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...

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.

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.

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.

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. 

Can We "Win" During Sickness?

A junky cough, a monitor alarming, labored breathing...

I respond with my daughter's emergency medications. I do all the things I have been programmed to do before we leave for the emergency room.

In this moment, I feel like we're losing.
Sometimes, I panic for a few minutes. Sometimes, I muster out a prayer.
The situation is out of my control.
It has happened again and again.

Each time, I feel like we're losing.
Our lives are interrupted by an illness that lands Jaycee in the hospital.
It is scary and unknown. Time and time again her lungs need help during a respiratory event.
Sometimes, she needs oxygen. Other times, it is full-time bi-pap or high-flow nasal cannula. A couple of times it has led to a ventilator.

The worse the hospital stay, the more it feels like we're losing.
The more support she needs to breathe, the more it feels like we're losing.

When we're back home, it feels like we have been in a boxing match that we have barely survived. Jaycee's body shows the marks of the battle. My daughter has bruises from repeated sticks. Her skin is often broken down from tape. She is frightened from the things that were done to her in the hospital and often is hesitant of my touch once home. Sleep evades me as I try to forget about the trials of the past days and weeks, and I often have to work to keep anxiety at bay.

After the chaos is over and life settles down, I briefly feel like we've won. She's alive and back home. That's a bit of a win, but the pain that led up to the win makes it feel very insignificant.

At church recently, a guest speaker made some comments that resonated with me on the topic of spiritual winning.

That's when a thought came to mind. It was a thought that I know was from God.

You think you are losing when you are in health battles with Jaycee, but you aren't. You've always won. When it looks like your losing, you're winning. 

I was astounded by this revelation. I mulled it over and even cried thinking about it.
I had always viewed these battles as losses simply because we were in them. Sickness found its way in her body again and again. Prayer hasn't kept these sicknesses away. I have never felt like a champion. In fact, I have felt battered.

For days, I thought about this idea. You think you are losing when you are in health battles with Jaycee, but you aren't. I even consulted my brother about it. (He's smart!) I've been looking at these hospital stays and health battles all wrong. The sickness isn't the indication of a loss, and that's hard for me to believe.

Somewhere in my upbringing, I became programmed to think that sickness is mostly due to sin or open doors or some problem in our life. I equated sickness with a spiritual failure that's present somewhere, and each illness of Jaycee's made me feel defeated spiritually. If you have been going to church a number of years, you probably understand this line of thought. It grew into my subconscious, and it made me feel like I was on the losing end of this battle simply because we were in them again.

My perspective on our situation is narrow. I'm too close to it. I see my daughter hurting, and I take it personal. I want her healthy-plain and simple. When she's struggling to breathe or turning blue or crying in pain in the hospital, my view of the whole thing can only be one thing....that it's bad and God isn't close in our situation. Oh man, how I need God's perspective!

I've come to understand another option. Jaycee was born in an earthly body with crummy lungs. Period. Her illnesses related to her abnormal lung function may occur simply because we live on a planet that doesn't always give us perfection in our bodies. We aren't in Heaven after all. Therefore, her illness isn't a sign of spiritual defeat but a mere product of living here on the earth. That's not to say God can't intervene in her situation. But, it's a way of seeing her illnesses as something else besides a "spiritual attack" that makes me believe we are on the losing end of things. I had a similar revelation on Jaycee's Down syndrome years ago, but never equated it to her lung issues.

Here's what I have gathered though in the past couple of weeks. If I really believed everything in the Bible, I would be more transformed by Christ and not let these health battles wreck me for weeks. If I can keep my eyes on Jesus, then I can find peace when life is out of control. If I don't look at her illnesses as a sign of losing, then perhaps I can see that I already have victory.

When I sit around feeling defeated because I see my daughter sick again, then I guarantee I am not in a position to effectively minister to her when she needs it the most. 

I have struggled a bit to write this post out. I hope it makes sense to most of you. I suppose I could say the winning occurs in my inner dialogue, my attitude, my point of view, and my emotions. If I think we're losing, I'm going to feel defeated and powerless to do anything. If I see myself for the champ God sees me, then I can be a victor especially when my daughter is struggling to breathe.

