Tuesday, November 26, 2013

Finding Thanks

I'm once again sitting in a cramped, sterile room with my daughter laying in a hospital bed. A virus has once again attacked her lungs causing her to need oxygen and medical treatment. We had been home less than 4 weeks from her last hospital admission. This is the sixth month in a row that we have been in the hospital with her. It has been tiring, frustrating, worrisome, stressful, and at times unbelievable.

It's had an effect on everyone in the family. Poor Jaycee has endured pricks, tests, x-rays, medicines, being woken up for treatments, and discomfort. She has not been able to go outside when it's too hot and humid or if people are burning leaves. She hasn't been able to go places and do things she has desired to do. And school? I hope there's nothing important to learn in first grade because she's hardly ever there. For me, I've been ran ragged trying to play mom, wife, and speech-language pathologist (my usual roles) but also the nurse and doctor at home. Keeping track of her appointments and medicine schedules have been mentally and physically exhausting. I can't work when I need to at times. I battle selfish thoughts of wanting her to get better so my life will be easier. My 4 year old son's life has been affected as well. He's been passed around to a couple of different homes when we are in the hospital two hours away from home. When we are reunited at home, he's clingy and has to be reassured that he'll see me later that day after he goes to school. It's sad that a four year old knows how to turn on a vest therapy machine and makes comments like, "Sissy's not feeling well." He has a fake cough that he produces until I comment on it so he can ask for medicine. Does he really feel the best way to get attention from me is to pretend to be sick? Not good! And my husband...He is torn between being with his sick daughter and going to work to make money for the family. He comes home tired and has to deal with a stressed out wife and a daughter who is rarely completely well.

Still, through all the changes, disruptions, and illnesses, I can honestly say that I have much to be thankful for this Thanksgiving. I'm thankful for my husband. I couldn't do this alone. I'm thankful for the good natured and sweet spirited son I have. I'm so thankful that Jaycee is alive and here with us. I'm thankful for the many, many people who have poured out meals, money, and gifts to support our family over the past few months. I'm thankful for a God who gives me strength and faith to keep going and mercy when I have doubts.

So it doesn't matter if we get discharged and spend Thanksgiving at home or if we will be celebrating it in the hospital. I can find thanks in any location as long as my family is with me in the room.
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Wednesday, November 20, 2013

Coming Full Circle with a Song

One of these days, maybe I'll quit blogging about the hospital and Jaycee being sick. But, not today... A few weeks ago, Jaycee was in a medically induced coma to recover from septic shock and acute respiratory distress syndrome. During this time, we played familiar things to comfort Jaycee. She still had her hearing but she was sedated and paralyzed by medicine. So, we played familiar television shows (Peppa Pig, The Wonder Pets, Barney) that she always enjoyed. I also downloaded 13 worship songs to give her an hour's worth of songs to listen to.

We listened to the songs over and over during those weeks in the hospital. Once we got home, I found it hard to listen to those songs. Maybe it sounds silly, but those songs would take me back to the hospital with the chaos and emotional roller coaster. They triggered things I didn't want to think about and remember. I knew it was something I had to get over, as some of these songs were songs I really loved. But, I didn't want to listen to them, think about Jaycee on a ventilator, and cry.

One of the songs was Nothing Holding Me Back by Bryan & Katie Torwalt. You can listen to the song here. A couple of weeks ago in church, the worship team sang this song. My first thought was, "Oh no...the hospital song!" I looked at Jaycee & she recognized it too! I wiped an occasional tear streaming down my face as I tried to sing the words chalked full of emotion for me. As I was singing the song, I was torn in this love/hate relationship with it. I loved the words and the melody but I hate that it had become associated with our time in ICU. Near the end of the song, the words "Jesus, you make all things new," hit me.

In the hospital, I sang and listened to this song and spoke that part in prayer and faith. Pleading with God to help bring life back to Jaycee's failing body.

But now, the words in that song are fulfilled. Jesus did make Jaycee new. She is living, walking, and breathing on her own. The song was a prayer in the hospital. But now, the song is a praise and a testimony.

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Thursday, November 14, 2013

Signs of Post Hospital Fatigue

Being in the hospital is exhausting for the patient and the caregivers. But, the exhaustion doesn't let up when you get home. For me, I've been keeping track of medicine, vest therapy treatments, physical therapy appointments, occupational therapy appointments, school work, my own work, the house work, etc. So, here are my signs for caregivers that you are still physically and mentally tired. (Yes, I have all the signs).

-While driving to your intended destination, you suddenly realize you are driving the absolute wrong way.

-It takes three tries for you to push the buttons in the right sequence in order to turn the oven on.

-You convince yourself that a soda at 10 am is ok and then you push it to 9 am, and then to 8 am. Pretty soon, you wake up drinking soda for a caffeine rush.

-You look at your calendar 4-5 times a day to see what you are doing and when.

-You frequently say, "What was I saying" during conversations.

-It takes 2 tries to get your child to school because you forgot his backpack.

-You feel like you could sleep sitting up anywhere you are at 2 o'clock everyday.

-You don't care if you wear sweatpants out in public. (But your spouse does!!)

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Wednesday, November 6, 2013

Faith: In sickness and in health

Not again! I hear my daughter cough and sneeze out thick snot. Sunday marked 2 weeks of being home from the hospital, and it appeared that she was getting sick again.

I have to admit, I could feel the anxiety raising up inside of me. I start my checks on her. The stethoscope comes out. Courseness in lungs. (Grimace) The oxygen saturation monitor shows typical levels with no change. She doesn't feel warm. It just seems like she has cold symptoms.

Before you shake your head at me for being a paranoid person, just know that my daughter was hospitalized in June, July, and August for her asthma or pneumonia. In Sept/Oct, she spent 4 weeks in the hospital and was on a ventilator. So, yes, I am on high alert with any change in her health right now.

My husband tries to calm me down, and we decide to head out to church anyway. Due to Jaycee's illnesses, we hadn't been to church in several weeks. I was missing the atmosphere of attending our church.

So off we went. The music was great. The sermon was...well jam packed with things I needed to hear: When you pray and believe God for something based upon the Bible, that seed is very small. You have to guard that seed. There are many outside influences that try to steal it away but you can't let external things affect your internal faith. Your faith, and perseverance to maintain it, has to come internally.

In other words, whenever I got up that morning and saw Jaycee's snot, I should have said/prayed, "Jaycee you are healthy and well. Your lungs are strong." I could have did some checks on her but not allowed anxiety to run the show. I could have told God thank you when a level looked normal. I could have prayed when I heard stuff in her lungs. But, I didn't. I think I did exclaim, "Oh Jesus!" but that's as far as it went.

It's so easy to get wore out when you are in battle after battle. It's easy to speak and think negatively when you are in bad situations.

But faith is the evidence of things unseen. Faith and the word are true no matter what our eyes and other senses tell us. Having faith that Jaycee is healthy and well when she's having no symptoms is easy. But when the first symptom shows its ugly self, the test of my faith is in my reaction. Do I really believe that she can keep from going to the hospital? Do I believe God can sustain her through another illness or that God can take away this illness? Do I see her as fragile or do I see her as an overcomer through Jesus? Can I remain calm when I see a symptom and not get too emotional and out of control?

Sunday morning, I didn't pass the test. But, I hope to have more successes and less failures in the future.

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