COVID, Down syndrome, & Our Experience

I'm still in a bit of shock over what has transpired in the past couple of weeks. My body is worn out. I haven't been sick, but I have been caring for those who have been. Our supply of nebulizer vials and ibuprofen is critically low. The amount of bleach, lysol, and disinfecting wipes I have used in the past week is quadruple my norm. It's been a wild few weeks, and I am grateful we are through the storm of COVID-19. 

During the pandemic, we have felt it was important to try to protect our teenage daughter, Jaycee. Jaycee has Down syndrome, a twice repaired heart defect, asthma, obstructive sleep apnea (treated with bi-pap since age 3), and other lung problems. She's been on a ventilator twice for a cold virus; any respiratory illness has historically been difficult to manage at home. 

With this in mind, we have always weighed risks for her- not just during the pandemic- but any time in her life. There is a delicate balance in keeping her safe and having a life. We have had to find this balance again and again as health issues or respiratory viruses have popped up. We don't want Jaycee to be sheltered at home for long periods of time, and we don't want to put her in harm's way, if it can be avoided. With COVID-19, there seemed more at stake when making these decisions compared to other health concerns in the past. 

We haven't exactly hidden ourselves away in the past 10 months, but we haven't thrown caution to the wind. We considered how we could do some things while minimizing Jaycee's risks. We taught Jaycee early on how to wear a mask, because she had necessary medical appointments in the spring of last year. We initially practiced short outings with her using her mask. It was a struggle at first, but eventually she tolerated the mask longer and longer. She's a pro with it now, but her drool doesn't always make it easy. I have always carried sanitizer with us but use it even more frequently during the pandemic. We used her wheelchair during outings so we could limit what she could touch and position her where we wanted her. We tried to lessen her risk; not keep her at home all the time. 

In August, she had the opportunity to attend school in-person. We felt it was important for her to attend. School is her social life, where she gets her therapies to treat her delays, and where her educational needs are met. School makes her happy; she was extremely unhappy and confused with remote learning. My son wanted to attend school in-person as well. By August, my husband and I were working outside of the home. We figured at some point, we would have a run in with the virus given that we were all going out almost daily. 

Out of nowhere, my son suddenly developed a cough one night in January. It came on so quickly that I didn't suspect anything serious. He's had many colds in his life, and this seemed like those. The next day, we took him for a COVID-19 test and paid for an additional rapid test fully expecting it would be negative. The positive result put me in a state of shock and the entire family in quarantine. We had unknowingly been around someone somewhere with COVID-19. We couldn't trace the virus, but sometimes that is the case. 

With the positive test, I found myself facing what I had feared for months. I had read some articles on the severity that could occur with Down syndrome and COVID. I also knew Jaycee's own medical history, which didn't give room for much optimism. However, Jaycee has been on a long healthy streak, and her body is stronger than its been in years. 

On day 2 of our quarantine, Jaycee woke up with loose stools. She constantly battles constipation, so I knew it was a bad sign. If she felt poorly prior, she had not made that known. I messaged a few of my strong Christian friends who gave me encouragement and calmed some of my fears. It was no surprise that Jaycee tested positive that day, as well as my husband who also developed symptoms. 

We contacted Jaycee's pulmonologist immediately. We started our "yellow" zone medicines and interventions (increased nebulizer treatments, cough assistance, airway clearance) on the first day of her symptoms as we tried to stay ahead of the problem. We were told to check if Jaycee qualified for the monoclonal antibody treatment in our state. With a quick google search, we found our state's guidelines and who they considered "at-risk." It appeared Jaycee qualified, but it took our local doctor to work out the details. 

On the 3rd day of her symptoms, Jaycee received the antibody infusion at our local hospital. The infusion was an outpatient procedure that took a little over an hour to run intravenously with an hour of monitoring afterwards. Jaycee handled the infusion well, and I took comfort knowing she had this treatment working in her favor. 

Knowing COVID-19 has a wide variety of symptoms, it was hard to predict what it would look like in Jaycee. I felt like I was sitting around and waiting to see if she stay on a mild course or get worse. I tried to fight off anxiety and stress. It all seemed to hit me at night, and I had great difficulty falling asleep and staying asleep. Part of me felt like I needed to watch Jaycee's pulse oximeter monitor all night because that is historically when she has her greatest difficulties. Ten months of hearing the worst COVID-19 stories were in my head making me feel like I needed to watch Jaycee all day and all night, which isn't humanly possibly. Her heart rate and oxygen saturation numbers bounced around more than usual at night, but nothing too alarming ever happened. 

With her verbal speech limited, I am not sure if Jaycee felt strange, achy, or lost her taste or smell. She rarely voices pain or anything of that sort. I could tell her voice sounded different for a few days. Her appetite didn't change at all. She ran low fevers of 99-100 for a few days. She often looked tired in the afternoon and evenings and slept 10-11 hours a night. A few days after her infusion, she developed a small cough. Her breathing had changed somewhat, noticeable to me because I have had to analyze it for years. But overall, the sudden decline or worsening respiratory symptoms I feared would come simply didn't. For that, I am so grateful. 

I adjusted her medications based off her oxygen saturation numbers and apneas tracked on her monitor. By the time her 10 days of quarantine were over, she was well enough to return to school (with clearance from the health department). I thank God that we were able to get her an early treatment and that Jaycee made a quick recovery. It really was an answered prayer. 

As for the rest of the family, we all faired pretty well too. My son had a few days of coughing and snot, and then quickly felt much better. My husband had a rough time having many symptoms at once. We carefully monitored his breathing for a few days before calling the doctor to get medications that seemed to slowly help. He isn't completely back to normal yet, but he's getting there. I felt I developed some minor symptoms after the rest of my family were positive. However, I tested negative not once but twice. It's a little perplexing as I obviously had a high exposure to the virus taking care of everyone in my home. As I write this, I'm left in quarantine while the rest of my family is out. I am tempted to complain about being in a long quarantine, but I have nothing to complain about. Our family is blessed that we all recovered and had no major complications. 

I share our story for other families who have a loved one with Down syndrome. Prior to talking to our pulmonologist, I had no idea that antibody treatments would be available for her. I want to make sure other families are aware that this may possibly be an option for your family member with Down syndrome or other health conditions. If your family has a run in with this virus, I hope you can have a good outcome too. 

