When a Loved One is on a Ventilator

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

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

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

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

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

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

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

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

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

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

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

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

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

Be safe out there!

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!

When Bubby Visits ICU

Whenever Jaycee is in the hospital, we have always brought Elijah, who we call Bubby, in for visits. We have several reasons for doing this: we want him to know why we aren't home with him, hospitals are part of Jaycee's life so he needs to get use to them, and we miss him & want to see him.

My husband and I have tried to set some ground rules in order to bring 5 year old Elijah to visit his sister without scaring him. He doesn't visit if Jaycee is in any danger of something going wrong that day.I don't want him there on a day she is being intubated seeing me cry and getting worked up. He comes after the storm. That being said, if he visits and seems uncomfortable, he gets to leave the room. We do not force him to look at her or touch her if he does not want to. We try not to have him at the hospital too much. It is boring on a good day and there's not much to do here if you are well. But we are blessed that this hospital has a playroom/daycare for siblings open a few hours a day, so he has somewhere fun to go. And as he has gotten older, we give him opportunities to ask questions about things on Jaycee or about her.

So as I sit here in the intensive care unit for 16th day, I am reflecting on Elijah's visits this time. This hospital stay, like so many others, began with us leaving at midnight while he slept in his bed. We woke up poor grandpa to come stay with him so he wouldn't be jarred awake with bad news. Shortly after admission, Jaycee ended up in ICU because she needed to be on a bipap machine constantly due to the rhinovirus and pneumonia attacking her lungs. When that wasn't doing the job, Jaycee was intubated for over a week. Now, she is still recovering but doing much better.

Elijah had his first visit on this admission when Jaycee was stable on the ventilator. His grandparents brought him over for a short visit. He greeted me with hugs and small talk. Then I showed him his sissy. Bubby was prompted to ask any question he wanted.

The monitor, as always, caught his eye. He asked me what all the numbers meant, which I explained one by one. Then he asked me what a few of the IV lines were. Since he didn't mention her breathing tube, I told her how that was helping Jaycee breathe. Then he said he had 1 more question. "What's those scissors for on her bed?"

The nurse said, "We call those gizmos. Want to see one?"

Elijah happily takes the prize and starts hooking and unhooking them to objects. That was that.

Later, he asked to sit in bed with Jaycee and watch tv with her, which is what they do at home. I put him at the feet of her bed and positioned a pillow between him and her so he had a visual boundary on where he couldn't cross. It was great to see my kids in close proximity once again.

But it was the elevator ride that sparked the most interesting conversation. He read the list of floors, what was on each, and asked what some of them meant. Then, he asked, "What does the PICU mean?"

"It's the pediatric intensive care unit. That's where the kids that are really, really sick are."

Immediately he said, "But that is where Jaycee is. I didn't know she was really, really sick. You never told me!"

"Sorry. I just thought you knew that because Jaycee had a bunch of tubes and wires in her. But anytime Jaycee is in the ICU, she is really sick!"

His voice sounding concerned then asks, "Why does she get so sick? I never have to go to the children's hospital."

That's the million dollar question. I do my best to reassure him by telling him all the things I try to tell myself when I am scared about Jaycee. I also remind him that Jaycee was born with sick lungs (asthma, obstructive sleep apnea) so colds are much harder on her than any of us.

When the questions stop and we are back standing by Jaycee's bed, he talks to his sister. In a soft voice he tells Jaycee he has missed her and that he wants her to feel better. He holds her hand and encourages her the only way a bubby can. And even though this is a very sweet moment, I hope we never, ever relive this again.

How the ICU is like a Haunted House

As I write this, I'm sitting in the intensive care unit listening to machines assist my daughter's breathing. This is the 6th time (at least-maybe more) Jaycee has been in ICU for an illness or emergency. The worst ICU stay included 3 weeks on a ventilator. The "best" ICU stay for her was just 1 night after going into respiratory distress after a procedure. We are no strangers to the ICU though I would love to never return here again.

If you have never had a child in the ICU, let me paint a picture for you. It is like a haunted house. You know going into it, that something bad is going to happen that will scare you. Even when there is nothing scary at the moment, you are on guard anticipating the next scare. You know absolute relief will only come when you leave that place, but you don't get to decide when you exit.

The characters in this haunted house don't scare you with axes or other weapons. It's syringes, IV sticks, tubes, machines, suctions, diagnoses, or just the threat of these that makes you scared.

A new parent coming in to the ICU is like a small child who is easy startled by anything in the haunted house. Me, I've been through this haunted house a few times. There are some things that don't make me flinch at all that would probably horrify first timers. Being on bi-pap continuously doesn't bother me much although I know it's not ideal. Holding my child down to assist with a necessary blood draw or cannula placement is second nature to me. The ventilator, now that machine is one that terrifies me. It means she's dangerously close to an exit I hope I never see. Watching the placement of really long tubes isn't pleasant either such as placement of a ng feeding tube or a PICC line. I find a way to shield my face so I won't see what's happening.

There are no ugly decorations or darkness in this place. In fact, this place is rarely ever dark. Instead, this haunted house has simple monitors that display numbers that can give you a sense of relief or send you into a panic. The alarms the beep, buzz, ding, and sound at unexpected times can be frightening. The images of your child enduring such awful, unimaginable things as a result of those alarms will scare moms like me for weeks, months, even years to come.

But not everything in the ICU is terrible. There are some really nice people here. They are doctors, nurses, residents, and respiratory therapists to name a few. They mean no harm when they are part of the scary moments. In fact, they are trying to save your child's life which sometimes calls for things that make us parents squeamish.

So if you ever find yourself in this place waiting for an exit, do whatever it takes to fight off all the fears, imagery, bad news, and worst case scenarios. Find a positive song, verse, person, or activity to help you through. It won't be fun. It won't be easy. But when you leave that haunted house holding your child's hand, it will all be worth it.

My Life on DVD

On September 22, my daughter entered the ICU. She has been on a ventilator ever since.

If my life was a movie on DVD right now, the movie would have moments of sadness, suspense, and hope. There would be times when people would shake their heads and say "That could never happen." But it did because this story is true.

There are times I find myself in the hospital wishing I could hit fast forward. I want her off the ventilator so we can hug and kiss. I want to know what her life will be like in 1 week, 1 month, or 6 months from now. I want to fast forward through some of this heart ache and discouragement and get to the part where hopefully things are better. But I can't because this story is unfolding now.

There are times when I am laying awake at night with my life rewinding. I'm playing back awful scenes. Like, when the doctor told me she would need a breathing tube and when I watched the doctor bag her two times when her oxygen levels dropped. Or when the doctor told me on September 23rd early in the morning that she may not make it. I don't want to rewind to these events; they have the power to get me completely discouraged. I try to pause this thinking and press play-to live in the present.

Hour by hour, day by day, present thinking. Through tears, prayer, support, and the word of God, we will get through this. 

Psalm 118:17, Acts 17:25, Psalm 34:4,7