered our children in the hospital for chronic conditions or severe illnesses. It is a situation that no one is prepared for -nor is it something one imagines when dreaming of their baby’s future early on. Yet, you learn to navigate the life you are given, even if it involves your child in the hospital.

Me and Jaycee-Yes, I am super tired from the hospital!

We have just finished up hospital stay 30 something for Jaycee. For those 30+ admissions, my plans- my appointments, work, and sometimes vacations- were canceled. I go where I am most needed, with my daughter to the hospital. Sometimes, I ride in the ambulance with her. Other times, I transport her myself with my van full of equipment like a monitor and oxygen. A couple of times, she went to the hospital in a helicopter as my husband and I sped there in our vehicle trying not to think about what was happening while we were separated.

I have spent as little as a few days in the hospital with Jaycee and as long as 4 weeks. There have been times when Jaycee craves my affection and love. I am happy to be there to kiss booboos and calm a scared and sick child. There have also been times when I have been pushed away. I am sure she wonders why I allow her to be poked and suctioned. Though she is 12, her mental age is more like a child under age 5 in some areas. She doesn’t understand everything that happens to her. Even though I have made visuals specifically for the hospital, supplement my words with sign language, and use simple words, a child who is terrified is hard to reason with. So if she pushes me away, I go across her hospital room in a chair as she wishes. I try not to take it personally and wait for her to receive my love again, which can take minutes or hours.

Being a mom in the hospital is tough. Before I get any farther, I want to clarify that my daughter has it the toughest. She has to endure it all, but this is my perspective as a helpless loved one who is at the mercy of the illness and condition beating my kid up. As Jaycee’s mom, I want her time in the hospital to be short and easy as possible with no setbacks. It is hard to stand by, watch numbers on a monitor, and wait. There is nothing I can do to stop things from getting worse. There is also nothing I can do to help her get better any faster. I must depend on the staff to make good decisions and figure out the right course of treatment. And, yes, I give my opinion when I think it will help.

As Jaycee has gotten older, my jobs in the hospital are pretty simple. Order her meals and help her once they arrive. Help with bathroom breaks and baths. Guide her through movie choices or put on music. Help with dressing and positioning of stuffed animals. I offer hugs and kisses and words of encouragement. I cheer her on when she is reluctant to take her medication. I help her FaceTime her friends and family when she is missing all her buddies. We call her brother every day and check on him. Unfortunately, that is about all I can do for him during our time of separation.  

The hospital is a hard place for a mother. It makes you see things you never wanted to see and be in situations you never knew existed. Some of the hardest things for me have been watching her be bagged, intubated, suctioned, and medically drugged. Looking at her body with PICC lines, central lines, arterial lines, catheters, etc. at different times hasn’t been easy. Some have left scars on her body. Though the time of the illness may be long gone, these remind me of her fight.

I have been called strong, a good mom, amazing, and a few other positive words. I am strong-sometimes good, but not on my own strength. It comes out of me when the situation arises. Sometimes, I think these admissions will break me emotionally. There are times I have wanted to give up, drive home, sleep in my bed for a night, and pretend my little girl didn’t struggle to breathe so often. It is a thought I have for a second. It’s not an option really though. I keep going until she is on her way to recovery and back home again. That’s where we all belong. Still, sometimes I break down frustrated with things I cannot change, fears for my daughter’s future, and from exhaustion that comes from an admission. Even strong moms get worn out.

As we approach Mother’s Day, I want to recognize the many roles of a mother. You never know what motherhood will bring to you and your children, but all life and time is precious. God is gracious to us and equips us with everything we need to help us through the good and the hard times as parents, even if we aren’t always able to see it at the time.

Motherhood doesn't stop in the hospital because there is a little life I helped create sitting in a bed needing me. I'll be there for her. That's what moms are for.

Happy Mother’s Day!

Prayers for My Healthy Child

Last week, I had a piece on Patheos. Take a read, if you missed it:

Sometimes, I leave him in the middle of night to transport his sister to the hospital for an emergency. He knows when this happens I could be gone for a few days or a week or two.

Other times, I am gone an entire day for scheduled specialty appointments for his sister.

There are all sorts of reasons why my son is cared for by other family members a few times a year. Every time it happens, my heart is in two places. I go with the child whose health requires me to be present, but I’m thinking of the child not with me. The child with medical conditions and limited verbal speech obviously needs her mother. Still, there is a son left behind with emotional needs unattended by that same mother.

To Read More, Click the Link: 

A Prayer for My Healthy Child: The One Who is Left Behind

Jaycee Gets a CT Scan...Finally

A 15 minute test took hours and hours of our lives last week, and it almost didn't happen.

