What do you do when there are no more options? What do you do when time is running out? What do you do when your daughter is dying and there is nothing you can do to help her? There is no research, there are no studies, and there is no other proven medication. The only thing left is God.
Right now, Kayleigh is completely 100% in the hands of God and 5% of that is in the "trial" medicine that the doctors feel will be a last chance option to help her pulmonary hypertension. "The last tool in the toolbox", which is what one of our doctors said tonight. It is a medication that does the same thing that oxygen, nitric oxide, Viagra and prosticyclin does, but those things haven't proven to fix things either. All these options/medications are supposed to open up the air sacs in the lungs, somewhat like an asthma attack, but your dealing with pressures from the heart and lungs and whether or not the body is going to get its oxygenated blood to survive.
One big problem with this new medication is that it takes a month before it proves to work at all and I don't think we have a month to spare because of Kayleigh's troublesome prognosis starting last night. Right now, the four medications are keeping Kayleigh alive as her sats will drop quickly when any of them are taken away. There is no telling if this medication will help, but it is a last ditch effort. The doctors don't feel confident about it since the other four "top choices" haven't fixed her hypertension.
Besides the medication, the doctors are fearing that Kayleigh's pressures are becoming "fixed" (stuck) or already fixed. When the pressures become fixed, they rise but don't fall. So after that urinary tract infection, her pressures rose to 68, but have not dropped below that mark in over 2 weeks. That only means, she has to outgrow this before her chances become better, which is a really long shot. We were hoping and praying that her pressures would stay reactive long enough to come down before we feared they would become fixed at such a high level, but unfortunately they didn't and her levels right now are too high for her little body.
One of three things are going to happen. 1) This last chance medication is going to miraculously work. 2) She will have one final desat that she won't be able to come out of. 3) Her heart will become overwhelmed by the pressure it's not supposed to handle and give up.
As I said above, this last chance medication takes up to a month to prove if it is working and I don't think we have a month according to Kayleigh's current prognosis. Last night, Kayleigh started to desat without agitation. She would turn a shade of purple and drop her oxygen saturation in to the 70's - 80s, but take a long time to pull herself out of it. The odd thing is, which she hasn't done before, is she is awake and not showing any signs of irritability. The doctor explained it as the pressures could be getting bad enough to where she doesn't have to be irritated anymore for her saturation levels to drop. She is currently on 100% oxygen at 6 liters of flow, which is the max. She may be placed on the vent, but since she is maxed out on every other medication, it won't help. My fear is the first hypertensive episode that she has or when she does get irritated, she may not be able to pull out of it.
All we can do is put it is God's hands and trust that He knows what He is doing. This has truly been one of the hardest days in our lives through this journey, not to mention that today is my "not so happy" birthday. Aimee and I know that Kayleigh has beaten the odds many many times before and we are doing our best to stay as positive as possible. I feel in my gut that we are all going to need a lot more prayers for Kayleigh to make it through this hurdle, so all we can ask is that everyone pray harder than you ever have before.
If God decides it is time for Kayleigh to come home, then please pray that your life can find hope through her story.
God Bless and please help pray,
The Freemans :)