My Human Pin Cushion :(

On Monday (8/15), Kayla began putting her hands to her mouth and trying to suck them. The Physical Therapist said that this is a huge improvement for little Kayla. She also agreed with us that her muscles seemed a little stronger.

On Tuesday (8/16), Kayla had another hard day. She started the day with a stomach ultrasound to check her liver for possible inflammation caused by the IV fluid they have been using to feed her. They will most likely have to stop using the fluid soon as it tends to cause liver damage with extended use. We are still waiting on the results of the ultrasound. Just after the ultrasound the doctor did a lumbar puncture (spinal tap) on Kayla to test her spinal fluid for infection. The initial results looked good but we will have to wait for a few days for the final report. Kayla also needed to have another IV put in as the one in her hand blew out again. Her little veins are so tiny that they are having a hard time keeping them in for more than a day. If she recovers from her infection soon, they will surgically put another catheter in her head so they can take out the other IV lines and hopefully stop sticking her with needles every day. They will have to wait at least 10 days from the time they started her antibiotics to make sure that the catheter doesn’t get infected like the first one. We are praying that she gets through this infection quickly.

Late yesterday afternoon, Kayla was taken down to radiology to have her feeding tube inserted into her lower bowel with an x-ray guided procedure. The procedure was successful so they began feeding Kayla milk again but only 1 ml/hour. They want to be conservative this time to give her body time to begin processing it. Her respiratory situation still hasn’t changed any so she is still intubated and being assisted by a ventilator.

Overall, Kayla has been very weak and lethargic over the last 24 hours but we aren’t surprised as she is probably exhausted from all of the procedures and testing yesterday. She is still very swollen and retaining fluid, especially in her face. We are hoping after she has had a chance to rest for a few days that we will begin to see some improvements in her overall health but especially in her muscle strength.

We are off to the hospital but will write more soon.

Love,

Lisa