3 Keys for Public Outings: Special Needs Edition

The thought of a public outing can create all sorts of thoughts and feelings for moms of children with special needs. Even though it may be challenging, leaving the house is a necessity in life. Moms take their kids to the grocery store, doctor's appointments, playgrounds, and restaurants. These outings may take extra planning when your child has special needs.

I have parented a child with special and medical needs for 13 years. We have learned many lessons together in that time. I'm still learning on how to support my child in public outings even now.

Last week, I took my daughter, Jaycee, to a water park. She wanted to go there; it was her idea. A hot July day wasn't the best choice, but it was the only day my husband was off work. Before we left for the water park, I had a picture of how things would go. I didn't envision a perfect day, but I did expect to be there for 3 or 4 hours.

The first hour we were at the water park, things went well. We swam in the pool. The kids and I went down a water slide a couple of times. We floated around the lazy river. Jaycee splashed and laughed. My son, Elijah, was busy running from one area to another. Then, all of the fun suddenly stopped.

Jaycee walked from the lazy river to her next adventure at a snail's pace. Sensing something was wrong, I encouraged her to sit down and take a break. I offered her a cold drink, and she guzzled it. My husband and I took turns sitting with her for the next half hour. Seeing no progress was being made, we asked Jaycee if she wanted to go home. To which she responded with, "Yes!"

I wasn't ready to leave yet. We were only there for 1 1/2 hours, but 30 minutes of that was sitting with Jaycee in a chair.

As we left the water park, I was hit with a twinge of disappointment. I wish Jaycee didn't tire so easily. I wish the day could have been a little longer. I started to get worked up about the abrupt ending, and then I had to calm myself down. We did what we could. I had to be thankful that we had an hour of fun.

It got me thinking about how far we've come over the years. Jaycee has grown in her ability to handle different public situations. I have matured with my emotions and responses to my daughter. For that reason, I'm offering three keys to managing your child with special needs in public outings.

1. Lower your expectations. 
Lowering your expectations may sound like you are preparing for only bad outcomes. That's not the case. If you have a glowing idea of what may happen when you take your child with special needs somewhere for the first time, you may be disappointed and miss some positives that occurred.

When Jaycee was 5 years old, we decided to take her to the movie theater to watch "Winnie the Pooh." She loved Pooh bear and movies in general, so I thought it would go well. I pictured her sitting in the seat and being elated when her lovable, yellow bear appeared on the big screen. When the lights went down, Jaycee got scared and dropped to the floor. She sat there for the duration of the hour long movie. She never saw any of it. My son, who was only 2 at the time, laughed and watched in delight.

On subsequent visits to the theater, my goal for Jaycee was to sit in the seat for any amount of time. We didn't see movies often, so it took her 4 years to watch a movie from beginning to end. "Cinderella" was the first movie she watched, but she spent the previews sitting on the floor. Now, Jaycee sits in her seat the entire time holding her popcorn and soda like a champ. It didn't happen overnight. I had to have patience and not take her reactions personally, since I was the one planning our outings.

2. Respect your child's limitations.
When deciding on what public outings to attend with your child, you always want to consider your child's limitations. There are some things that I know will be hard for Jaycee. Any outdoor activity with heat means Jaycee's endurance will be short even now at age 13. When she was younger, I had to learn what bothered her, which was frequently discovered through trial and error.

When Jaycee was 3 years old, I took her to a Wiggles concert. She loved the Wiggles, and I was looking forward to a fun outing with my little girl. I purchased seats in the back, because I was unsure of how she would react. I fully expected her to be happy. When the lights went dark, Jaycee started crying. It was unusual for her to cry, and I couldn't calm her down. I tried pointing out Wags the dog and Greg Wiggle to help her recognize what was happening. I eventually had to leave and walk the hall with her. When she calmed down, she immediately fell asleep. My mom and I sat through a Wiggles concert; Jaycee woke up for the final few minutes.

The concert didn't go as planned, and I didn't try to go to another one for a long time. Dark, loud, and unfamiliar places confused Jaycee. For the most part, I tried to avoid these, because entertainment situations weren't that important. It wasn't worth her tears and confusion. She needed time to mature, and I respected her limitations.

Jaycee currently gets very stressed on days we have doctor's appointments. I know it's not a good idea to add anything fun before or after those appointments or she will understandably have behaviors. I respect those limits when possible.

Sometimes, you can't respect limitations because real life requires your child to cope. When Jaycee was growing up, I planned outings to restaurants and stores. Restaurants weren't too bad for Jaycee unless something inside was different, changing her routine. Stores were a real struggle. She wanted to run off and didn't understand dangers in parking lots. It took much mental effort for me to keep Jaycee safe. I couldn't avoid these situations because they were a regular part of life. While I understood that Jaycee struggled in these situations, I needed to push her to learn how to behave properly. On weekends when my husband was home, we intentionally went places to practice walking in a store, staying with a parent, and safely entering/exiting a vehicle. It took years (literally) of practice and patience for stores to be an enjoyable experience for both of us.

3. Celebrate the small victories. 
In all of the unexpected difficulties with your child, it's important to recognize and celebrate any victories. Your victories will probably be small steps in the right direction instead of huge accomplishments. It's important to reflect on how far your child has come and maintain your patience for what is still ahead.


I hope these three keys will help you gain a healthy perspective when taking your child in public outings. As a parent, we can't control our child's responses to different environments and situations. We can only help them through it, teach them when appropriate, and respect what they can't do right now.

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. 

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.

I Will Not Stress Eat. I Will Not Stress Eat.

If you have been a faithful reader on this blog, then you will understand when I say that sometimes my life is stressful. I try not to let stress get the best of me, but it's a demon I fight when Jaycee is sick or in the midst of a health challenge.

Stress has taken its toll on my body over the years in a number of ways. (See the post: How My Body Responds to My Daughter's Illnesses.) Weight gain has certainly made its way into life as a result. I tend to eat when I am stressed, and there's many opportunities for that in the course of a year when parenting a child with many chronic health conditions. I also tend to use caffeine, mainly soda and sweet tea, as a way to give me energy and keep me alert through hard times. If I am doing treatments every four hours around-the-clock, I have used caffeine to get me through it.