Jaycee's pulmonary doctor wanted an updated CT scan, since her last one was 5 years ago. The doctor asked me if Jaycee would be able to tolerate a CT scan of her chest. I'm glad she asked for my opinion, because simple things aren't always simple.

Jaycee has Down syndrome. She's minimally verbal. She has had many, many hospital admissions, and this causes her great fear and anxiety with most tests and procedures. It took 3 of us to hold her down for a flu shot last fall, for example.

"If it just takes a few minutes, she'll be fine. I think she can do it," I told the doctor with assurance.

I meant what I said. But then came the paper from the insurance company. The document gave the preapproval numbers for the CT scan with contrast.

With contrast? Wait, what?

Yep, I googled it. Google told me that an IV type poke would be necessary to deliver the dye.

That changed everything. Bloodwork, shots, and IVs are all terrible experiences for Jaycee. She gets scared and moves, which makes more people have to hold her down. It's a vicious cycle that has kept going for years.

I had reservations about the scan, but I figured we'd get through it.

To prepare Jaycee for the test, I used a technique called video priming or video modeling. The technique basically involves having the child watch movies about a specific topic in order to prepare the child for a new experience and teach the child appropriate behaviors during that new experience. (Yay for my speech-language pathology degree!)

On Monday, we watched a few YouTube videos showing children getting CT scans. I sat next to her and narrated what was happening using words I wanted her to remember. ("The girl is getting pictures. She is with her daddy. She is happy. The pictures don't hurt. She's not crying. She's done. She is going home.")

On Tuesday, we watched more YouTube videos with me narrating again. By this time, Jaycee was signing back, "Me. Doctor. Pictures." I showed one video of a person getting an IV for the contrast CT scan. She didn't like that. She whined when she saw the IV part even though it was brief. That was a bad sign. Still, I pointed out that the boy in the video wasn't crying.

On Wednesday, I did more of a mix of contrast and non-contrast videos. She still whined and did a fake cry when she saw the brief IV part. I tried to remind her that no one was hurt or crying.

Thursday was the big day. "Me, pictures," she signed as we headed to the hospital. She was prepared! We made the 3.5 hour trip to the hospital. When we arrived, Jaycee was calm and happy. Sometimes, she starts getting anxious as soon as we arrive in the parking lot and refuses to get out of the van. She got out and walked inside smiling. She was actually fine up until the nurse asked her to lay down to get the IV inserted. The nurse put on gloves, and Jaycee was done. She saw the tray of IV insertion supplies, and she wanted no part of it.

The next 10-15 minutes were spent trying to get Jaycee to hold still so they could find a vein. One person looked with no confidence. Another person looked and couldn't find a vein either. (This is the story of her life.) Finally, a third person emerged who thought they found a vein worth trying to stick. Jaycee was ready for this fight and began to wiggle and squirm to keep the stick from happening. There were only 2 nurses trying to do the stick. The last few times she needed an IV in the hospital it has taken 4 or more people to hold all the limbs that frail around. The nurses were all patient, kind, and compassionate. But, they weren't going to get the IV in this way.

They finally decided Jaycee just wasn't going to be able to handle the contrast part of the test. They warned that the contrast dye will make her feel like her chest is burning and the sensation that she's wetting herself but she isn't.

They asked, "Do you think she can lay still for the scan while she feels those things?"

Uh...No!

They listened as I explained how I felt that I had adequately prepared Jaycee for a scan without an IV. I could tell they were unsure if she would be able to be calm enough to do a regular CT scan. Still, they decided to call the doctor and get permission to do the scan without the contrast. Then the waiting began.

At this point, I wanted to cry. I didn't want to come back and do this quick test under sedation. That seemed a little overboard. I also didn't want to go home without doing anything. I didn't want the 7 hours of driving to be for nothing!

About 2.5 hours after our appointment was suppose to begin, we got word that we could do a regular CT. We were called back into a different room. Jaycee sat right down and followed all the directions as she signed "pictures." They fastened a big Velcro seat belt around her waist, but she never tried to get up. My mom held one of her hands above her head while I held the other one.

She did awesome! She was calm and happy. There was no fear in her eyes. Success!!

Jaycee celebrating that she was finished!

A simple test is never simple! I wonder how many health professionals know what some parents go through to get these things done. I'm just glad Jaycee's doctor allowed her to do the regular scan that didn't create so much anxiety and problems for her. In the end, everything worked out. I'm glad that we all worked together as a team and got her test completed.

And that my friends is how a 15 minute test can turn into a 3 hour test!