About Me

Palmyra, VA, United States
Jasmine is our special miracle baby. She was born 17 weeks early and stayed in the neonatal intensive care unit for three and half months. She came home with oxygen for a short time and was free and clear for a while. She started out with the usual babbling a couple of months behind the learning curve due to her developmental delay. At 16 months, we were told she needed hearing aides for her mild to moderate hearing loss. It was then we stopped hearing anything from her. At age 2, we found out she was diagnosed with Autism Spectrum Disorder (ASD). Jasmine is non verbal autistic. In the beginning of 2010, she had been hospitalized and diagnosed with viral pneumonia. One week later, she was admitted again for bacterial pneumonia. We spent nearly a month in the hospital overall. We found out she had cysts in her left lung. In September after much debate and continuous problems, the mass and all of her lower left lung lobe had been removed surgically. It was just not any mass but a cancerous one. Jasmine has Pleuropulmonary Blastoma (PPB) -Type II.

Wednesday, November 10, 2010

Week 5: Wednesday

After I came home yesterday from work, David tells me Jasmine is not feeling like herself.  She was a little lethargic and she really wasn't eating or drinking.  She was just in for her chemo treatment and had a low blood count.  I figured she would be susceptible to nearly anything at this point.  The first thing they said to watch for was fever.  She felt a little warm but nothing to get excited about.  After a couple of hours that changed.  Her temperature rose to what our handbook guidelines refer to as a low grade fever.  I waited and checked her temperature every hour until 1 am.  From 11pm to 12 am, her temp had increased from 98.3 to 99.5.  I checked it again at 1 pm and it was 100.3.  I could hardly believe it and checked it again in the other arm.  This time it was 98.3.  What to do?  I called the CNMC after hours phone number like our plan stated.  I talk to the operator and left my message for the oncologist on duty to call me.  Thirty minutes had passed and no call. I called them back and told the operator I had not received a call.  She tried him again. This time he was trying to call me as I was on hold for him.  I spoke with him for a short while and explained what had happened. He told us to continue to monitor her temperature and if it was 100.3 then to call back and then go to our local ER.  
I felt slightly better after talking with him but said I would check her temp again as soon as I woke up for work.  I changed my clothes and into my pajamas again.  I removed our emergency overnight bags from the doorway and headed to bed again.  3 more hours and I would be getting back up for work.  I guess it wasn't a smart idea to have a cup of coffee while I waited for the physician to call me.  I just thought if I had to drive that I would be more awake.   I honestly didn't think I would get to go back to sleep.  As you can imagine, sleep was even more minimal due to my goof up. 
When I got up, I checked her temperature again.  This time her temp was 97.8.  She still felt warm but it was down from what it was.  Jasmine was up by the time I got ready to leave.  She sought me out in the bathroom and wanted me to hug her.  I finished up and set out to the kitchen to see if she wanted to drink something or eat.  I set out her usual wheat toast and go-gurt.  I put out some milk in one cup and her flavored water in the other.  She started with a bite of toast after much hesitation. She took a sip of the water and had more toast.  Something was better than nothing.  She brought the yogurt to me and I helped her with it.  We were doing better in the food department but not so good on the hydration part.  
Lunch came around and I called to see how she was doing.  She was asleep.  David said her temperature was fine and her doctor called to follow up on Jasmine's condition.  She reiterated the plan and told us to call if we had anymore problems.  By the time I got home everyone was asleep. David was napping with Jasmine who had not woken up yet.  I changed and lay down with them.  Jasmine wasn't really sleeping but she was laying there still with her eyes open.  I said hi and she proceeded to play with my hair again.  I figured at this point she wasn't going back to bed, so I turned the DVD player on.  I was hoping  she was going at least lay there and watch a movie while I rested a bit.  No such luck.  She wanted to head out into the living room to play.  Off we went to play in the living room.  I tried to push a cup of flavored water in her direction and she pushed my hand away.  I got her to smile when I joked with her.  I instantly noticed something different.  Her gums were especially white.  I got my penlight out and oral swab.  I dipped it in saline and wiped it throughout her mouth.  I used it to pry while I looked with the light. Yeah, something was going on. I thought it might be thrush but I'm not a doctor.  I asked David to get up and help me with holding her while I got a better look.  She fussed and cried. I couldn't see any better than I had before. I thought it was call worthy anyways.  So I picked up the phone and called the nurses line at CNMC.  If it was thrush we already had a script for it.  I just needed to know if it was okay to use again.  I called and got no response and so I called again.  This time I got a live person and they were going to get Jasmine's doctor on the line. Jasmine's favorite doctor got on the phone and told me to go ahead and give her the med.  It wouldn't hurt even if it wasn't but we needed to watch how much liquid she was taking in.  The fear was dehydration.  She said she would call us tomorrow, but if anything else should happen until then just call them. 
Well, for dinner she had two milks and a Go-gurt.  Something was better than nothing.  We can only hope that things will be better tonight and tomorrow.  I'm praying and thank everyone for their prayers.  We want to stay as clear as possible from any additional hospital stays, especially ER visits.  
Frankly, I'm with Jasmine.  I don't really want to eat much either. I'm just too tired and I feel like I've a cold coming on.  

1 comment:

  1. I love that you took her to the livingroom and played. God knows how tired you must be. Have you tried giving her pedialyte pops, or ever regular popsicles? Our pediatrician told us let him have as many as he wants. I give them to Matthew when we're concerned about dehydration. I'm with both of you on the ER. I hate going because you risk exposing them to something else specially with it being flu season. Rachel it's great that your doing this blog. You're a wonderful Mommy to a wonderful little girl. Keep up the GREAT work!!! You guys are always in our prayers!

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