Back in August, my husband and I joined the Keto bandwagon. I needed a diet with rules and specifics, and Keto has that. It was a big change for us, but it has made a difference in our lives already. My husband has lost over 60 pounds since August, and I have lost 35. On Keto, you increase your fats and significantly decrease your carbohydrates as you teach your body to burn fat and not carbs. Keto means no soda. Well, I suppose you could have soda with no sugar, but that doesn't appeal to me. Obviously, sweet tea is out the question. Pastas, breads, potatoes-no, no, and no. What does that leave? Meat, broccoli, green beans, and cheese have become my best friends. The diet has been going well overall considering how I was eating prior to Keto, but I recently had my first experience with a real health challenge on this diet.

Jaycee's breathing had an asthmatic wheeze to it near the beginning of the month. At first, it was intermittent, so I started extra treatments as needed. Then, her breathing got a little worse more consistently, so I made a run to the doctor with her. He thought she should start steroids and do set treatments every 4 hours during the day for a few days. I started the plan and wasn't overly concerned with things.

The following day, her breathing suddenly took a turn for the worse. With my husband at work and my son at school, I did a random spot check with Jaycee's oxygen saturation monitor. These spot checks are essential to keeping Jaycee healthy because she does not ever communicate anything about her breathing, fever, or symptoms. I have to catch a problem with her breathing before it gets out of hand. Jaycee's 8:45 am spot check showed her oxygen saturations were 89. 89! I had just checked her an hour earlier and she was 95. The days prior she had been 98 every time. I got out the second monitor to verify the number, and I sprang into action when it read the same.

In these times, I have a set emergency plan for Jaycee from her pulmonary team. I spent the next hour implementing that plan and watching her numbers slowly improve. I was thankful for the improvement but also worried. I never know if the emergency plan will improve the numbers only temporarily or long-term. I decided to pack for the hospital, because if her number got low again, that's where we were headed next. I started to panic because I had a long list of things I needed to do at home. If she did go to the hospital, we'd probably be there several days.

I rushed to complete some tasks just in case we had to leave.
Electric bill-paid.
Soiled sheets from the morning mess-in the dryer.
Clothes I may need in the hospital-thrown in the washing machine.
Work stuff-faxed.
I kept a close watch on Jaycee whose numbers were staying in the safe range. As my essential to-do list was mostly completed an hour later, I felt drained. I also felt hungry. I started craving a delicious non-Keto dish from our local Mexican restaurant. Later, I thought often about pizza and pasta. Some part of me was clearly crying out to stress eat.

I didn't succumb to it though. I had my normal Keto friendly lunch and afternoon snack. There were times when I had the thought: Forget it, eat what you want! But, I resisted. I have to teach my mind and body to react differently to the stress I feel when Jaycee is sick.

Jaycee kept me busy the next few days with medications and monitoring, but I unpacked my hospital bag that thankfully never left my bedroom. I made it through a little health scare at home with Jaycee without stress eating or consuming caffeine. It's sort of a big deal!

I fought the food demon this time and won. Next time, I hope I can be that strong again!

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! 

What I Fear When Driving my Child to the ER

The automatic door slides open. I push my daughter in her wheelchair into the building, sometimes tugging an oxygen tank behind us. The bright lights hit my tired eyes while my feet walk in a fast pace up to a counter. The staff in nursing uniforms greet me and take down my daughter's information.

I hate that I have to go to emergency rooms. Unfortunately, I have had to use them multiple times with my daughter over the years. Jaycee's combination of health problems have resulted in dozens hospital admissions for respiratory issues that have all began in emergency rooms (ER).

The biggest challenge with ERs is that the doctor doesn't know my daughter or my family personally. I have found that some doctors or staff assume that I am just some paranoid parent overreacting or that I'm at the ER for ulterior motives. Some doctors don't take the time to review my daughter's extensive history or listen to my concerns. When this occurs, my daughter doesn't get the care she desperately needs.

I have had some terrible experiences in the ER. Several years ago, Jaycee's breathing became labored while we were coming home from an outing. We stopped by a local ER on a Friday night to get her checked out and possibly get medications. We met with a doctor for a couple of minutes and an x-ray was completed. Nothing else was done. We sat there watching Jaycee's vitals on a monitor. Her heart rate was extremely high and her oxygen saturations were low. There was no breathing treatment given. No oxygen. Nothing. We sat in a small room inside a busy ER being ignored. Finally, a nurse showed up with discharge papers because Jaycee didn't have an appendicitis. Talk about confusing!

We demanded to speak to the doctor who never bothered to come talk to us again, but her shift was over. The doctor who took her place was just as confused as we were but looked at her vitals, listened to us, and called for a transport to a children's hospital. A helicopter came, oxygen was given, and Jaycee finally got the help she needed.

Even the ER at the children's hospital has gotten it wrong. A couple of years back, we took Jaycee to the ER late one night because she had a junky cough, and her oxygen saturation levels kept dropping at home. I will admit that Jaycee didn't look sick and that was part of the problem I am sure. When Jaycee quickly went through triage at the ER, her vitals were on the borderline of needing oxygen. At home, her numbers were bouncing around so staff had to watch it for more than 30 seconds to see the problem. We were escorted back to a treatment room and an x-ray was taken to investigate the cough. Jaycee was never given a breathing treatment. She was never placed on the monitor, which was highly unusual, given we had concerns about her breathing. Nothing happened! All the while, my husband and I grew anxious that Jaycee wasn't being helped!

A few hours after arriving, a doctor came into the room to discharge Jaycee. My husband and I were furious, and my husband said he wanted to talk to someone else. The next doctor entered to give us reasons why Jaycee was fine. We disagreed. He humored us and placed Jaycee on the monitor. It was then that he realized that Jaycee needed oxygen...and a breathing treatment...and ICU!

I can give you a half dozen stories that exemplify the worst of our ER experiences. I mean, let's not forget the local ER doctor who asked if my child with Down syndrome was a "mongoloid."

On the other hand, I can give you a half dozen stories in the ER that went extremely well. The last couple of ER trips have been near perfect. We were seen soon after arrival, the doctors listened to me, and Jaycee was promptly diagnosed and admitted for treatment. The nurses and doctors were all kind and tried to make Jaycee feel comfortable. These good experiences are how I wish it was every time I enter an ER.

