There are days when I definitely feel as though my entire life is one big "balancing act". Today is one of those days! We are trying to find a balance between showing enough Christmas spirit and joy for the older kids and the concern that they can obviously see in our eyes as we come in and out of Ashley's room. How are we supposed to pull this one off? I have no idea. I am a mess on the inside and my mind races with concerns and fears for my sweet Ashley. At the same time, I put a smile on my face when Blake and Allie approach and fake an excitement about the holiday that is to arrive regardless of the situation I find us in. In no way do I want them to miss out on all that Christmas day has to offer. We have basically explained to them that Ashley has started a new medication today and that in order for it to work we must stay out of her room, keep things very dark and very quiet, and not touch her. I sit in silence and watch the monintors for hours. The numbers are red. The numbers are flashing. The numbers are too high. The numbers alarm.
At this time we have maxed out the dose of blood pressure medicine that should be allowed for a 24 hour period. The medicine they used yesterday is not an option because it shot her heart rate over 200. The medicine they would like to try is not really an option because it is a "beta blocker" and today her heart rate is too low to risk it dropping in response. They assure me there are several more things we can try. The only problem is that with every option there are side effects and risks and we have no way of knowing how Ashley's body will respond to them. We think that the introduction of a new steroid that was used to wean Ashley off of the dopemine 2 days ago is the reason for her increase in pressure. The only problem is that her body desperately needs this steroid to try and enhance an attack on what has caused her to become so ill. The steroid can not be stopped. It must be weaned back slowly. While we wait for this weaning her blood pressures continue to rise. The doctors are trying to "balance" the risks of each drug with the possible benefit. Everyone has a theory about the cause of Ashley's repeated illness'. They have now determined that her adrenal system is "shot" because of the high doses of anti-rejection medicine that she is on to keep her from rejecting her transplanted organs. Because of the lack of adrenal response she needs to be on a dose of this hydrocortisone steroid, but it is causing her dangerous increase in blood pressures. What do you do? I don't know and I am afraid that nobody really does know. The good news is that they are still planning on removing the breathing tube and allowing Ashley to wake up in the morning. This is the joy we are finding in our situation today. She is strong enough to breathe on her own now, and for this we are more than thankful.
Trying to balance the newly gained medical knowledge( that I wish I had never needed to learn) with my faith in God and His ability to change her situation is another area that I am struggling with. Honestly Dave is much, much better at this than I am. When you look over at him you might see one or two tears fall down his cheeks. When you look at me you see the tears falling freely and uncontrollably. He is concerned, but he successfully gives it to the Lord and doesn't continue worrying about it. I am concerned to the point that my prayers are a garbled mess of pleas and requests that make no sense, and I am constantly picking it up again and again and again. Dave is a source of strength, and I am exhausted because of my weakness.
On a personal note I would like to say Happy Birthday to this amazing man I am blessed to call my husband. Thank you for you strength, your integrity, your love for God, your silly humor, your leadership, and your friendship. Thank you for giving me Blake and Allison, and thank you for choosing our Ashley. We are all blessed to have you in our lives, and I admire who you are. I love you, and I hope that despite the trials we find ourselves facing today with your sweet baby girl that you have a very happy birthday. God has blessed us, and I wouldn't want to travel this path with anyone else. Trish