100 minutes a day for 2 years

Pneumonia. Asthma. Hospital admission after hospital admission. A scary stay in ICU.

In 2010, Jaycee was in the hospital twice for RSV and then again for pneumonia. It was the start of a pattern that got worse.

In 2011, Jaycee was in the hospital 4 times, 2 of which required ICU. This time they were for influenza type A, RSV, pneumonia in one lung, and pneumonia in both lungs.

2012 was a better year after changing some of her medications. She was only in twice for asthma and atelectasis.

2013 was the breaking point for us. Jaycee was in the hospital 5 times, including once in the ICU.

These are just the illnesses that required hospital admissions. She was treated at home for other respiratory illnesses.

All of this led to my husband and I looking for a second opinion for Jaycee. She was sick more than she was healthy, and it was taking a toll on all of us. Medications were increased and daily vest therapy was started. Still, she was having breathing issues.

When we shared our concerns several different doctors, we were told, "She will just be sick. There's nothing else to do."

If they were looking at their child puffing up and gaining weight from oral steroids and missing school for weeks at a time, would they be so dismissive??? If they saw their child so sick that she needed a ventilator, would they just go on with life so easily??

A new doctor at a different hospital about 4 hours from home provided a second opinion for us. It was nearly two years ago when we met this doctor and was given a new daily treatment plan. In his experience, he often recommended a specific approach to treat children like Jaycee that had asthma, recurrent pneumonia, obstructive sleep apnea, and a lung cyst.

Jaycee had already been on vest airway clearance twice a day and an inhaler to try to provide daily support. This doctor added in another daily inhaler and a daily nebulizer treatment. He handed us the written protocol:
-Administer 1st inhaler
-Wait 10 minutes for inhaler to work
-Start nebulizer treatment
-Run 20 minute vest therapy
-Administer 2nd inhaler

Quickly, I scanned the sheet. Wait? I added up the time in my head. How long is this going to take? Only 50 minutes from start to finish?!

"It's a commitment," the doctor said. "But you will see results."

Wow! If it works, it will be worth it. I was hopeful. I was also happy to hear there were some options left. (Through the course of this second opinion, we also discovered Jaycee had severe GERD that had went undiagnosed for years!)

It was February 2014 when we started the new 50 minutes a morning and 50 minutes a night medicine regime. It was an adjustment. I had to pray my way through it at times and was reminded that serving Jaycee is a ministry of its own for me.

I am not a morning person and neither is Jaycee. This regime required Jaycee and I to get up earlier than usual for school. On school days, I get up 6 and I get Jaycee up at 6:20. We have our mornings timed to a perfection.

The morning 50 minutes of medicine ended up not being as bad as I thought it would be. I lost a little sleep. I have to go in and out of Jaycee's room more often but it has become routine now.

The evening 50 minutes has been more difficult. On nights when we have nothing going on, our night medicines are done without any problem. The difficulty has come when we have something to do or somewhere to go. When are we going to do Jaycee's medications? In a pinch, we have done them in my van. Fortunately, my van has an outlet in it, so we can run her medical equipment while we are driving down the road. This has been extremely helpful! But, sometimes it is a pain to try to get Jaycee's medications in while allowing her to have some fun.

Jaycee watching the IPAD while doing a nebulizer treatment

Has doing this 100 minutes a day helped?
In 2014, Jaycee was only in the hospital twice. One of them had time in the ICU.
Last year, Jaycee was admitted twice both of which included time in the ICU.
Two hospital stays a year is much better than 5. But, the biggest improvement has been her ability to fight off colds better at home without going into the hospital. She rarely has an intermittent wheezing and difficulty triggered from extreme heat or cold now.

What have I learned in the past 2 years?
First, a second opinion is sometimes helpful. I felt I had researched and talked to enough doctors that a second opinion wouldn't be worth my time, money, and energy. I also didn't want to look crazy and paranoid to people. But, we were highly motivated by the fear that one of these illnesses could take Jaycee's life. That brought us to just the right doctor who had a totally different approach. If you are frustrated or don't like your doctor's plan, get a second opinion. Don't assume you have tried it all!