A Day for Wishes

There are things about raising a child with medical conditions that have made life different for our family. There have been scary moments in the hospital with my daughter, Jaycee, as I watched machines give her breath during a respiratory illness. There have been tearful departures as Jaycee left my arms to go off to an operating room with doctors. There have been an innumerable amount of prescriptions filled and specialty appointments scheduled. There have been times when I have hugged my scared child as I tried to convince her to enter a hospital for an ordinary appointment because she is frightened that she will be admitted.

The absolute worst part has been wondering if my child with Down syndrome, repaired AV canal heart defect, ablated Wolff-Parkinson White syndrome, asthma, lung cyst, obstructive sleep apnea, and GERD will live to be an adult. There have been a few close calls, but we are grateful that Jaycee is still here.

For some of the hard and scary days that Jaycee has had, we have also had a few amazing, one-of-a-kind experiences throughout her 11 years of life. One of those happy moments was made possible through the Make-A-Wish foundation. Make-A-Wish grants the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength, and joy.

In 2015, Jaycee was granted a wish through Make-A-Wish Illinois. (If you want to read how this process started and our trip, click here!) Through the generosity of many foundations and companies, Jaycee was able to meet that amazing purple dinosaur, Barney, at Universal Studios. She was ecstatic to see meet her favorite character as well as visit many Orlando theme parks with her family and stay at the Give Kids the World Village.

Jaycee's granted wish remains the most wonderful week in all of our lives. It offered unique experiences and helped us forget about the difficult moments from the past. We didn't know how much joy it would bring Jaycee and the rest of us nor did we realize the lasting impression it would leave on us. Two years later, we still look at pictures from that trip, and Jaycee communicates about her favorite experiences.

World Wish Day is celebrated on April 29th to mark the anniversary of the wish that began the Make-A-Wish foundation. Since the first wish in 1980, more than 350,000 children around the world have had their greatest wishes fulfilled by Make-A-Wish. Make-A-Wish is the world’s largest wish-granting organization, serving courageous children in nearly 50 countries on 5 continents around the globe.

When I think about all the people who have come together over the years to donate time, money, resources, and gifts to fulfill the wishes of children like my daughter, I am overwhelmed with the kindness and goodwill of others. There really is good in the world; you can find it with Make-A-Wish.

Visit wish.org to refer a child, make a donation, or learn more about the foundation.

Where is God when...

Where is God when Jaycee is turning blue from respiratory distress?
Where is God when Jaycee had heart surgeries?
Where is God when my little girl is in pain?
Where is God when we are rushing to the emergency room?


These types of questions have popped in my mind often since having Jaycee. Sometimes, the question was a whisper. It was something I could ignore or easily refute. I knew God was with me.

Other times, the question was screaming in my head making me doubt everything I believed and understood about my Christianity. The question tainted how I saw the world. It made me see nothing good in my life because the problems were so huge. I stumbled around day to day going to church, reading my Bible, and asking for wisdom during trials with Jaycee with lots of doubt hanging over me.

Here's the one thing I have discovered.  When I doubt God's place in my life, I become completely hopeless....about everything.

And that's not a good spot to be in.

Be strong and let your heart take courage, All you who hope in the Lord. Psalms 31:24

I've blogged previously abut how I don't blame God for medical issues that happen in Jaycee's life. I think some things just happen,. While I don't play the blame game anymore, there are moments when I look around and try to find God during a crisis.

So, as I reflect back on Jaycee's 2 weeks and 5 days in the hospital, I will answer the questions:
 Where was God when all that craziness was happening? Where was God when Jaycee was in respiratory failure and on a ventilator? Where was God when her blood pressure was going too low? Where was God when Jaycee was crying in sadness in ICU? Where was God when I was feeling all alone and scared?

