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Tuesday, September 15, 2009

Big Meeting

We have our "case conference" with all of Megan's doctors, the hospice here in Indy, and the hospice from South Bend today at noon. We are being asked to consider taking her home when she stabilizes. I don't want to imagine having to care for her with the new medical interventions added from this stay to the last five months worth of care she already had. We were so overwhelmed and tired. (Not that I wouldn't, if it came to it.) But, we want to enjoy our time left without having to worry about what time it is for medications, feedings, medical procedures, etc.

I feel like I have asked all of the questions I have already regarding Megan's continual decline. Last week when the doctor on service had every other doctor consulted tell us there was no hope of giving our daughter any quality of life, it felt like they would help us with anything we asked for. So, I asked them all questions related to their specialty. When I ran out of questions for each person individually last week, I forgot to ask "What have I not thought to ask that you need to tell me?" (Not that they would offer any information that wasn't a direct question.)

It seems that even with the slightest in change of Megan's medical status, we have to be prepared for something totally different than what we were told initially.

This has left us feeling confused, deceived, and lonely. The doctors in South Bend do not have enough knowledge of Megan's health status. Whenever we bring Megan to them, they always consult the doctors in Indy, if not just place her in an ambulance en route to Indy.  I want the doctors that have helped us these past 10 years to be the ones who help us the last few days, weeks, or whatever time we have left.

I feel like everything that Megan has been a part of has been taken away. I don't want to feel abandoned by her doctors so close to the finish line. I don't want to have to transport Megan back and forth. She can't handle that type of stress. And, they may be changing the way we get all of her medicine, medical equipment, and other supplies that have already been set up for so many years.

I am very nervous about this meeting. I don't want to make any more decisions. I just want everyone to help us while we are doing the hardest thing anyone could possibly do - say goodbye to our daughter.

8 comments:

Nats said...

Hi Lori
I have been following your blog for a few short weeks and your family have been in my thoughts and prayers constantly.I have two special needs boys and in a couple of years from now I will be walking the same road, as you are now...
You are in my parayers!

Amy said...

Lori and Ken,
My heart breaks a little more for you every day when I read the next entry. I pray for you every few minutes, knowing I can't do more than that. I will continue to hold you both close to my heart and ask God's favor in making Megan's last days as comfortable as possible.
Love,
Amy "A" Wise

signingcharity said...

Grrr to all the darn doctors. You would think they would we aware of your feelings and bust their butts to help here. Praying everyone really comes to the table for you guys!

Pamm said...

Lori-
It has been my prayer, too, that your last days with Megan be stress-free and filled with good memories. Your meeting is in 20 minutes- I'll be in prayer for you before, during and after. God has a plan for this meeting and what happens after. Hang in there, Lori. Let us know how the meeting turns out.

Edward Moore said...

Guys,
My heart aches for the pain that you must be feeling. I am so glad to see the pictures of Meg smiling. It sure does brighten my day. I can just imagine what it does to yours. She will be in mine and Julie's thoughts and prayers. The love that you have shown should be a message to us all. God Bless!!!
Ed and Julie

Amy said...

Lori, I have a mix of all comments already left on here. i cant imagine your pain and completely understand your want to have the least amount of stress on all of you especially megan. I have been following your blog daily and hope to continue to see updates. I will be praying for you and thinking of you all while your meeting is happening.
In Christ
Amy Schlemmer

Anonymous said...

praying for all of you as you are heading into the meeting with all the docs may God bless each one...

Britney said...

Lori,
I've been praying for you and your family. I hope the meeting went well this morning.
May the God of hope fill you with peace as you trust in him. (Romans 15:13)