Love and Comfort

Kaitlyn spent yesterday afternoon and this morning surrounded with love.  She had visits from Granddad and Grandot (Deanna’s dad and stepmom) and Memere and Pepere (Chip’s mom and Dad) and Gigi (Deanna’s mom) and little brother Cole.  She’s been letting people hold her and just love on her.  She even got some pretty Balloons from her friends the Kaspars which she checked out while I held her in my arms.

With Daddy checking out her balloons

We were able to get her the patch for pain that went on her shoulder and releases pain meds continually over three days.  The morphine works, but since it peaks at one hour and we do it every four, this just seems like the best solution to ensure she always has something in her system to keep her comfortable.  Her diapers have also had a reddish pink color in with her urine and hospice confirmed that this is likely bilirubin and a sign that her systems are continuing to shut down.  

Reading some bible stories with Mommy

She had a more restful night, but I think it’s likely because she doesn’t have much strength to fuss and cry.  

Getting some Gigi love

Her little body has had little to no food or water for over three days.  The food and liquids were not being processed and the liquid was absorbing into her system and causing swelling and fluid in her lungs.  When we tried to feed her after the second day, her body wretched and she tried vomiting so we had to stop.  We also noticed the backup of bile, a dark brownish yellow color fluid, in her belly.  We have been checking her G-tube to remove any backed up bile before giving her medicines.  Yesterday afternoon we stopped seeing bile so we decided to try and give her an ounce of water.  She did ok with it and we haven’t seen any more bile so far.   We have continued to give her an ounce every few hours or so.  We decided this morning to try Pedialyte and see how it goes.  They say a person doesn’t want food during the natural process of passing but it’s so hard not to feed your child and we just want to make sure we are doing whatever she can tolerate.  If her body gives us signs that it is not what she needs then we will listen, but we want to do all we can to help her if possible. 

Mommy and Kaitlyn both rest better when holding each other's hand

We are thankful for the outpouring of love and prayers.  It is so great to know Kaitlyn has touched so many lives.  Please continue praying and lifting her up.  We do not know how long she will continue to fight, but I know your prayers help her and us continue to be strong.