The problem is I never know what I'm going to get. I don't know if I'm going to have to convince the doctor that my child is sick. I don't know if I'll need to take our own inhalers inside because they won't give her a breathing treatment. I don't know if I'll need to ask the doctor to put my child on a monitor or do basic tests. I don't know how the doctor will respond to me, my daughter, or my situation. All of the unknowns make me even more anxious in a situation that is already stressful.

On the drive to any ER, I get fearful and worry about my daughter's health as I try to get her medical care as soon as possible. I also worry about what will happen when we arrive. I never breathe a sigh of relief until the process has started at the ER and I can tell that Jaycee will get the treatment she needs. If not, I'll speak up and be her voice.

But, I'd rather someone take my voice seriously the first time.

Asthma, Social Workers, and an Unhappy Birthday

I'm not sure how special May 28th is to you, but it's important to me. It's the day when I turn a year older.

A couple of days ago, my age went up a year, and I spent time once again reflecting on my life. I couldn't help thinking about my birthday last year. It had a much different feeling to it.

I tell many stories in my writings, but I don't share everything. If something is painful or emotional, I wait months or years before I may decide to share that part of my life. Time has passed since my last birthday, and there is a story I am now willing to tell.

In May 2016, life was a bit chaotic. My family sold our house and moved into our new home. Much of May was spent on final touches, packing, unpacking, and all the other lovely things that go with moving. Add to that, Jaycee started to get a cold. Normally, Jaycee does a breathing treatment and an airway clearance treatment twice a day every day. When she is sick, this increases to every 4-6 hours-sometimes around the clock. For a person with obstructive sleep apnea, asthma, two repaired heart conditions, GERD, and a lung cyst, a cold can attack her lungs seriously. Therefore, I go into a heightened alert when she is sick.

I was on edge those first few nights in the house, since Jaycee was sick. Because Jaycee's communication skills are limited and she cannot do a peak flow meter which many asthmatics use, I am forced to rely on what I see and hear for myself. I also check her temperature, heart rate, and oxygen saturation levels throughout the day to see how she is trending. If she gets really bad in her chest, she may sign to me that her stomach hurts, as she cannot tell what is exactly wrong in her body. That is the only thing she may tell me in an illness, so I am left on my own.

My best friend in an illness, the monitor

Those first few days after the move, I was worried about Jaycee. I was monitoring her like crazy and hoping she could come out of this illness without a hospital admission. I had consulted with her doctor once about her breathing too.

Then at 2 am on May 18, Jaycee's breathing suddenly got worse. We went to a local ER. She was transported to a children's hospital ER. Then, she was admitted to the ICU for Rhinovirus with asthma flare up.

On the first full day in the ICU, a social worker came to see me. This is typical. Usually, they ask if I need anything like hotel information. They ask if we have transportation home and if our son at home is taken care of while we are away. This social worker visit was different.

I was taken to a conference room down the hall from my child. The typical questions started. Then it launched into questions about Jaycee's daily care. I recited her medicines from memory. She marveled that I could work and keep track of all of Jaycee's needs and appointments.

Then the questions were directed to the present illness. When did you take her to the doctor? Why didn't you take her back when she got worse? Did you give her this or that rescue medication? Did you try this at home? Why didn't you call the on-call pulmonologist? Where is your husband? Your daughter is in ICU, you don't seem very upset about it. Are you aware how sick she is?

This was a long conversation. By the end of it, I was convinced the social worker was going to make a hotline call on me. Had Jaycee had showed pneumonia, this conversation wouldn't have happened. But, because she merely had an asthmatic reaction to a virus, my parenting was called into question. Now, I wanted to cry and be upset. I called a few of my friends and Jaycee's teachers to prepare them to be character witnesses for me if the need came.

I am like my favorite Seinfeld character, George Costanza. I thought of a million comebacks and things I should have said after the conversation. One of these included: Maybe if your ER hadn't stopped the continuous albuterol that the first ER started that helped her...And maybe if your ER hadn't let her go hours without a breathing treatment to "see how she would do", she may be in a better spot right now. But, I didn't say it. Frankly, I had been up for about 30 hours straight before this and wasn't thinking sharply.

Fast forward a bit, Jaycee was discharged on May 23rd. (But not before the same social worker came by to tell me to take Jaycee to the doctor more often when she's sick.) A few days later, I had to do the usual hospital follow-up appointment with our local doctor. The NP we usually see was on vacation, so Jaycee was scheduled with another doctor who didn't know her or me. Let me insert here that I had to beg Jaycee to get out of the van to see the doctor and practically pull her inside the clinic building because she kept signing, "Doctor. Hurt. Scared." We were both anxious to be there, and my stress level was high from just trying to get Jaycee into the building.

The doctor had read the hospital paperwork and checked Jaycee over well. Everything was going well. Before we left, he said, "I see they gave you an asthma action plan. That's good so you'll know what to do next time."

To which I replied (in near tears), "She's had a plan for years. I know what to do. She gets sick very quickly. I can't change that."

I don't remember what happened next except I found myself at home crying.
I was exhausted from the hospital and post-hospital care, which included round-the-clock breathing treatments that I set alarms for and completed. I was trying to adjust to life in a new house along with the rest of my family. And, now two different professionals voiced their concerns over my ability to care for Jaycee properly in an illness. I wanted to curl up in bed and never come out.

A day later, it was May 28th. Happy birthday to me! I wasn't feeling it at all. I was stressed and anxious. I was sad and confused. My husband was off work for my birthday and offered to take me to my favorite restaurant. Jaycee was still doing breathing treatments but we were able to go quickly to eat between treatments.

I cried on the way to the restaurant as I told my husband everything I was feeling. The kids were with us, so it was one of those contained cries with a lot of heavy breathing to try to mask the crying. He was ready to go punch a few professionals for me, but he didn't. He told me not listen to them and began to detail all the many things I do for Jaycee. He assured me the hospital admission was not my fault, which I knew at one time. We sat in the Chili's parking lot waiting for me to pull it together so we could go inside and eat.

Me faking a smile at Chili's on my birthday last year

I ate the delicious Chili's skillet queso and looked at my daughter who was sitting in a restaurant and not a hospital bed. That was a reason to celebrate!

