Wednesday, April 18, 2012

Day + 2

Every parent knows that sound. The frantic cough that sends you rushing into your child's  room knowing they are going to get sick. It's a sound that used to make me all of a sudden feel sick when I heard it coming from someone else. It was a smell that used to make my toe nails curl. Now, it's normal. I still hate it. But, I'm so much more numb to it now. My kid, other people's kids. It's odd how something like that can become white noise in a way. Last night, however, it wasn't a good white noise.

From 12:00 am until 9:00 am, every 20-40 minutes, Kayla got sick. The poor girl. It was terrible. You can imagine how tired that made us today. We have a couple things we are going to "try" to add to her nightly routine tonight to see if we can get a good nights rest with no vomit. We have a make-shift wedge that we have placed under Kayla's mattress to keep the head of the bed inclined a bit like the hospital bed. We are hoping this keeps the mucus from settling in her throat and causing her to choke it up and out. Also, the Doctor added a little Ativan for just before bed.  Fingers crossed.....

We had a very active and busy day at the hospital today. It's good to know that both of our kids are getting so comfortable with the hospital that they both "got lost" there today. They weren't lost at all in their eyes... but we had separate episodes with each where we couldn't find them. Honestly, we weren't worried because everyone here knows us and our kids. Still, it made today a bit of an adventure. Never a dull moment.

Tonight we cheered Kayla on after she chewed and swallowed down one whole noodle! It was the first thing she has eaten all day. I understand she is full-ish from the TPN, but she still needs to keep her body chewing and swallowing and processing solids. It is very important. This is part of why we only have her on TPN at night. It gets unhooked before we leave for the hospital so that by dinner she is hungry (even a little). We are trying.... 

Today, Kayla did not get sick once. She was just tired. To be expected! She is fighting through her homework assignment. A story about a Sloth.  We are doing multiple loads of laundry and getting through another night. Celebrating the fact that we are 1/2 way to home! Praying this is her cure. 120 children were scheduled to come through A/T today. 120 kids that should be at home. My heart aches for the families who learned today that they will begin this fight or continue the fight because of a relapse.

BEST GOD-MOMMY EVER. Donna filled a syringe up with lemon juice. Kayla hates taking her Gabapentin (for her jaw pain) soooo much. She cries hysterically painful tears every time she hears, "It's time". (this is 3 times a day) So, Donna decided that if they take something nasty at the same time, it might help. It did!   HAHAHA!!!! Donna, you ROCK.


  1. I'm so happy that Donna is there with you. What an amazing team you all are. Kayla is in my heart and prayers, every day. I hope that I will have a chance to see you all and contribute to the healing process when the time is right. Thinking of you and your birthdays around the corner. I know that the best present would be Kayla's restored health -- this is what I wish for with all my heart. XO Lauray

  2. I am reading every but not writing, but had to chime in to 1/2 way home, 1/2 way to Curing Kayla Rose HOORAY. UGH how awful, I'm sorry to hear she's having a hard time round 2 w/ the vomiting, but as always her every so intelligent and creative parents & Donna (thank you) have found swift remedies to make her as comfortable and positive as possible. Much love to you and yours, be well today K. Kolleen