From the Toy Store to ICU

Saturday afternoon, I took my kids shopping at Toys R Us. Jaycee had a great time picking up toys, playing with them awhile, and throwing them down. It was hilarious. We had such a great time going up and down the aisle. I loved seeing what toys she was drawn to.

Then came Sunday. What started out as a little sickness turned into a huge ordeal. We got her to the emergency room. She was feverish, tired, having difficulty breathing, and vomiting. In a short time, she was in the intensive care unit (ICU). In a few more hours, her monitors started going off. Her blood pressure went critically low. Before I knew it, I was sent out of the room so Jaycee could be intubated. This was a first for us.

And so this nightmare that started on Sunday has continued on until today (Friday). She's been diagnosed with pneumonia, rhinovirus, septic shock, and acute respiratory distress syndrome. Jaycee is the sickest she's ever been. She still has the breathing tube and has been sedated this entire time.

I haven't heard my little girl's sweet "mama", seen her smile, felt her kisses, or watched Barney with her. I miss her. I have cried, prayed, given her pep talks, and tried to keep it together.

Life is so precious. Every moment is a gift. You never know when life will change in an instant.

"Talking" with Jaycee

When I talk to my daughter, our conversations are a little different. She's 7 years old but only speaks about 12 words or so. She signs, gestures, and makes noises to communicate a variety of things. For the past couple of years, Jaycee has also used a speech generating communication device. Her device is the Vantage Lite made by PRC. Here's are two short videos of conversations with Jaycee: 

Skype & the Nonverbal Child

What do you do when your basically nonverbal child wants to use the phone?

Well, first you call up grandma and let Jaycee grunt noises into the phone. Grandma asks yes/no questions which Jaycee responds with "uh." Grandma asks questions using the couple of words she can say. "Are you with mama, Jaycee?" 

Jaycee says, "mama," if she's in the right mood to respond with a word.

As grandma talks, Jaycee listens and smiles. Grandma can't see Jaycee's expressions. She hears silence. Finally, grandma says, "Is she still there?"

So, that is how the past few years of phone calls have went for Jaycee.

And this year, I discovered Skype and video calls have changed our life.

Jaycee lights up when she can hear and see her grandma. Jaycee can talk to grandma in sign, using her communication device, or words. Grandma can ask a variety of questions now that other options are available with the video. Grandma can see her facial expressions. Grandma can see if Jaycee leaves and doesn't have to ask if she's still in the conversation. The conversation isn't so one sided now.

I initially got Skype because my husband and I took a trip earlier this year. I couldn't go 5 days without seeing my kids, so Skype seemed like a great idea. But since then, I've used Skype when Jaycee says she misses her grandma. We used Skype when she was in the hospital for a week this summer. She was able to see her cousins, grandma, and brother. It was nice because her brother could see us in the hospital too through Skype. She was able to Skype with her teacher while in the hospital too!

At first, I got Skype for me, so I could see my kids. But, Skype has opened up so many doors for Jaycee. I think Skype is essential for a child who doesn't have words for the primary communication mode.

Overcoming

Sometimes you see something at the right moment and you feel as if many things in the world have lined up just for you.

I had a restless night as I was wrongly worrying about Jaycee. She'll been battling illnesses for weeks, and this mama is tired of seeing her little girl sick, unable to play outside, and unable to attend school. I was upset and anxious.

Then I saw the Overcomer video on GMA this morning. It was as if God was speaking to me on a morning when I was ready to quit and let fear and anxiety take over. I'm not going to quit. Watch it for yourself!

Mandisa's 'Overcomer' Music Video World Premiere: ABCNEWS.COM - The gospel star features Robin Roberts' recovery in her new video.

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.

A 4 Year Old Miracle

Last week, my "baby" celebrated his 4th birthday. During our nightly prayer time, I often tell him that he was an answer to mommy & daddy's prayers.

Let's go back 5 years ago.....
Jaycee is a toddler and we're ready to have another child. I prayed and prayed to have the strength to get pregnant again. Medically, I had no reason to be scared. There was only a 1% chance of Down syndrome occurring again. I wasn't worried about having another child with Down syndrome. I was worried about other things. Sometimes it was a baby with a cleft palate. Sometimes I was convinced I would have conjoined twins.  I'm laughing as I type this. My thoughts weren't rationale. Fear had rooted itself in my soul and was trying to steal my peace and joy. Statistically, I knew things were in my favor.  But statistics don't mean much when you have a child who has defied a few statistics already.