There are times in my life that I can't wait to be over. I am certainly glad those days around my birthday last year are history. I do many, many things for my daughter to help her progress and stay well. I felt horrible last year when I was given the impression that I had done something wrong. Fortunately, I didn't need character witnesses because a hotline call was never placed. But I was on edge for a few months hoping Jaycee wouldn't go back in the hospital for an illness and force me to meet with that social worker. (Thankfully, she made it almost a year before going back, and there was no social worker sent to question me!)

My birthday this year was much less dramatic. Thank God for that! This year, the smiles in the photographs were real, and it really was a happy birthday.

The Two Versions of a Hospital Stay

April 5th started out like any ordinary day.

Jaycee woke up once again with a junky cough that we had been treating with frequent breathing treatments. She had finished one course of steroids and antibiotics about a week prior for this same cough. I had checked Jaycee on her monitor that morning which showed her heart rate and oxygen saturations numbers where they had been running. I got the kids off to school and went to work for a few hours.

Before the school day would end, things would change drastically with Jaycee's breathing. Jaycee spent the next three nights in the hospital. It's hard to recount everything that transpired over that time. The hospital is able to condense the illness into just a few paragraphs in her thick medical chart.

Here's the hospital's version of that stay from her discharge report:

Here's the full story of what happened:

Jaycee's mother was driving to school to watch her son in a class program. Jaycee's teacher called with concerns about her breathing. Jaycee seemed tired and her oxygen saturation numbers (taken by Jaycee's portable monitor) was lower than the previous days. Jaycee's mother arrived at the school a few minutes later to check on her. Jaycee was given her inhaler again but her oxygen saturation numbers were still in the safe zone. Jaycee then vomited but otherwise seemed in no immediate danger.

School staff worked to clean up Jaycee while her mother attended her son's short program. About 20 minutes later, Jaycee's mother arrived back in her classroom to take her home. Jaycee's arms were splotchy and her lips were discolored. The monitor now showed Jaycee was having difficulty breathing and a third breathing treatment was completed at school. Jaycee then became incontinent.

Jaycee was taken to the emergency room by her teacher and her mother. Arrangements were made for Jaycee's brother before they left school. Initially, Jaycee's numbers looked better at the hospital. After some time, her heart rate and respiratory rate increased while her oxygen saturations started to decrease. Jaycee was placed on oxygen. An IV was placed, blood was drawn for labs, and a chest x-ray was taken. Jaycee continued to be incontinent, throwing up, and started to run a fever.

Jaycee's mother and teacher were informed that Jaycee was septic and would be transferred to a Children's hospital. Jaycee's mother was upset because Jaycee had been septic in 2013, which required a 4 week hospital stay and intubation to recover. IV antibiotics and steroids were started, fluid boluses were given as well as breathing treatments. Jaycee's father was contacted by phone of her change in status so that he could come straight to the hospital. Jaycee's parents immediately contacted people who would start praying for Jaycee.

Almost 2 hours later, the ambulance arrived to transport Jaycee. It had been delayed due to a heavy rainstorm. Jaycee's mother rode in the ambulance while her father drove the family's vehicle to the hospital.

Jaycee arrived at the pulmonary wing of the hospital around 9 pm. Her vital signs were much better but she still needed oxygen and frequent treatments. The doctors explained why they felt she was not septic and believed her symptoms were probably due to acute respiratory failure. However, if she did have sepsis, then her symptoms would return 24 hours after her antibiotics were first given. Jaycee's parents were hopeful but would feel more relieved after the 24 hour mark that came and went without a change in status.

Jaycee received breathing treatments and vest airway clearance round-the-clock during the admission. Jaycee had many desaturations the first night. She needed oxygen day and night initially but was able to be weaned off 24 hours prior to discharge. Jaycee did test positive for a cold virus but her chest x-ray was clear. Jaycee's parents stayed at the hospital and were involved in her care. Jaycee was discharged on April 8th on a long steroid wean and round-the-clock treatments.

***

The hospital's version remarks only on the major medical issues and interventions. My version acknowledges the impact on Jaycee and the people around her.

A hospital stay affects a family in many ways. My son suddenly found himself in his grandma's care. My husband and I felt the chaos of an unexpected admission and fear of what would happen to Jaycee. Jaycee was scared too and exhausted. Things didn't go back to normal immediately once we were all home.

A few days after leaving the hospital, Jaycee had to be coaxed out of our van for the follow up appointment with a local doctor. Even after she left the van, she was scared and reluctant to walk inside the clinic. I had to reassure her that nothing bad would happen today and we would go home right after the doctor saw her.

And so, there are two versions to every story. An unexpected health illness does more than just threatens a person's body. It disrupts lives. It causes emotional issues. It can separate families temporarily.

A hospital stay is much more than a few sentences in a patient's chart. It is part of a person's life story.

My Fight with Germs & Toothpicks

The last few weeks at my house have been... Which adjective to choose?

Germy would be accurate since 3 out of 4 people have had some sort of illness in the house. Exhausting would be another word to strongly describe how I have felt after taking care of my daughter Jaycee during her respiratory illness that has required many extra breathing treatments, vest airway clearance, and other medications. That leads me to stressful, which is how I felt watching numbers on Jaycee's monitor -willing them to stay high enough to prevent the hospital. Chaotic also describes the days and nights while this occurred since everything got disrupted by treatments.

Jaycee doing vest airway clearance after a breathing treatment.

After a long day in the middle of this illness situation last week, I was preparing the evening meal for my family.

As I reached for the colander to drain some delicious noodles, I accidently hit an opened box of toothpicks. Before my eyes, I saw dozens of three inch tiny wooden picks fly through the air. With the colander in hand, I debated on launching it across the room momentarily. Normally, I don't throw things. But in that moment, for a second, it was a thought I had. After all, I was in the kitchen alone. No one would have seen me do it and maybe it would have made me feel better for a split second.

Instead, I took that plastic blue colander and set in gently on the counter. Then I proceeded to pick up toothpicks from the floor, counters, stove, and a few other places they seemed to have managed to settle in.

After I threw the toothpicks away, I felt God say to me, "Good job."

Excuse me?

I was steaming at the mess I made and on the verge of a breakdown because the demands of the day were just about too much. I didn't understand what I had done good.

