Smart Water

I had a discussion with Parker today about the things that are making him feel anxious. Imagine, waking up after two months flat on your back ~ you can't sit up, you can't breath on your own, you have all kinds of drugs dripping into your body keeping you alive, your stomach cut is open under the sheet, covered only by a sponge and cellophane and held together by a piece of plastic sewn inside. You can't get up to go to the bathroom, or even stretch your legs.

Your bed rocks back and forth at will to keep you off your spine (bed sores) and it makes you sea sick, your hands are tied, you haven't had food in almost 2 months, you are so thirsty nothing quenches it and half the time someone else tells you that you can't have water anyway. You can't hold a pen, reading makes your eyes go all jiggly, tv bothers you because it is too loud, your only window is the size of a bathroom mirror and on the other side of it is a brick wall, eliminating the possibility of sunlight. It's enough to make me crumple at just the thought.

Parker is afraid of death, he said. And that they will continue to find more and more things wrong with his body that there is nothing he can do about. I completely understand, but the pain in which he told me these things made me realize he needs someone other than his Mom to talk to.

I have asked Kevin, the Chaplain, to come speak to him. He doesn't wear Chaplain clothes and Parker likes him. Kevin is very gentle, but will tell the truth to the best of his ability. He is compassionate and sympathetic and gentle. I think it will help Parker to process all of this, which in turn will help him to move forward with his recovery.

In talking about this today with Greg (his nurse) and Francis (the Critical Care Unit Manager) I realized that my own progress in dealing with this is blocked by the fact that I still cannot allow myself to think about those two days: April 14th and April 22nd, the two days they told me I was losing him. Just writing it brings me to tears and I shut down.

I know that, in order for me to help Parker get well, I have to be mentally well. I have to deal with those days. I have to do what I always told my kids to do, I have to face those fears head on and begin the process of getting past them. I can't stand the thought. I imagine laying on a floor of some shrink's office, curled up in a ball in the dark, unable to move. Unable to breathe. But I have to do it.

Whenever I walk home at night I allow myself the luxury of releasing the tears that have been building all day. There is a group of homeless people who live in the park across the street. The other day I was walking past, sobbing my eyes out, and I saw them gathered under a tree near the road. One of them said, I really wish someone would help that poor lady .... I'm really tired of hearing her cry!

There was something humorous hidden in that statement and I had to wonder, are the homeless the sane ones and the rest of us crazy?

P.S. The Smart Water picture is because Smart Water makes me smile. A story for another day involving my niece, McKensie and I. Smiles are good for the soul. So there you have it. :-)

Slaying Dragons

This is a photo of one of Parker's old football coaches, Scott Murphy, who is now the principal at the middle school Parker attended in MD. Coach/Principal Murphy was being taped to the wall by the students he had challenged to raise money for charity. He said once he was attached to the wall and they pulled the chair away it was scarier than he expected. But it goes to show, you do things for your kids. Whether you are their parent, their coach, their principal.... we do things for our kids.

I'm almost afraid to write this because I am afraid I might jinx it. Today the Critical Care Unit manager, Francis, came to see me with her counterpart, Mary. They wanted to get feedback from me, since I have been a permanent fixture in the halls of the ICU for so long now (Sunday marked the two month anniversary since Parker first went into the hospital, and Wednesday marks the one month anniversary that he has been in the CCU.) Durung the conversation they started talking about when he moves to Intermediate Care. WHEN!

I asked what the criteria would be for him to be moved, because to look at him you can see his life is still being sustained by machines and medicine. Francis said the primary goal would be for him to be breathing on his own, without needing to rest on the ventilator, for a certain length of time. He would have to have been fever free for several more days, his heart rate would need to remain stable, and he would need to continue to make progress in his physical therapy.

Oh, I meant to start out by saying he sat up, unassisted except for balance, for SIX MINUTES today!!!!

I asked about the fact that he still has the NG tube sucking bile and acids out before they have a chance to build up in his stomach and she said he can go to IMC with that. I asked about the fact that his abdomen is still wide open, covered by a wound-vac with a drain coming out that removes the fluid so it doesn't build up and turn into Abdominal Compartment Syndrome (see post from the worst day of my life, April 14th). Francis said that is up to Dr. Garcia, the surgeon, but Parker might even go home AND return to work with that thing attached to him, draining fluid into a little bag he would carry around with him. That really creeped me out.

I asked about the additional 14 liters of fluid he is carrying that the Lasix is helping get off his body. She said no problem, they can manage that upstairs. I asked about the VRE bacterial infection and the fact that he is in isolation. No problem, he can be in isolation up there too. I asked about the three braod spectrum antibiotics he gets IV plus the two anti-fungal from the yeast infection he got in the picc line. No problem. I asked about the fact that we couldn't get a good CT scan, and she said she would look into that (because I don't want to go anywhere without a CT scan assuring us there are no more infected cysts building on the pancreas). I asked about the insulin drip he is still on because of the infected pancreas, and about all the other things that are wrong.

In the end she said it is up to the pulmonary doctors (aka: Critical Care doctors) and his surgeon, but there is a possibility he may be ready to make that move at the end of the week!!! It feels scary and exciting at the same time. It also seems unrealistic to me and I suspect Francis wanted to give me lots of time to think about it.

Is there anything we can do for you to help you with the possibility of this transition? Francis asked me.

Yes, may we please request a room with a view?