Ashley's Story

She will leave fingerprints all over your heart


Enough for Today

It's only 2pm and I've had enough for today. I have cried, I have vented, I have fallen apart, I have been angry, I have yelled, I have whatever you can think of, I've done it.

This day has proven to be just as confusing as all of the others. No one knows what to do. Everybody is guessing, making changes, and failing to give any explanation for those changes. It makes me crazy. Every few hours minds change and so does the plan. I am more than frustrated.

I can't even tell you what we are currently treating. All I know is that we are slamming drugs, very strong, dangerous, drugs into her body to treat this and that and this and that. Each of them has an effect on something else and therefore they counteract that effect with yet another drug. For a family who doesn't even swallow a Tylenol I can't express to you how difficult the path we are being led down is for us. Although, I know God knew it would be difficult. We know that we have no choice, but it is more than trying to sit back and watch as each syringe infused into her body causes more and more things to go wrong in an attempt to fix our initial reason for being here in the first place.

I don't know if you have ever lived in a hospital room for more than a few days or not, but if you have then I know you will understand where I am coming from. If you haven't and you truly do not know then I ask you not to give me advice about it. I just need to vent a little and this is my forum to do it. I would advise that if you ever have a choice between being admitted to a teaching hospital and a non teaching hospital then I would choose the latter. In our experience here is the difference. Rounds. Pure and simple. In a teaching hospital, rounds are NOT for the benefit of the patient and the family. They are not to inform you about the plan for your child. They are not to discuss any care with you. They are for the benefit of the students. Plain and simple. You have no right to ask questions or feel a part of or even be included in the decisions made for your child. We have been in several hospitals over the last 3 years. 7 to be exact. We have never felt more on the outside of the circle than we feel here. If I have a complaint about our transplant hospital it is this. Our surgeons do not spend much time communicating with us. If we are lucky we may see them for about 90 seconds a day. They spend more time talking out in the hall with the students following them around than they do the parents.

I would like to inform the transplant "world" that making rounds in a hospital SHOULD be about seeing the patient, communicating with the family(especially the parents of small children), and giving us an opportunity to ask questions of those in "charge" of our childs care. It should NOT be about training the students!!! I don't really care what kind of grade they make on their pharmacy exam. I care about knowing the reasons behind your choices of this drug or that.

As always my biggest struggle while in Omaha is feeling like we have no rights to care for or be a part of the care given to our child. This feeling does not come from our nursing staff. They are AWESOME! Truly, they are. I have only come across 2 nurses in 2 years of care here that I will not allow to touch my baby because I have witnessed them make dangerous mistakes while assigned to us. The doctors are the ones who convey this feeling to us and today it was evident that they are the "Boss" of this place and we are merely the ones who need to be "bossed" around. May I inform them that I am not an idiot. I am fairly intelligent and although I do not have the training they do I do know Ashley's history much better than they do and I will remind them of past mistakes and what we should be leery about repeating. That is my job.

Its been a hard, hard morning. Being treated (and it wasn't just me, it was our nurses as well) as though we are inferior people not worthy of being spoken to is unacceptable to me.

I called Dave in tears and asked him, "What are we going to do? I can't live her for "months and months" and be treated like this again." His answer? "We'll take it one day at a time and maybe tomorrow will be the day that she starts to get better."

Ok, I feel a little less burdened now that I have spewed all over this post and I will attempt to share what is going on with Ash. She is better today. I gave her a bath and dressed her for the first time since Monday. She is receiving more blood at this time. A four hour infusion. She is sitting up next to me on the rug and we are signing together. She is very weak, but to see her sitting up again does my heart good. Her tummy is now working. She has begun to pee off some of the extra fluid because she is receiving lasix every 12 hours. They are raising her Prograf levels again to treat the rejection and they have doubled her treatment protocol for the CMV back to two infusions daily. This is what is changing from day to day and come Saturday when a new surgeon is on service it will change again so just hang on. They diagnosed her with a hernia in the fascia around her stoma sight and apparently with each scope a loop of the bowel is slipping in there and being "strangled" causing the stalling and blockage in her gut. It takes about 48 hours for her to turn back around and this is a cause for great concern. If the bowel is strangled to the extent it loses blood supply then it could necros(or die) and we would lose it. Surgery is the only way to fix this hernia, but it is not an option at this time so we will just wait and watch. Take down is the ultimate solution, but again not at this time.

I am looking forward to this week ending. It has definitely been one of our hardest to date(this admission). I apologize for venting, for rambling, and for spewing, but if I don't do it here then its going to spill out all over someone here. I can't allow that to happen. Hopefully now I will be able to move and remember that tomorrow is a new day and perhaps "his" mood will be a little better. I can at least pray that it is.

Hope your day has been a little more pleasant that ours. We'll talk soon. Trish


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