Then I pictured myself throwing that innocent colander that was in my hand a few minutes before and how I had the self-control to set it down and not give in to anger.

It may seem small, but I had just won a battle.

As a Christian, I feel I am constantly making decisions and moves that bring me closer to God or not. A thought, that was not of God, entered my mind, yet I resisted it. I decided not to throw the colander and go on with life.

There are times when I don't give myself enough credit. I get upset that I allow a sickness to bring feelings of stress in my life. I get frustrated with fears that pop in my mind when I hear Jaycee's loud breathing. I wonder if and when I am going to handle these situations better. Even though I have work to do, I'm not doing everything wrong.

Sometimes, I need to acknowledge that a day was hard and I did the best I could.

And other times, I need to celebrate the fact that I didn't lose my cool when toothpicks go flying.

What about you? I bet you have had a small victory in your life. Take time to celebrate that moment this week.

Odd Things I do in the Hospital as a Parent

The last couple of weeks have been chaotic. First, my family moved from the only home we have known together. If you have ever moved, then you understand the headache and pain of that.

If that wasn't enough to deal with, Jaycee started getting cold symptoms during our move. I increased her medications and hoped she would stick this one out at home. However, Jaycee's cold abruptly turned into an emergency on the 4th night in our new home. Off to the ER at 4 am we went! We have just returned from a 5 night stay in the hospital which included time in the Intensive Care Unit. 

When Jaycee is in the hospital, I assist with her toiletry needs and sponge baths. I order her food and help her get drinks. I hold her down for blood work and calm her when she's protesting another vest treatment. I give her oral medications, because she takes them better from me than the nurse. I watch her monitor and talk to doctors. This keeps me busy, tired, achy, and at times stressed.

Life with Jaycee in the hospital is just different. When I stay in the hospital, I find myself doing things I don't normally do. Some of these are coping mechanisms meant to distract myself from the chaos around me. Others are done out of boredom when things are going better for Jaycee yet we are sitting in a small room with nothing but a TV and internet.


Here's a few things I do in the hospital that I never do at home:


1. Drink sodas anytime day or night.
At home, I limit my delicious soda intake and would never indulge in them in the morning. But those limits are not present in the hospital.

2. Take showers in the middle of the day.
Morning showers are impossible due to Jaycee's needs and morning rounds. So, I tend to take a shower whenever Jaycee is eating lunch or is doing a long breathing treatment and doesn't need to be entertained by myself. Just finding twenty minutes to sneak out and take a shower is an accomplishment in the hospital.

3. Eat two candy bars in one day. Can you see I eat and drink my emotions?
Sad but true....Not even going to defend my actions on this one.

4. Binge watch an entire season of something on Netflix.
I never have time at home to watch a complete season of a show in a day or two. My husband and I have to block out time to watch a two hour movie at home and plan for interruptions. In the hospital, there are days that are thankfully boring. Jaycee might be napping or engrossed in a movie, so I start watching Netflix. Sometimes, I can't sleep at night or get woke up from an alarm causing me to watch more Netflix. The shows are a good distraction for me especially when Jaycee is making improvements. *She enjoys lots of Netflix time in the hospital too!

5. Spend an absurd amount of time on social media.
I can only watch Netflix for so long, then it's time to read my feeds from Twitter and Facebook. If you posted something on FB during an admission, I most likely read it (twice). I was so bored at times during this admission that I even went through my Google Plus feed! Being bored is a good sign, it's a sign that Jaycee is coping well in the hospital and that her care is going according to plan. I am glad I had bored moments with this admission because some are just plain scary and not boring.

Thankfully, we are home now. There are no more Pepsis at 5 in the morning. The showers are back to the evenings. I don't have access to candy bars. And, my time for Netflix and social media is back to a healthy normal, limit.

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.

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.

The Monitor Effect

The last few weeks I have spent too much time staring at a screen. Not a fun screen, like a television or a computer. It's a necessary but annoying screen. It is the dreaded......oxygen saturation monitor.

If you have been reading my blog, you know Jaycee's been battling respiratory issues for literally 2 months now. She already has obstructive sleep apnea, which is treated with a bi-pap, and has asthma, so any hiccup with her respiratory system can turn into something serious or something that lingers on and on. We've had 3 trips to the hospital in the past 2 months. There are times in her life when things are crazy like this. But, she did have 10 healthy, hospital free months prior to all of this.

Back to the monitor, I have a love/hate relationship with this monitor. We got it a few years ago when she was having so many breathing issues. It was hard to be at home with her wheezing and deciding on if she was truly bad or if she just sounded bad. The oxygen saturation monitor has helped us easily decide whether or not we need to take her to the hospital. Under 90% (the red number), she needs oxygen and we need to get to the hospital. For that part, I'm thankful to have the monitor.

In 2011, this monitor probably saved her life. Jaycee was acting weird and we didn't know what was wrong. I hooked her up to the monitor just to help try to figure out what was wrong. Her heart rate (the green number) which is set to alarm when it hits 140, read 220! This monitor caught her tachycardia and we immediately rushed her to the ER where she was transported by helicopter to a children's hospital.

Sometimes, the monitor drives me insane though. If I see 91 or 92% during the day, it starts to worry me. I see that she's getting close to the 90% cutoff and I get nervous. Sometimes, a spot check to see where her oxygen level is leads to me checking her too often because I'm nervous.

Jaycee has been having trouble breathing at night lately, so she wears this monitor while she's asleep. Typically, the monitor is in her room next to a baby monitor. The receiver is in our bedroom. Throughout the night I'll hear the beeping. Sometimes, she alarms because the sensor isn't reading. Sometimes, it alarms because Jaycee has thrown the bi-pap off and her levels have dropped to 89%. I hate the 89% alarms when everything is fine yet she's dropped for an unknown reason. Fortunately, repositioning usually helps the number to go up and all is well.

Last weekend, we spent a couple of nights in a hotel. By the time, I lugged up the monitor, bi-pap, and meds, I was rethinking the trip. Since our beds were close together, her monitor was placed on my nightstand. Bad idea! Jaycee had a rough night. She started out at 90% with her bi-pap on. Not good... I just kept staring at the monitor wondering if she'd worked her way back up to the upper 90s or if she would dip lower and we'd have to go the hospital. It's hard to fall asleep when 90% is staring me in the face. I wanted to shove my husband who was peacefully snoring next to me knowing what her oxygen level was. Maybe his 13 hour shift at work helped him. Maybe that's what I needed!