• When Jaycee's breathing was going downhill at 3 in the morning, I was alone in Jaycee's room praying. I felt alone in my stress and worry as I prayed that the ventilator they were threatening would not happen. I thought about calling my sick husband, who was a few blocks away in a hotel, but I didn't want to wake him up. I didn't want to wake anyone up with this news but I needed someone to talk to me. Then at 4:52 am, my phone vibrated. My friend from church, Amanda, sent me a scripture through a text message. I don't know if that's a normal time for her to send a message, but I'm assuming not. I was so happy to have someone awake I could reach out to about this situation, since at that point I was the only one aware of it! I needed that text at that hour. That was a moment from God.
• During my two hours of praying against the ventilator and reading scriptures, I pleaded with God that Jaycee would not need the ventilator. Then finally, a thought came, "What if the ventilator is what she needs? She might need it to get better." It wasn't the answer I was looking for but the thought was from God. It was preparation. She would be fine even if medically she went down a road I didn't want her to go down.
• A short time later, a text message from Amanda again that encouraged me to listen to God. "It's ok if He says yes" that she needs the ventilator. Confirmation of a thought that came to me earlier! And a God moment.
• When my husband and I were sitting in the parent lounge while the doctors were sedating Jaycee, putting in her feeding tube, and intubating her, I was nervous but calm. Then the doctor came out to tell us Jaycee's blood pressure was dropping and wanted permission to put in an arterial line. That was my breaking point. I cried. I let it all out and the words, "I can't do this again," came out of my mouth. I wanted to give up because I knew the days ahead would be really hard. My husband encouraged me. Then the Unspoken song "Good Fight" came to mind. The song stayed with me for days; it was God in the song. Here's some of the lyrics.

"Good Fight"

Until you stop breathing
Until you stop bleeding
Until your heart stops kick-drum beating
When it's hard times
When it's long days
And the enemy is right up in your face
When your back's against the ropes and you're feeling all alone

Keep fighting the good fight (Never give up, never give up)
Keep letting your light shine (Holding it high as long as you live)
'Cause I'm never gonna leave you
Always gonna see you through to the other side
Keep fighting the good fight, fighting the good, fighting the good fight, good fight

Even in the road blocks (yeah)
Even through the rough spots
When you're feeling you've given all that you've got
I'm with you in the next step
Giving you in the next breath
I'll be the voice saying "You're gonna make it"
When you're out there on your own
You are never alone

• Then a few days later, I was listening to the JOY FM Christian radio station on my short 8 mile drive to the hospital from our campsite. And what song should come on the radio? Yep, "Good Fight" came on. God was with me on that drive. It was a powerful moment that brought tears to my eyes.
• God was there when people messaged me prayers and scriptures at all hours of the day.
• When I got the phrase "God's got this" messaged to me from 3 different people, I knew it was a God thing after the second one. It's not a common phrase people message me. Amazing!
• When people reported to me they were awakened in the middle of the night to pray for Jaycee, it was proof God was in our situation.
• And of course, Jaycee getting better and getting discharged from the hospital was a God moment.

So there was God in our hospital admission.

He did not show up in a miraculous move healing Jaycee on the spot and saving us from all those heartaches and tears. That seems to be the thing people look for during a medical crisis: a huge, major victory.

If that is the only version of God you allow yourself to have, you will miss all the little, powerful, and meaningful God moments.

So, I know where God was in our situation. I have no doubt He was there.

Will you be willing to look for Him in your situation?

Jaycee getting therapy post ventilator while she was in the hospital

A Special Purposed Sick Day

 

This picture sums up what we have been doing lately. A cold brought on a sinus infection, perforated ear drum, and a respiratory infection. Snot and coughing and wheezing, oh my! Here's what we do on a sick day:

 

-6:30 am: Jaycee's oxygen saturation monitor has alarmed a few times in the past half hour for dips into the upper 80s. It's time for a breathing treatment. I do it with an inhaler while she's asleep and put her on her vest. She wakes up momentarily then settles in for the 20 minute airway clearance therapy. Her monitor shows improvement in her oxygen now, which is good. I then do her ear drops, antibiotic, oral steroid, advair inhaler, nasal spray, and motrin. I do the ritual bed check once Jaycee is up. It's wet which means I have to wash all the bed sheets and give Jaycee a shower. 

 

-7:30: Jaycee is dressed now. I show her several options for breakfast. She picks chocolate yogurt but only eats a bite or two. I read my Bible while eating breakfast. Elijah is now awake. He does his morning routine and eats yogurt too. When they are both settled and quiet, I read them a chapter from Ezekiel for our daily reading.

