12/20/08 - Look Who's Awake!!!
Just the other day, Aimee and I thought we would never see these beautiful eyes looking back at us again. Oh what an amazing feeling this was today to see Kayleigh open her eyes for the first time in several days. Our hearts just melted, we had a smile from ear to ear and we praised God and gave Him all the glory for healing our daughter. I almost wish every single one of you could have seen how close to death Kayleigh actually was. She was looking so rough and swollen, that we chose not to take photos because that is not how we wanted to remember her if she passed away. It was by far one of the most painful and frightening situations anyone could ever be in. We have never cried so much in our whole lives than we did that whole day.
Kayleigh still looks swollen, but not nearly as bad as she was. If you remember the photos from her open heart surgery, she was much worse than that. Kayleigh is amazing and she continues to make improvements. She is currently on 46% oxygen and completely off the paralytic. They still have it hooked up in case they need it for an emergency. If you see on her arms, she has a couple IV's and an arterial line in too. There is also a Broviac Line in her abdomen that is a straight shot to her heart for other medications or if she needs blood. These lines are delivering Kayleigh her triple mix nutrients, steroid medication, hypertension medication, hypothyroid medication, sedation medication and pain medications. She has great urinary output, so that will allow the swelling/edema to make its way out of the body. Her face is so puffy, they have to lubricate her eyes to they don't dry out, which makes it look likes she's crying. The tube in her nose is pulling off green gook from her stomach, which is "backup" from her digestive tract slowing down. It is green because of her stomach acids, yummy.
Kayleigh's x-rays continue to show signs of improvement in her lungs. Since being put in a different position, getting chest PT and a steroid, it has allowed the mess in her lungs to break up and be suctioned out. Seeing her sat in the 90's while being awake is a great sight to see. Just the other day, she was completely sedated and paralyzed, and she was still desatting at the slightest touch or noise. Speaking of noise, the yellow thing on her ear is her ear muff. We just rolled her over, so she only had it on one side. When she has both on, she looks like an air traffic controller from the airport.
They are planning on putting in a JG Tube, which will feed Kayleigh her breast milk/fortifier, but the tube will be inserted past her stomach. They have to enter outside the stomach, through the skin and right in to her intestines. The reason they are doing that is to keep Kayleigh from inhaling her reflux from micro-aspirations, which may be the reason she got pneumonia in the first place. One way or the other, she will be able to grow quicker, not have to worry about digestion problems and it reduces the risk of other infections.
The plan is to follow Kayleigh's lead. If Kayleigh responds well to weaning off the vent, then so be it. If she tolerates less medications, then they will reduce her medications. So far, she is progressing wonderfully and everyone is in complete amazement right now. We walk through the halls today with people smiling at us as they know Kayleigh is doing well. The other day, they would put on one of those "Bless you heart" faces, so we are glad to everyone else happy too. Aimee and I were nearly jumping out of our skin we were so happy today. People may have thought we were crazy or something.
Aimee and I were able to come home and spend some time with Brandon and Allyson. We told them all about the wonderful people out there and how they are helping us out financially. They both felt like they wanted to do something similar for someone else in need, so they asked if they could have one less gift so they could donate that gift money to someone who needs it (like a lot of you are doing for us). So our family as a whole, even though we are struggling, felt it would glorify God by passing on the $20-25 per gift we have gotten so far to an organization of their choice. Allyson is not sure where she wants to donate. Brandon, heart breaker as he is, said he wants to donate it to a foster child. How sweet is he?!?!?
Thank you EVERYONE for your support through this tough time. Please keep praying HARD for Kayleigh. Things are moving in the right direction and we are so blessed to have had another day with our little girl.
The Freemans :)