Actually, what I need to do is to have faith and calm down. Monitoring her to keep her healthy is great. But if the monitoring is causing me stress (and it is), then it's not a good thing. I need to be able to separate the two and not get so emotional when things look shaky. Fear causes me to assume the worst will happen. Why can't I assume she'll get better and her numbers will improve? Why does my mind instantly go to the negative? That's the million dollar question. And that's what I'm trying to work on right now.

Too much thinking in the hospital

We came home from the hospital this week on Sunday. Being in the hospital is hard for so many reasons. First and foremost, Jaycee is sick and worries about her health and future try to surface again. I spend most of my time in the hospital staring at a screen that displays her oxygen saturation level and pulse. I try not to look at the screen but I do and wrongly make predictions about when she will be discharged based upon her numbers hour by hour.

Most of the time, Jaycee handles being in the hospital well. But there are moments when you can see the sadness and frustration in her face. The nurse and I took her for a walk one day while she was still on oxygen. We were hoping the walk would help clear her pneumonia and get her coughing. But, mainly the walk made her mad. She thought she was leaving the hospital. She saw the entrance to the hospital and said "bye" over and over. When we told her no, she cried and refused to move. It felt great Sunday to put her shoes on and tell her that we were really going "bye" this time. She understood it too!

Being in the hospital reminds me of how different our lives are from most people. Jaycee's had a few surgeries and illnesses that have resulted in the front desk clerk, several nurses, and a few people in the ER to remember us by name. (That's never a good sign.) I am well aware that back home, Jaycee is probably the "sickest" person in her class and most likely her school. Most people can't relate to our hospital encounters. But when I'm at the hospital, there are countless other moms and dads wondering around with that same worn out expression on their faces. I feel like I'm not the only parent in health battles with their child. I'm reminded we aren't some rare case. There are many other parents here whose child is being poked, tested, discussed in rounds, and will most likely return to the hospital in the coming months. In fact, there are other children in the hospital who are much worse off than us and who will be in the hospital for a much longer time. When I have brief encounters with these people, I feel guilty for the complaining I've done. Things are bad, yes; but for other people, things are terrible. Sometimes, when I walk with Jaycee in the hospital thinking about how much worse another child appears to be, I wonder if those "worse off" parents have the same thought. But...maybe I just have too much time to think in the hospital.

We are fortunate to have a core group of people who support us in many ways whenever Jaycee is ill. Every message, email, text, visit, and gift is like a much needed boost to our souls. You can't go through things like this on your own. One message told me I was a strong person. I read this a few hours after I had a complete breakdown and yelled at my husband for commenting on my parking job. (We know we have stress induced arguments.) I don't think I'm that strong. I have to be a certain way because the situation demands it. At the hospital, I rarely see another parent crying. When I do, it's usually a few tears and not a full blown crying fit. I see many other parents "handling" the situation like I do. And let's face it, there's not too many good places to cry in the hospital. Once a few years ago, I found what I thought was a good place to go cry on the phone when Jaycee was in the hospital for RSV. I think 5 people walked by me in 10 minutes. I decided it wasn't a "safe" place to let my feelings out. I have yet to find such a place like that in the hospital, so the emotions stay in until they erupt out unstoppable at a hotel or at home.

The truth is that I have to be brave for Jaycee, especially now that she's old enough to read my reactions. There are times I break down. I like order and routine. The hospital admission makes my life anything but routine. I get scared for my daughter. I feel bad for my son who is 2 hours away. When he visits and we're alone, he tells me that "Sissy's really bad. Sissy's really sick." I scramble to reassure a preschooler that his sissy is fine. I tell him to pray for sissy.

 But I try to keep encouraging myself in the word. Sometimes, I have to read the Bible or put on worship music to keep myself focused. Otherwise, it's easy for me to go in a downward spiral that does my family no good at all. The Bible does contain my hope, peace, and promises that I can rely on. The Bible does contain the ultimate truth and those are things I try to stay focused on. Like this:

Acts 17:25 Nor is He worshipped with men's hands, as though He needed anything, since He gives to all life, breath, and all things. (NKJV)

Psalm 34:3-4  Join me in spreading the news; together let's get the word out. God met me more than halfway, he freed me from my anxious fears. (Message)

Galatians 5:1 Stand fast therefore in the liberty by which Christ has made us free, and do not be entangled again with a yoke of bondage. (NKJV)

Psalm 27:1 The Lord is my light and my salvation; Whom shall I fear? The Lord is the strength of my life; Of whom shall I be afraid?

Going to the hospital with my special purposed child

Three weeks ago, we brought Jaycee to the ER for her asthma. It was a short 2 day stay. She was discharged but never got 100% normal.

Two days ago....Jaycee obviously is having difficulty breathing. She is bent over, which is always the position she takes when she can't breathe, and her skin is very modeled. Breathing is labored. I hate being at home alone when this happens. But, it's 9 am so my husband and the close family members are at work. I'm trying to give her medicine, call the children's hospital, and hook her up to her oxygen saturation monitor all at the same time. Next, I roll out the oxygen tank just in case we need it. I start running around the house grabbing items she'll need in case she goes into the hospital. I'm tired and panicked. I can't think. Three weeks ago, I was fairly calm and level headed when I was doing this but today I'm not. My 3 year old son asks me to play with him and read to him. I gently tell him "not right now, sissy's sick." But I want to answer him harshly and tell him to go upstairs while I'm being panicked but I stop myself. It's not his fault. It's not Jaycee's fault either. I can't control what happens but I can control my reactions.

I load the kids, the oxygen tank and monitor, the bags, diapers, and miscellaneous items into the van in a rush. I leave the house a mess. There are clothes in the washer and in the dryer. I have clothes drying on the clothesline. I have bills that need to be paid and checks that need to go to the bank. But, in an instant the busyness of everyday life halts. The only thing that matters now is getting my sick little girl to the hospital as quick as I can.

