Kayla is Showing Signs of Muscle Improvement

It has been a weekend full of ups and downs for sweet little Kayla.

On Saturday (8/13), Kayla’s lungs finally cleared up and were fully expanded. We were so excited by this news! Her feeding tube was still not in the right place to begin her feedings but we hope, in the next few days, it will work its way into place.

On Sunday (8/14), Kayla’s lungs had continued to improve so the doctor took her off of the jet ventilator and put her back on her old ventilator. What a relief! Unfortunately, not long after the ventilator was removed, they discovered that the catheter that they had put into her head during surgery on Wednesday had gotten severely infected and had to be removed immediately. It was replaced by two IV’s in her hand and foot. I sat with her through the procedures and was horrified as they attempted to find a vein to use. After 6 attempts to put the IV’s in, I had to leave the room. Poor Kayla is becoming a human pin cushion. Right after her IV’s were in place, the doctor said she would also need to do another spinal tap in a few days to see if the infection had gotten into her spinal fluid. Ugh! They also received some lab results yesterday which showed that Kayla had a super low red blood cell count that required her to have a blood transfusion immediately. They gave her 50 ccs of blood starting last night. It just doesn’t seem fair to have to go through so much at such a young age. I wish there was something that I could do to protect her from all of this pain but I know that my hands are tied. All I can do is be there to hold her hand and let her know I’m there. I have never felt more helpless in my life!

On a positive note, Kayla seemed to show signs of improvement in her muscle weakness yesterday. When I was holding her hand during the IV procedures, she was squeezing my finger really hard. She was also pulling her arm back down when I lifted it up. This is more reaction then I’ve seen from her since she was born. I am eager to get to the hospital this morning to speak with her primary care doctor about this change. I wonder if some of her muscle issues have been due to the infection that she is recovering from. Hopefully, we will continue to see improvement in this area as this is the doctor’s biggest concern still for Kayla’s long term prognosis.

One last thing, last night when Jeff arrived at the hospital, Kayla opened her right eye for him. She had done that for me early in the week as well. It was a very tender moment for Jeff. There is something about seeing her eyes that made us both feel more hopeful that she will recover soon. So far, these are the only two times that she has opened her eyes according to the nurses.

Thank you again for all of your messages. Jeff and I have been so touched by each of them. We sit down each night to read them over and over again. They really help to keep us going on difficult days and help us to maintain a strong sense of hope for Kayla’s quick recovery.

Love,

Lisa, Jeff & Kayla