I prayed for a healthy pregnancy. I had other people at different churches pray for me. This was even before I was pregnant.  Months went by and finally I had a positive pregnancy test. Around 7 weeks, we saw the heartbeat on the ultrasound. It was real. We were on this journey again. Then I started spotting. I did this with Jaycee so I was nervous but optimistic. At 11 weeks, the cramping and bleeding were obvious signs that this baby, whose heart was beating a few weeks ago, was gone.

I was sad, upset, felt ripped off, and discouraged. The first time I saw Jaycee after the hospital, she was holding a baby doll and I wanted to have a complete breakdown.

More statistics were given. This is a fluke, said the doctors. Many woman have them. You are fine to try again in a couple of months. My brain was telling me that 2/2 of my own pregnancies did not turn out the way I expected them. I prayed and cried and sought God. I tried to fight fear off that was telling me to never try again. 

When the time to try came, I told my husband that we just have to start trying before I chicken out. This time, we were pregnant again right away. I tried not to get to excited about it until after the first trimester. I was relieved a little after the ultrasound showed only 1 baby. No chance of conjoined twins! I held my breath the rest of pregnancy. I was happy and tried to think positive but there was still a small part that wouldn't be relieved until he was in my arms.

That moment came. He was fine. I was thankful. I beat my own statistics.

I write this to encourage you.... Don't give up on your dreams. Don't allow fear to keep you from receiving a blessing. Don't give up on God. So thankful for 4 years with my miracle.

A Special House Tour

Today, I'm taking you on a tour of my little house. My house has differences than yours possibly because I have a special purposed child living in mine.

 

This is the door from our house to our garage. A few months ago, I posted the stop sign on the door for Jaycee. Given the opportunity, Jaycee will run out the door and never look back. It's a safety issue that she doesn't seem to understand. After watching an episode of America's Super Nanny, which featured a boy with Down syndrome running out of a house multiple times a day, I copied the stop sign idea. The Super nanny's sign read: Stop. Ask first. My sign reads: Stop. Ask mom.

Did the sign work? Well now I tell Jaycee to open the door and go out to the van and she won't. She'll wait by the door until I open it. I'm not complaining. She's just doing what the sign says!







Welcome to our kitchen/pharmacy. This is where we draw up medicine, mix laxatives, and crush pills. Bi-pap parts, nebulizer masks, and syringes are all cleaned here too.



 Here's Jaycee taking a nebulizer treatment in our living room/treatment area. Yes, our floor is littered with toys thanks to my son. Throughout the house, you'll find random things that serve a therapeutic purpose. Hence, the red exercise ball in the background, which we used this summer for gross motor activities.

 Welcome to my bedroom. (And my husband's) The monitor is on every night. At 7 years old, we still have to use a baby monitor from time to time. It's jolting to hear "beep-beep-beep-beep" through the monitor which means she's having an apnea episode. Under our bed, we store oxygen bottles that Jaycee uses in respiratory emergencies. Where do people usually store 4 oxygen bottles in a small house anyway?

Here's a shot from Jaycee's room. Her bi-pap mask is hanging off the bed ready to use each night. In the corner, there's a giant oxygen machine. I hate this machine! I had to remove toys out of her room to make room for this machine. That seems unfair, I know! We rarely use this machine because we use the oxygen tanks. But, our supplier is required to have 2 forms of oxygen at our house so we always have a back up.

Finally, this is Jaycee's messy closet. We don't have really have many closets in our house, so excuse the clutter. There's an oxygen tank in the front ready for an emergency. The Tupperware drawers hold a bunch of miscellaneous medical supplies: stethoscopes, medicine, nasal cannulas, sensors for the oxygen saturation monitor, nebulizer parts, tape, bi-pap masks, etc. This thing is crammed full of stuff we need to keep around. You'll also see bed pads and night diapers in the closet too. Needless to say, this closet is always locked.

 

So there you have it! There's our special purposed house tour. Hope you enjoyed it!