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.|