Wednesday, August 28, 2013

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.
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Thursday, August 22, 2013

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.

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Wednesday, August 14, 2013

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!

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Tuesday, August 6, 2013

10 Essentials for the Hospital

Well, it sounds like a broken record but....we spent the weekend in the hospital with Jaycee again. Thankfully this was a short admission. After all the ins and outs of the hospital over the past 7 years, here is a parent's top 10 essentials you will need while your child is in the hospital.

10. Tennis shoes: Don't make the mistake of wearing sandals or flip flops on your way to the hospital. I did this once and 8 days later in the hospital, my feet just plain hurt! You may look dorky, but walk out your door in tennis shoes.
9. All the necessary toiletries (soap, shampoo, etc.): After all the admissions now, I keep a cosmetic bag stocked with everything we need so I can grab it quickly in emergencies instead of trying to remember every little thing.
8. Extra clothes: This kind of goes without saying. I no longer pack clothes to serve as pajamas. I just wear something for 24 hours and then change. You don't have room to pack too many clothes.  And you often don't have privacy to change conveniently.
7.  Headphones: I have just discovered this as an essential! Headphones are perfect when you have a roommate that watches tv all night or you have a crying roommate.
6. Ibuprofen: For all the aches and pains when you aren't sleeping at all or sleeping in chairs and other odd positions
5. A laptop or kindle: I use these to update Jaycee's caringbridge website so that I can keep our family and friends updated. It comes in handy for movies or reading material when the admission is a week long. (You need something to do with your time.)
4. A Hepatitis Shot: Not really, but I feel like I need this after I shower in the parent lounge shower. Gross!!!
3. Your child's health history: Two years ago, I gave up trying to remember surgeries and admission dates and her diagnoses. I typed it all out and made a health history sheet, which I carry in my purse at all times. In an emergency, it's hard to remember everything!
2. Money: It's expensive eating in the hospital or at least it is at our Children's hospital. Never forget to grab some cash!
1. A phone charger for all the calls and texts
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Thursday, August 1, 2013

The Right Outfit

This morning something different happened. After Jaycee woke up and did her morning routine, she came in her room to get dressed like normal. Every day I pick her clothes out and lay them on the bed. She will put on what she can and I help her with the rest.

But today, she searched through and found the underwear she wanted to wear. Then she shuffled through her drawer to find just the right shorts to wear. Then she stood at her closet door waiting for me to open it.

"Are you picking out your shirt today?" I ask as I open the door to her closet.

Jaycee reaches in like she knew what shirt she had in mind to wear. I think to myself that if she picks out a matching outfit, it will be a miracle.

She pulls out a pretty gray shirt with pink flowers on it.

My daughter just picked out her first outfit by herself. It doesn't look too bad either!

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