First of all, stop for a second and just look at all that mess in the second photo! If you could only hear how bad it looks. There are alarms and chimes just going off as Kayleigh dropped her sats more and more today. They have no idea why, other than the fact that she is irritated with the vent being down her throat, her never ending pricks for blood gas tests today, her swollen cath leg issues, her huge PVC line sutured in her other leg, a infected suture coming out of her gastrointestial surgery scar, a hernia they found in her pelvic area that will be needing attention later, no 50ml bottle feeds anymore, dry tongue, eye boogers galore, non stop wet diapers from IV fluids, no snuggling allowed from Mom or Dad, no peace and quiet from all the dinging machines, and the constant sedatives which scares anyone who wakes up not knowing what the hell just hit them. What do you think? Almost every single time, the nurse would have to bag (manually oxygenate) her to bring her back up. For most of you who have never been in the NICU, this is the true meaning of stress.
On a good note, other than her sats dropping over and over, Kayleigh is recovering from her cath episode pretty well. Her blood pressure issue has dropped to a normal level, her nitric oxide is down to 2ppm, and her cath leg is starting to look a normal shade of pink. The heart surgeon came in today and was very impressed with her stats as a whole. He understood her sats dropping, as he said it is normal when she freaks out, the hole in her heart is shunting blood to the wrong side, causing non-oxygenated blood to be pushed out to the body. Once that is fixed and she is irritated by the smallest things, that won't be happening anymore.
Tomorrow they have a CT scan to make sure her head checks out with no major problems. Being that her blood pressure came down, they don't think they will find anything wrong, but they want to be positive before she goes in to surgery. Now we are not 100% sure, but the surgeon hinted that if she continues to check everything off her list this week, she may go in to surgery sooner. We are not positive, but we will be sure to let you know if that happens. We know they are really worried about this window of opportunity. If we wait too long, her lung pressure might never come down after closing the hole and she would die of heart failure. That is NOT going to happen though! So if she is good to go to surgery, then let's get this show on the road.
As the days go by, we are more and more confident about the open heart surgery. Aimee and I don't know what it is, but we have a gut feeling (which has always been right) that she is going to kick butt through this, shock everyone once again and be on her quick route home. Although, they are expecting us to be in the CVICU for two weeks, NICU for a few weeks and NPCU for a few weeks. That is the goal and we are NOT going to have any more set backs after this! GOT IT?? If you've read Kayleigh's entire story, you will understand where I am coming from on this. There has just been one too many set backs. I can't believe just last week, we were one foot out the door and now we have the biggest test of all.
Aimee and I are just blown away from all the responses we are getting on FaceBook and people creating prayer lists. All I can say is THANK YOU! It touches me deeply that we are all in this together. Kayleigh is a fighter and she is going show everyone how strong she really is. I know deep down in my heart, that with prayer, anything can be done. Please keep praying hard and joining together for Kayleigh. We can't wait for the day that we can show her all the wonderful people who loved her so much. She is so blessed to have every single one of you in her life fighting with her ever step of the way.
Whether surgery comes later this week or in to next week, my biggest prayer request continues to be that Kayleigh will recover 100% (and then some) from this previous battle before she goes in to her open heart surgery.
Thank you all so very much for your support!
The Freemans :)
The Freemans :)