Things are moving in the wrong direction today. Early this afternoon, Kayleigh started acting up and showing more signs of irritability than normal. Since being put back on the vent, her oxygen has been set around 40% and it hasn't gotten any better. When we came in late this afternoon, things got worse and she was placed on 100% oxygen. Her sats were hanging in the low 80's for a short time and quickly started dropping. I have never seen her not do well on the vent, so when you see her sats dropping in to the 60's on 100% oxygen for 30-45 minutes straight, you think there is no place else to go and things are going to get ugly before you know it.
They performed a CBC (Complete Blood Count) and found out that Kayleigh has more than normal immature white blood cells, which shows signs of an infection. So now Aimee and I are freaking out. We had a surgery that we could have done without and she might be getting an infection from it. They started antibiotics and are also going to give her another blood transfusion as her hemoglobin was less than normal. Since the vent was at its highest settings and she was not oxygenating her blood well enough, they brought in a machine that hooks up to the vent that delivers nitric oxide through her system. The endothelium (inner lining) of blood vessels use nitric oxide to signal the surrounding smooth muscle to relax, thus resulting in vasodilation and increasing blood flow. (I stole that from Wikipedia) Wikipedia said it exactly right. It started to work because her sats (which were constant at 60%) started to rise and level out around 92%.
That makes us feel much better, but we are still not out of the woods. They have been administering the lasiks (diuretic) to help remove the water off her lungs. She also lost 100 grams since last night which is not normal at all. Being that she had a lot of blood drawn and the lasiks made her pee a lot, they are contributing those factors to the weight loss. Our biggest concern may be that her VSD (hole in the heart's lower chambers) is the problem, possibly causing her heart to overwork/go in to failure and she is not big enough to do the surgery to close it.
If the blood transfusion, nitric oxide, antibiotics don't do the trick, they will be ordering an echocardiogram to look at her heart tomorrow.
Please keep Kayleigh in your prayers and hope that she can pull through this like she has with every battle before.
Thank you so much!
The Freemans :)