Long Weekend

This weekend has been hectic. We saw Dr. Coran on Saturday morning and he has decided that the oxycodone that Kyara is on for storming is the culprit for her distended colon. What a catch 22. Something that helps the storming, hinders her bowels to a point that she is in pain, which contribute to storming. It is a vicious cycle. So, we have decided to start weaning her off the oxycodone. Saturday, they tried skipping every other dose. By Saturday night, I was convinced this was NOT an appropriate way to go about it. Oxycodone has a 4-6 hour window of effectiveness, and by skipping every other dose, Kyara was not getting any help for 2-4 hours. She was getting a dose every 4 hours, and by skipping every other dose, she was only getting it every 8 hours. We talked with the doctors Sunday morning and convinced them to give it every 4 hours, but to half the dose. This way she is still coming down on the drug, but not left high and dry for hours in between doses.

Tonight Kyara has been running a fever. She has been very uncomfortable and groaning most of the day, very stiff, and she looked like she was in pain or discomfort. I think the fever is due to her working all day. It must be exhausting to have your muscles constantly in contraction and to groan and strain like she does. I can't image the work her body is doing. To make sure she is not developing any infections, the doctors ordered chest xray (it was normal) and lab cultures. So the nurse came in when Kyara had finally settled down and thought that would be a great time the cath her. She said it would be very difficult to do it when Kyara was tense, so now would be best. Fine. But when she was moving her, she pulled out her PICC line. Not fine! So, xray had to come back to see if it is still in an ok position. If not, they will have to place a peripheral IV for tonight and get a new PICC line tomorrow. This is frustrating.

It was nice having Gunars here this weekend, though. We took Kassey to JCPenny to get her 1year old pictures done. Better late than never. Some of the pictures were really cute! Skylar spent the weekend with Aunt Missy, Uncle Allen, Curtis, Ansley, Zoe, and Preston. They had a sports, movies, playdate, Sunday School, filled weekend. I know she had fun! I hated not seeing Skylar this weekend, but I am happy to keep things as normal as possible for her. She scored 2 goals in her soccer game on Saturday. Yippee!! Thanks Leonard Clan for letting Skylar stay the weekend!

Gunars got back home tonight and I already miss him. We are both so thankful for the support that has been shown our family. Times here are tough, but it helps knowing that so many people have our backs. Thank you so much. Please continue to pray for Kyara's recovery. I would like to see her respond more. It would give us a new rung on the ladder of recovery to grasp onto.