 

-8:15-10:00: Jaycee is ready to start her day of doing as little as possible. She is wore out from her illness and is content to watch movie after movie. Elijah stays busy playing and checking in on Jaycee's movie. I do laundry, wash up medicine syringes, and other chores. I frequently check on Jaycee, looking for signs of change. I listen through the stethoscope or check her oxygen levels on the monitor. I see if she feels warm and take her temperature. Because she is nonverbal and has a high pain tolerance, if she lets me know something is wrong by crying, things are usually horribly bad by that point. So I know my checking could be perceived as neurotic, but it's a necessary evil when I'm trying to stay on top of Jaycee's illness to keep her out of the hospital. Depending on what the monitor or thermometer or my ears tell me, I can get myself worked up. I pray. It's not a very good prayer. It's more of a fear based prayer-Jesus, help her to get better and not go to the hospital- rather than a prayer full of scriptures or faith. I know my prayer isn't the greatest but it's all I can muster up right now.

 

-10:30: Jaycee gets a nebulizer treatment and another 20 minute vest session. She is mad that we are doing another vest. She pushes me away but allows me to put it on.

 

-11:30: It's lunch time! Elijah complains about what we're eating as usual. Jaycee, who is normally a big eater, doesn't touch her plate. I offer her a few more things. She indicates with signing that she'll eat soup. It's true; she ate it.

 

-1:00: Jaycee wants to lay down with me in my bed. She signs "mama bed." She lays down for awhile but doesn't sleep. Elijah bounces around the house and watches a cars movie. I enjoy this down time. I'm exhausted from playing the role of nurse. I'm well aware of the time left before the next treatment.

 

-2:30: Jaycee gets another round of my checks before getting another nebulizer treatment and 20 minute vest session. Shortly afterwards, I discover she has wet her bed. For the second time today, I'm washing all the bedding and showering her. I'm frustrated. I pray a simple prayer. Jesus, help me get through these illnesses. Let me have a good attitude while I'm cleaning up mess after mess because my attitude right now is awful.

 

-4:15: I start fixing dinner. While that's going on, I get her bi-pap filled with water and ready for the night. I get all the night medicines drawn and set out. I have to attempt to work at my job tomorrow, so I get all my stuff prepped for the next day too.

 

-5:15: With my husband home, we sit down to eat dinner. Jaycee doesn't want to come to the table at first. As soon as she sits down, she throws up in her dinner plate. Our family meal time won't happen tonight. My husband and I are tired and mentally drained but duty calls. Jason cleans up the mess on Jaycee. I take care of the mess in the kitchen. She's running a fever, so medicine is started. Another load of laundry is going again. Poor Elijah is eating dinner by himself. He seems content. I try to check in with him once in awhile so he doesn't feel neglected. By the time we are finished with Jaycee, Elijah is done eating and ready for his bath.

 

-6:00: Jason and I eat our warmed up meal, not that either one of us has an appetite now.

 

-6:30: Night medicines are given. It's time for another nebulizer and vest treatment. Jason and I squeeze our baths in and get in a few minutes of conversation.

 

-7:30: Jaycee is exhausted and ready for bed. We pray for her to have a good night of breathing. We hook her up to her oxygen saturation monitor. She alarms as soon as she falls asleep. I put her bi-pap on and her numbers go back up.

 

-8:00: Elijah is ready for bed. We say our bedtime prayers and go through some scriptures he has memorized. Tonight it's Psalm 150:6 and Genesis 1:1.

 

-10:30: I'm still awake because Jaycee is ready for her last breathing treatment and vest session of the day. I take her off her bi-pap briefly in order to do her inhaler and wrestle the vest on her while she's trying to sleep. She's done this before, so it goes smoothly.

 

-11:00: With everything done, I can now go to bed. I'm tired but the stress of the day makes it difficult for me to fall asleep quickly. I pray for peace, strength, and help. In a short time, I'm sleeping. My sleep will be interrupted periodically tonight from alarms. I'll sleepily walk to Jaycee's room and try to see why Jaycee's oxygen dipped down. I'll reposition her or the bi-pap mask. Fortunately, these things do the trick tonight and no oxygen or trip to the emergency room is needed.

 

My special purposed sick day has ended. I can only hope that tomorrow is better.