9/2/08 - What is going on?
Well, after a very stressful day yesterday, today was looking much better, but only from the outside in. Sure Kayleigh is going to be feeling much better after being given a time release sedative, but the truth is no one knows why she is has been so irritated. All day today, she would wake up and clench her fists, turn red and whine all while breathing very fast as if she was hyperventilating. She would desat when she was awake and she would have apnea when she slept. The doctor came in to speak with us today and said that there could be many reasons why she is not happy or in pain. 1: The eye surgery and exam, 2: Stress from the Lower GI test, 3: Medicine to dialate her pupils, 4: No food, 5: Bloated stomach/trapped gas. No one can lay a finger on it and Kayleigh certainly can't tell us. So the doctors are going to keep an eye on her and see what is driving her crazy.
The doctor is also concerned about her lack of growth and wants to make sure it is nothing genetic. To be honest, I don't think anything is wrong genetically because it's probably the lack of food she has been given that is keeping her from growing. From the amniocentesis at the beginning of Aimee's pregnancy, Kayleigh was in the clear from any genetic disorders, but our doctor wants a physician to come in to check her out again.
Kayleigh's blood gases came back good today. She did get some blood because her hemoglobin was low and she started her feeds back late this afternoon. She is getting the good stuff (Neocate), which is like $60 a can, ouch! Hopefully this will work for Kayleigh because I seriously don't know what else will. Aimee and I are still on edge, but hopefully things will start to turn around soon. She did weigh in last night at an unbelievable increase from the night before. She weighed in at 1158 which is almost 2 pounds 9 ounces. We will check in later tonight to see if that was an error or true 98 gram weight gain. Hopefully it was accurate, so we can get closer to this 2000 gram mark.
So what is going on? I have no idea and it doesn't seem like anyone else does either. The main struggle through this is not that Kayleigh might have a serious problem or not, but just not knowing what that problem is. No one wants to see their child in pain and not knowing what that reason is that is causing them pain. That has got to be worse than Chinese water torture. All we are doing right now is driving ourselves insane by asking, "Could it be this" or "Could it be that." Right now, trusting in God is all we can do and hope that what ever it is, it shows its face quickly so they can fix it.
Please pray that whatever this issue is, it is resolved quickly and Kayleigh can rest peaceful again without pain medicine. I just don't want there to be any more struggles and to journey the rest of the way on an easy down hill slope right out the door. I know it is not the end result, but the journey that matters. But come on, how much more are we suppose to learn from this? (Sorry I am trying to be funny without flipping out)
Thank you all for your support through these tough times. I could use a hug from you all, but Aimee would really think I lost it if she caught be embracing my computer.
The Freemans :)