Finally, taking care of a child with special or medical needs is a ministry of its own. Sometimes, I feel the restraint of Jaycee's 100 minutes a day. I think of the things she and I miss because of the need to keep her lungs healthy. It is easy sometimes to let it bother me and get frustrated. But, I know it's helping. I know it's worth it.

Jaycee's life is worth every minute of every day of every year spent doing treatments! That's what keeps me going!

Jaycee doing her twenty minutes of vest therapy session.

2016: My Year To Be Pessimistic (Realistic)

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

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

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

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

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

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

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

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


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

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

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

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

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

My Life As A Reality TV Show

There are many shows on television now featuring all sorts of families. I have no desire to be one of them. But, sometimes I wonder what my life with my husband and two kids would look like on TV. Probably something like this:

There would be moments of education for the audience:
People would learn about Down syndrome and her heart conditions. As I use her nebulizer, bi-pap, and vest airway clearance machine, I can explain why Jaycee uses each one of them for her asthma, obstructive sleep apnea, and lung cyst. Her "talker" communication device would be explained as well as childhood apraxia of speech.



There would be moments that would make the audience go "aw":
Like the time Elijah declared one day when I suggested he would live with a wife when he's older, "I don't want to live with my wife. I want to live with my sister!"  Or how about when Jaycee squats behind the kittens and picks them up so proudly with a huge smile on her face. Better yet, an "aw" worthy moment would surely be when Elijah crawls up on his sister's lap when they watch movies together with her kissing the top of his head periodically.


There would be intense moments-those moments where something awful may or may not happen but a commercial break leaves you wondering:
People might gasp as Jaycee breaks free from my hand and runs across a parking lot. Cameras would catch my split second decision of staying with my son or running after Jaycee. Then there's Jaycee's yearly cardiology tests where we learn if Jaycee's valve leaks and pulmonary pressures have changed at all. I know that moment always scares me! 


Of course, there would be times when the audience would judge my parenting:
When Jaycee watches Barney on television while watching Kipper on her Kindle, I'm sure there would be Facebook comments about me. Other comments might come from me caving into Jaycee's requests for seconds at meals. For sure, I would be judged as I try to unsuccessfully respond to one of Jaycee's drop-and-flops (when Jaycee sits down and refuses to move). Obviously, I don't always know how to stop her behaviors.


And then, there would be times for the audience to get to know me personally:
If the cameras followed me to work as a pediatric speech-language pathologist, people would see the irony of someone like me having a child who can barely speak. They would also see how my home life and work life intersect making some days mentally exhausting for me. People would get tired of hearing, "I'm tired," come out of my mouth since I say it pretty much all day long.  They would see me waking up early so I can read my Bible before the kids get up. They would see me pray in the car and ask God for help and peace multiple times a day. Hopefully, they would get a sense of who I am--That even though raising Jaycee is at times challenging, I am a proud and happy mom to two children that I love dearly. And this reality is just fine with me.

The Week of Sickness

What does snot, coughing, and fevers mean?

It means last week was spent nursing my child back to health. Jaycee's combination of sleep apnea, lung cyst, asthma, and heart history means that a simple cold can go straight to her lungs and result in a hospital admission. Not every cold puts her in the hospital, but every cold does cause a temporary change in our schedules.

Here's was last week entailed:
-3 nights of waking up at 2 am or 3 am because Jaycee was sick
-Approximately 32 breathing treatments
-14 nebulizer treatments of hypertonic solution, which breaks up her mucus
-Approximately 29 vest airway clearance sessions...each lasting 20 minutes
-Several doses of Tylenol and Motrin
-5 days of antibiotics
-2 trips to the doctor
-Multiple spot checks with the oxygen saturation monitor

And did I mention I tried to work a couple of days last week too?

Yes, I was tired. It's hard to keep track of all the medications. It's hard for me to relax when I fear Jaycee's breathing could change for the worse at any minute. Yes, there were times I wanted to lay in bed and recuperate myself from the mental strain of taking care of Jaycee while she's sick. It seemed like when I wanted to relax, it was time for me to do another medication. I just had to power through and keep going. It was hard at times. Moms have to sacrifice and do what's best for their kid.

So all of the work did pay off. Jaycee did start to get better without a trip to the emergency room or the hospital, which was a huge deal for the both of us.

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.