Saturday, October 2, 2010

I'll apologize from the very beginning...this post will be scattered and unorganized. I'm just going to unload my brain.

Saturday must be my designated "hard day", because I am feeling really sad again. How is it that you can miss someone so deeply, while being only inches away from them? I want her back in the worst way. It is a desperation I have never felt before.

I spent the night with her last night. It just works better for me to go in after my kids are in bed, so I got there around 10:30. When I got there, they were cleaning her up. George called me over and said for me to pay attention to how they were doing it, because he didn't feel they were doing a good job. For one, they took her foley catheter out, because the doctors apparently thought it was giving her a urinary tract infection. I don't doubt that, but she is nowhere near ready to tell us when she needs to use the bathroom, so now, after only a day or so of the catheter being out, her skin is completely raw. I stood at the head of her bed while two staff people were getting her situated. The look of pain and desperation in her eyes will likely forever haunt me. She doesn't really have the mental capacity right now to tell them to stop or that they were hurting her...instead, she just gets this really pitiful look on her face. I told them she needed to have another catheter to allow for her skin to heal, so the nurse got it ordered.

The rest of her night, she had her eyes closed, but she was extremely restless. Her hair is completely matted now, even though we tried super hard to keep that from happening, so I can only imagine how much her scalp itches and the hair is pulling. She also scratches at her face a lot and her legs are constantly on the move. I would rub her, talk to her, straighten her out, attempt to brush her hair, and just be right by her, but nothing helped. Around 4 or 5 AM, she finally fell into a deep sleep.

At 7:30, my mom got there, so we just sat on the empty bed next to her talking. At around 8, one of her primary doctors came in (not a specialist...just a general medical doctor) and was very quick. I hate feeling rushed. I asked if we could maybe start to try to transfer Leslie to a chair a few times a day to get her out of the bed. She said no, her heart was too unstable to put any type of exertion on her. That was sad for me.

The nurse and nursing assistant came in at around 8:30 to wash her up then I got to feed her breakfast. It was nice to be able to actively care for her. I have been longing to do SOMETHING for her ever since this happened, so I really get a sense of fulfillment from that.

At around 9:30, a cardiologist came in and really broke my spirit. The first thing he did was stare at the bed and my belongings, then say in a really surprised tone "you guys aren't staying the night, are you?" We told him we were, that she wasn't ready to be alone since she couldn't ask for help if she needed it.

Then he told us we would have some difficult decisions to make this coming week. We already knew they wanted to do an MRI of her heart and a cardiac cath, so the procedures weren't a surprise, but he implied she would have to make more improvements neurologically before we could do any of this. That didn't make any sense to me, because we have learned that it could take months to years before we have her back mentally, if at all. When I tried to get him to elaborate on what he meant, he said something along the lines of "the chances of her even surviving the initial incident was less than 10%. You realize that, right?" No, genius. I had no clue that if your heart stopped, there was a good chance of death. It was like he was saying we needed to just be thankful she was still with us, and stop asking for anything more.

He also said her heart has gone into some sporadic irregular rhythms, but clearly nothing that has hurt her. He said another option may be to put some type of vest on her that has an external defibrillator in it, and send her to rehab to recover more mentally, and then going through with the other procedures. And of course, he also had to remind us that she still could die before we do anything. And then he left! It was awful.

My mom and I talked a bit more and decided that before we made any big decisions, we wanted to sit down with the cardiologist and neurologist and get everyone on the same page. I just hope the doctors agree to this.

I feel like all along I have had a very realistic idea of what was going on. I think, if anything, I have been really pessimistic about all of this. I haven't let my hopes get too high about ANYTHING. Then this doctor comes in and knocks me down even further than I already have been, and it hurts.

Prayers are needed more than ever. We cannot lose her.


Denise S said...

You are definately in my prayers and heart.......don't let this get you discouraged. We have a MIGHTY GOD and you are such a strong strong person. I'm praying for Leslie and just as importantly so, for strength for you and all the family.

Anonymous said...

