Sunday, September 11, 2011

Okay, here is what I really wanted to blog ....

I posted that last post because I didn't want to sit and type out what is on my mind and in my heart. I just wanted to update that we are home, and perhaps it would come across as a happy post. Which it is, because we are home. But my heart is not happy. :( Emily is on a LOT of medications. She is on sedatives, narcotics, pain meds, and more. She is SO knocked out, because it is the only way to keep her comfortable. She slept for 16 hours last night through this morning. Unheard of for her, she normally sleeps maybe 8 hours a night and usually wakes up in the middle a few times. She went to bed at 8 last night, and only got up at noon today because she had pottied her whole bed up. Who knows how long she would have slept. Now she's in her chair, in front of the TV. She can't sit up anymore, so she can't be on the ground with her toys. She lays on the ground but WANTS to sit up, and it is heart-wrenching. She tries and tries and tries to sit up, while whining and looking at you for help. If she manages to sit up, or you help her up, it lasts a few seconds and then she falls right over. It's so sad. :( I told my husband that as bad as it sounds, it would be better if her cognition went down as her physical abilities do. She still WANTS to sit up, she knows she used to be able to, and so she tries over and over. She just can't do it. She can hold her head up still, but not for long. It flops back against you, or down on to the tray of her chair. In bed she just lays on her back, in the nest of pillows we put all around her. She does wake up and smile, and tries to be silly with us. It's fairly infrequent though. She just sleeps most of the day, and looks drugged and dazed the time she is awake. I know she's on a lot of meds. I know she was inpatient and really sick. I know she COULD overcome this and return to herself. But I can't help but look at her and cry ... I feel like we are losing her. Slowly and painfully. She is becoming less and less herself. :( We follow up with all her doctors over the next 2 weeks. I have some serious questions for them. Tomorrow morning I am supposed to talk to the hospice company. Emily isn't going on hospice, but she is going on palliative care which is headed by a hospice company. Hopefully the woman can help us get some RN care at home, because this is too much for any of us. She has meds 12 times a day. That includes midnight, 3 am, and 6 am. No one is getting enough sleep, and watching her drift away from us is so hard ....

23 comments:

Shannon said...

Tars, big ones. I can't even imagine. My heart breaks for her. I feel terrible for her, for you, for your family. Hugs and prayers to you all. aim sure you are doing everything you can to help her be happy.

Lacey said...

It breaks my heart and makes me nuts that there is no answer. I hate being so far away from a good friend. In just a couple weeks we will be close, and im so happy about that!

Team Carter Jay said...

I know this feeling, and I am so so sorry. It is hard to watch our little ones drift away. I went through that, and finally just had to let go. I am PRAYING like crazy that you aren't going down the same road as us. Much love and prayers to you and to Emily...and also to the doctors to help you find some answers. <3

jane said...

You don't know me, but I have silently been following your blog for years, and I check almost every day, hoping for good news in the long empty stretches. I'm not much of a praying person, but your post made me wish that I was. I am without words in the face of your sadness, but please know that I am thinking of you all. What an awful, awful thing. If there was a way to take some of what you are feeling, know there are many of us who would share the load. I'm sorry there isn't.

Reagan Leigh said...

Mitochondrial disease is a cruel one. On a good note, many kids do finally come back from these sorts of setbacks...it just takes their bodies longer to recover. I totally understand the stress and helplessness you feel, because we deal with that (although in smaller doses) weekly with Reagan's "bad" days. Reagan is also super resistant to medications (especially pain & sleep medications)...another common problem with mito often requiring higher doses and multiple meds. I'm so sorry that Emily is going through all of this...I pray that her doctors can come up with something to help her get back to her old self!!!

Kate said...

I understand, but wish I didn't. I hurt with you. I'm so sad that Emily is declining the way she is. I'm going through that with my son, too. It is heartbreaking & horrible & painful beyond anything words can express. (((((((((( I'm so sorry )))))))))))

Prayers for your strength & for Emily to begin having more periods where she is alert & interactive with you.

Elizabeth said...

This makes me so sad for her and for you. I think it's important that you use this space to express these feelings and know that we are out here, with open ears and arms, to listen and support and perhaps cry with you. I believe that it's terribly important to acknowledge your suffering -- you have been uncommonly strong and positive and it's only right and human and healthy to acknowledge your fears. I send you prayers of strength and light for Emily.

The VW's said...

I'm so sorry Sara! This breaks my heart! I wish there was an easy fix and answers too! You must be exhausted doing meds so often, etc......plus the emotional side of it is exhausting too! Thinking of you and praying! Hang in there Momma! Big Hugs!!!

Nicole said...

*hugs and prayers* - I don't often comment but I always read and you are in my thoughts... xox

Eden said...

I am glad you guys are at least home, although to send you home with that kind of med schedule and no help is a little inhumane. I am so sorry Emily is not herself yet. I hope you get your smiley silly girl back soon.

Junior said...

Sara I am so very sorry, it is heartbreaking. You guys are in our thoughts and prayers. Sending lots of hugs.

Colleen said...

So sorry to read this. 12 meds is a lot to give around the clock. I hope that you will be able to get some extra help soon. Praying for you and Emily.

Jenny said...

Oh...I just left a comment on your last post because I was reading it through my google reader, and then I came to this. And I'm so sad. I'm sorry. I can't imagine it all...truly.

Zoey's mom, Heather said...

Oh my sweet friend. I love you and your girl.Your sweet beautiful girl. My prayers are are with you always and I want you to come to this space and write and vent and yell and swear. We are here for you. Always.

Alison said...

I'm so sorry. Will be praying for you all xx

Catherine said...

It hurts to read this. My thoughts and prayers are with you. Please, please, let this be a short term thing and that you can enjoy this sweet child and she can enjoy things too.

Christy said...

I have been thinking about you all so much lately. Always hoping for good news. I am so, so sorry this is happening. It is so heart breaking to hear how she wants to sit up, but can't. I wish I could take some of the pain away. I hope you can find a good nurse to help you some so you can get some rest and recharge. Everything is harder to deal with when you're sleep deprived.

Know that you are in our prayers and in our hearts. XO

Kiera said...

I read often, but do not comment much. You are on my mind and in my thoughts and prayers. What an incredibly difficult time for you, Emily & the entire family.

Andy and Jenni said...

Thinking of your family, empathizing with your pain, hoping for improved comfort for ALL of you. Hang in there, and take care of yourself, too.

SECRET PEPPER PERSON: said...

I just cried reading this. I am so sorry. You are in our prayers which is all we can do from here. I wish we were neighbors.

dawn said...

just catching up on my blogs. sorry to hear this :( you and your family are in my thoughts and prayers. xoxo

Buttercup said...

You and Emily are so on my mind and in my prayers. Hugs across the miles.

Brad and Amy said...

I wish I had something comforting to write, but I am struggling for the right words. I just wanted to let you know that you and Peanut are never far from my thoughts. I wish you many more days of kissing her plump cheeks and running your fingers through her thick curls.