I make the trip to the hospital. I don't get far when I have to pull over and put oxygen on her. It's just 1 liter though so this isn't too bad compared to other trips to the hospital. It takes an hour to get seen in the ER after we arrive. She is immediately put on 2 liters of oxygen. She hates the ER. She remembers it. She doesn't want to get into the bed. She wants to stay in the stroller and we let her for the moment. She is given lots of breathing treatments and an x-ray. She cries a lot and says "mama" when she's scared. It makes me feel good and sad at the same time to hear that. An IV is needed. There are 4 of us holding her down so a nurse can put it in. I have flashbacks of other moments like this. I always say I'm not going to help hold her down anymore but I always do. I at least feel better if it's my hands she feels on her and my face she can see telling her that things are ok.

Hours go by in the ER, 8 to be exact. ICU or the regular floor is being debated and no one can decide. Finally, they do and we head to the asthma floor on the hospital. Jaycee recognizes this place and feels totally comfortable here. There are several nurses and staff who have taken care of Jaycee here over 7 years. My adrenaline is gone. I'm tired now. I'm in disbelief that we are here again and at the same time not surprised at all we are here given her symptoms in the previous three days.

And now.....it's been almost 48 hours since all this started at the house. Barney is singing about butterflies while Jaycee's droopy eyes are glued to Barney's every move. A cannula in her nose is giving her a small amount of oxygen. A sensor on her toe lets me know how well she's breathing. She is still sick but getting better. This is our 13th stay in the hospital for an illness together. I count myself fortunate to have another day with her smile and love in my life. I hope this is the last trip to the hospital but I am doubtful that it will be. I have written up Psalm 27: 1 on our dry erase board (The Lord is the strength of my life). We can keep going through these illnesses and hospital stays knowing where our strength comes from.

Prayer for Lungs

Earlier in the week, I prayed about what I should blog this week. I felt I should share the verses and a prayer I have been saying for my daughter, Jaycee, concerning her lungs. In the past few months, I have focused prayers for her lungs since her asthma and obstructive sleep apnea have really impacted her health. Here are two verses I pray regularly:

As the Lord God formed man of the dust of the ground, and breathed into his nostrils the breath of life; and man became a living being. Genesis 2:7

The Spirit of God has made me, And the breath of the Almighty gives me life. Job 33:4
             Lord, just as you formed Adam and gave him life, breathe into my child. Give her strong breath all night and all day. Keep her lungs open and working perfectly as you intended them to be. God, you are the source of all life and your breath sustains my child. I don't have to fear asthma or sleep apnea because ultimately her breath comes from you. These things are not more powerful than you God. Let my daughter's airway stay open and let her breath come easily. Amen.


It's funny how God lines things up, preparing the way for our lives without us knowing it. I started working on this blog entry just before Jaycee had a severe asthma attack Tuesday night. She went into the "red zone" on her asthma action plan (blue fingers and toes, low oxygen saturation levels). We stabilized her at home before taking her to the hospital. She was in the hospital less than 48 hours, which is the shortest time she's ever had in the hospital for a breathing issue (pneumonia this time).

A hospital trip always does a number on me mentally. Fear tries to invade my mind and doubt tries to creep in. It tells me to give up, not to pray, to worry about Jaycee's health and future, and on and on. As I tried to go to sleep last night in Jaycee's hospital room, my mind started trying to give me a dozen reasons to be afraid when Jaycee goes home with her breathing still not perfect. I often let these fears take over and leave me spiritually immobilized. But I heard God tell me, "Stop. Stay focused. You can't risk being distracted by fear."

I thought about this blog entry I was going to write. It was a confirmation from God to keep praying and pressing no matter what the circumstances around me are. This is me trying to be obedient and staying focused minute by minute and hour by hour.


For more like this, read More Prayers for Lungs.

Ripping up Pictures

My pastor talked about something at church Sunday that I'm still pondering. He talked about the pictures we create about a subject and how that leads us to pray a certain way. He gave the example of revival. Ten different people have 10 different pictures of what revival looks like. Some may think it's when dozens get saved, some view it as happening when big miracles take place, and others will picture revival as long wild services that last hours. He said that people will pray for whatever their vision of revival is instead of praying for what God wants to do. Then people will judge whether or not revival has come based upon those pictures we have. So he went on to talk about how we should rip up some pictures we have in our minds that prevent us from seeing God and praying the right way.

I started thinking about some pictures I have had to mentally rip up over the years. I had to rip these pictures up so I wouldn't be upset and bitter. I had to rip up the picture I had of a healthy baby that I prayed for during my pregnancy. If I hung on to that picture, I'd still be upset. I had to rip up the picture of the house I  thought I'd be living in. This may sound really trivial but when we got our house we thought it was our starter house. Yet 10 years later, we are still here with no thoughts of leaving. Jaycee's medical expenses have erased plans for something different. Our house isn't terrible but it's small. Every drawer, corner, and both closets are packed full. I'm not a collector or hoarder but it feels like it in this house! For awhile I got really agitated when I would put laundry away and would have to cram it in the drawers. I just got upset because reality was not matching up with my picture. Somewhere along the way, I ripped that picture up and became content with where I was. I don't have a picture of a different house now. If it happens, it happens; if not, that's fine.

This week I was thinking about the picture I have of Jaycee's health. I pray often for her lungs (asthma and sleep apnea) to be strong and have good breathing. This week God started dealing with me about my picture of her health. I have this fantasy picture that Jaycee's "good" health would mean there's no bi-pap needed for her apnea and there's no more inhalers for her asthma. My picture of a healthy Jaycee hasn't happened yet because she still needs meds and a machine to help her breathe well. There's still oxygen in her room for when she's having an attack. I look around and see she's not "healthy." But God has showed me that my picture is wrong. I'll never be thankful and grateful if that's the picture I've set for her. It's not that I can't prayer for her to be medicine and machine free one day but I can't let that prevent me from seeing what's happening now. Jaycee has had 2 colds this year and it never went to her lungs. That is highly unusual. I can always count on a cold to turn into more than just a cold. She has been hospital free for almost 10 months. That's the longest stretch she's had in 2 years. God is answering my prayer for her lungs to be strong and for her to be healthy. I just couldn't acknowledge God working because my picture wouldn't allow it. 

So I encourage you to think about those mental pictures you have and decide if you need to rip them up so you can see God moving in your life.