It's been a long time since I've posted, but it feels even longer. I feel like I've lived a thousand days and nights in the past few weeks.
Things started good. Cary Lynn was eating, gaining some weight, and we were making some really good strides with her. Her tone was improving and at her last PT appointment they said that she had her best day yet. She got a prescription for glasses to help with her nearsightedness and a good bill of health from our pediatrician.
Then she threw up her evening feed. No biggie. She was probably backed up. We gave he some extra meds and tucked her in. But the next day she wasn't right. She looked and acted off. We had an appointment for AFO fittings but I cancelled that and took her into the Pediatric Er.
We did an emergency CAT scan for shunt failure. And we started an IV to rehydrate her. They ran a battery of tests and they decided to keep her for a "day or so". So they put us on the regular pediatric floor. She was pretty happy and I figured like most of her GI bugs, she would be OK in about 48 hours or so.
But this virus had other ideas.
Then Shannon and I got sick. I was banished from the hospital. I talked to my doctor and found out the the noro and roto viruses were going around. So I stayed home and made lots of calls. I started to rally and went back to the hospital.
We had a great Dr. this time. He told me that she would come home a very sick little girl that needed more intensive care. So he was constantly after me to take care of myself. But it was so hard. It was hard when everything that you love best in the world is stuck in a hospital bed.
The Dr.s say it is not the CP that shortens your life. It is the "other things". Complications. So every hospital visit I ask or think is this the time that the "other things" will claim her? Will she stay with us awhile longer or do I need to think about good-bye? I know it sounds morbid but when you live with a medically fragile child you walk a different path. It can be a lonely path but it also changes you into a stronger person.
This time though, Cary Lynn decided that she likes it here. With us:). Our Dr. placed an NG tube in her. An NG tube is a tube that goes from your nose down your throat into your stomach. Thanks to that tube Cary Lynn was able to eat again.
So she came home. She came home weak, exhausted, and afraid. Every touch at the hospital involved poking or temperature taking. Plus every time she cried for more than two seconds they did blood work and thought that the world was coming to an end. I kid you not. The first time they called a team in and the lead doctor diagnosed her with a poopy diaper. The second time they called a team in and the doctor told them her feet were cold and to put some socks on her. Yup. I guess sometimes when you get all those degrees and all that extra schooling your common sense has no room to live upstairs with the rest of all that medical information.
So she is still pretty skittish. She is afraid to be touched and moved around too much. I am slowly and gently and very patiently working with her. She also needs to be fed pretty much around the clock. So she has the NG tube for now, but we will be getting a G tube for her soon. We have tried so hard to do it all orally, but her poor little body just won't work the right way. So she needs support. And we are going to give her all she needs.
So we are just taking it one day at a time. One hour, sometimes even one minute. I have taken out my anxiety on something I CAN fix. My house. I have bleached, lysoled, re-bleached, and 409'd the tar out of everything. I tried to convince Shannon that bleach baths were all the rage, but no go on that. We are starting to feel better. On the outside we are healing. On the inside I am still a little rough. It will take time. Time and love. Both of which we have.
Sometimes you dwell in the valley of the shadow and sometimes you get to walk in the meadow with bright sunshine. I have been in the valley and thanks to love, prayers, support, and doctors who think poopy diapers are a crisis I am slowly making my way back to meadows. With a little time and love I will get there.