Wednesday, May 13, 2015

Life After a Near Miss

About 1.5 years ago, Jaycee was fighting for her life.

It started in September 2013. (I blogged during that time, so if you want to know what I was thinking and experiencing, look up those dates on here.) I took Jaycee to the emergency room for breathing difficulties. She had already been admitted in June, July, and August that year already for breathing issues. So, Jaycee was on a bad streak. The emergency room led to the Pediatric Intensive Care Unit (PICU).

First, she was diagnosed with rhinovirus, which is basically a cold virus, and pneumonia requiring oxygen support. Then without warning, her blood pressure dropped. That was beginning of a 4 week nightmare for us. Over time, we learned that septic shock, acute respiratory distress syndrome (ARDS), and a cyst in her lung all contributed to her critical condition.

Jaycee spent three weeks on a ventilator which also meant she was sedated during that time. There were brief moments when Jaycee came to, but for weeks we watched her sleep. She was fed through a NG tube. Therapists came to move her arms and legs to help keep some muscle tone while she slept.

Things were touchy for weeks. Her blood pressure would be too low; other times it would be too high. Her oxygen saturations and amount of ventilator support was changing often.

There were many scary moments. Moments that caused me cry uncontrollably in front of other parents in  hospital hallways or in the family lounges, which is something I can normally hold inside until I'm alone in a hotel room or bathroom. The moment the doctors gave me the "we are doing our best but she may not make it" speech, offering a clergy and to call family in for us will stay with me forever.

Have I made the point that it was a bad situation?

But Jaycee miraculously recovered, and it was so amazing. We felt our prayers were answered because we did pray and pray for her to recover.

Jaycee left the hospital without any oxygen support but on a lot of medications and with extremely weakened muscles. Jaycee came home wheelchair bound unable to sit up unsupported let alone walk. My husband and a few friends built a temporary wheelchair ramp on to the house. Due to her weakness, Jaycee slept with her mattress on the floor since she couldn't get into her bed, had to have sponge baths, couldn't attend school full time for a few months, and did a couple of months of outpatient rehabilitation. The recovery was a family effort, and it did take almost 10 months for Jaycee to fully recover and get every little skill back.

Having a child nearly die changes your life and attitude as a mother. It is a wake up call as you realize that there is no guarantee for the future. As a result, I have changed. How can you go through something like that and not be changed?

Here's some things about myself that have changed since Jaycee's near miss:

  • Saturdays are more relaxing. I always felt bad about allowing Jaycee watch movies all day (her favorite activity), so I made sure Jaycee painted or played with play-doh instead. I ruined her poor Saturday by making her do kid activities that she liked but didn't love. Now, I ask her if she wants to do it. If she says no, then I don't make her do it. I let her do what she wants which usually involves hours of movies.
  • I like to make strong memories. It's not that I didn't try before but I'm more conscious of some things. If an opportunity comes up, my husband and I consider how quickly it will come up again and how enjoyable it will be for Jaycee. Like, we made sure Jaycee saw the ocean when we were on her Make-A-Wish trip. We purchased a camper last year in hopes that we can start to make new family memories too.
  • There's just some things I don't care about anymore. I don't care how many sight words Jaycee knows or how far she can count. Don't get me wrong, I totally celebrate when she learns something new in school. But I don't sweat it anymore if she can't learn something. Jaycee's health and happiness are way more of a concern of mine than her educational status. (Sorry teachers!)
  • I have to take more time out for myself. Since Jaycee's illness, twice daily airway clearance was added. Then more daily breathing treatments were added. Shoe orthotics were needed due to her muscle tone change affecting her feet. Then weekly bleach baths were necessary to combat a staph infection that will most likely never go away. The number of specialists Jaycee sees has increased by three, which means more trips to doctors. You get the idea; her care needs have always been high but the list has grown longer since that major illness. This means I really have to help myself. If I'm tired, I try to find a way to get extra rest. If Jaycee is at school, I try to carve out a few minutes of time at home with no chores for me to relax. Honestly, relaxing is hard for me when I have so many responsibilities but it's necessary for me to stay on top of everything.   

There are other things have happened as a result of her near miss. We felt strongly about getting Jaycee baptized, which happened last fall. We took in a stray cat to allow the kids to have their first pet. That cat had kittens allowing us to see Jaycee experience that too.

Each day with Jaycee feels like a gift. We feel so fortunate that God helped her pull through that illness and that she is still here being a part of our family!

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