I am so sad reading this and so sorry the doctors can't find a little more compassion. I know how hard they all work but to lose that sense of humanity for you all and the understanding that this terrible event has impacted more than just leslie is heartbreaking. I firmly believe that if leslie weren't meant to be here she would have been lost that day. God has a plan for her and it may be muddled now and hard to understand why this happened I think we will all understand one day. I know there is very little comfort in that right now though. We pray everyday for strength to get through this, not just for leslie but for her family as well, and we pray for her healing. Don't lose hope or the strength to be the advocate she needs right now. They'll try to knock you down but just keep getting up and fighting them with every ounce of love you have for her!

Velisia said...

Laura, I'm praying and thinking about you guys everyday. Don't let all your emotions and hope rest on one inconsiderate doctor. You know she's come a long way already and with the great support you and everyone else provides her, she'll keep making leaps and bounds. Leslie is a strong person and I'm super optimistic that the old Leslie will be back soon enough.

Anonymous said...

It would be so nice if they would at least find out the root of the problem before they start casting even more negative stones into her future.
If they can't figure out what caused this to happen, how can they decide what an effective course of action for the future is?
I pray every day that you'll get answers and that something can be done to rehabilitate her. This is so sad and I am so sorry this is happening to all of you. Much love and prayers are being sent your way every day.

Anonymous said...

Hi Laura...

That doc is just one guy. He doesn't know what's going to happen any more than you do. Keep on doing everything you're doing. As her sister and a nurse, you are her advocate. Don't let one person dash the hopes and prayers of the rest of us.

Laura, if you want to give her a head to toe bed bath, just let me know and I will help you. I have Mon and Tues off. We will give her a spa day! There might even be Lemon Cake... - - Jackie

Sarah said...

what the heck!? i wonder if it might help to share this blog with the doctors?--you are a double threat, in that you know Leslie inside and out and are a nurse. Leslie is tremendously fortunate to have you as an advocate and caregiver. as a parent of a young child, i recognize How Much you are doing. take care of yourself, too. i hope your plans for a doctor conference work!

Erin said...

Stay strong Laura! We are all praying for Leslie and (as my doctors told me as I struggled) "That's why we call it the 'practice' of medicine. We just don't know everything."

Little Mama said...

Dearest Laura,

I was told this week alone, 'a doctors job is to be honest without taking away a person H.O.P.E. Sounds to me like this Dr. missed a few classes on Faith, Hope and Human Compassion. Leslie has already showed us God's hands at work and will continue to do so. Lifting our voices to Our healing Father's ears for a continuing Miracle. Love

Linda Ellis said...

Don't get discourage Laura. Sometimes doctors don't know themselves and give you the worst case scenero and it is never right. So keep your hopes up. There is a product that you can put on Leslies hair for matting. If you want, I will look for it for you and get it and drop it off. Have you ever thought of taking her to U of M? I truly believe Leslie will regain all of her skills. She has been saying very positive things and no one know her like her family. Just keep your spirits up and will pray for all of you. Actually, I think princess sounded pretty close to what she said. Speech is hard to come back, but I know she will do it. Anything you need. Linda

Thomas said...

You got to find a way to go around the problems. Sis had a CT and MRI while still bed ridden. I don't know how they pulled it off but they did (she was in Pittsburgh, PA). Talk to some doctor friends & coworkers - there has to be a way for her to get the scans she needs. After a pacer/defib is implanted she will not be able to get a MRI because of the high magnetic field. Sis also had her pacer/defib installed before she went into rehab. From what I have heard Leslie probably needs a heart device (pacer/defib?) sooner than later. Find out if the hospital can assign a case manager - someone to pull all of the doctors info together and be sure info is shared between doctors. If the doctors pull together they should be able to map out a plan and path at getting Leslie into rehab - including implanting a device or other heart treatments. Ask about a patient advocate and question about the cardiologist's comments. Switch doctors if needed. Maybe a hospital switch is needed if things are not moving fast enough.
If you would like, I'm happy to discuss the events during my sister's treatment for heart failure and the resultant brain injury. Jerry has my phone number.

fatima said...
This comment has been removed by the author.
fatima said...

Dear Laura,
I was going over your blog, many things touched my heart .. One of them was the primary doctor making you feel rushed.. *that was me* and I really apologise for sounding that way that day. I explained to your mom the next day, that we may sound less compassionate and we may spend less time with les, but it doesnt mean taht we care less. Its just that not all people have the same way of expressing compassion, care and love. I hope I will be forgiven :)
Love to Les,

October 25