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 ....

Settling in at home

Emily came home Thursday from the hospital, and we are so glad to be at home! Beyond glad though, we are tired. She gets meds 12 different times through-out the day. Plus cathing, emptying her g-tube drain bag, IV antibiotics, etc ... it is non-stop. I imagine that some day in the future I will be able to cook dinner again, right?

An update from Club Med ...

Emily has been inpatient for almost 4 weeks straight now. She has battled two blood infections, a urinary tract infection, a line removal and a line placement, multiple xrays/CT scans/ultrasounds/labs/cultures/etc. She is still dependant on the pain pump to get through her days. We are supposed to start her on an oral med though her j-tube, in order to get her off the pain pump. Unforunately no one at this hospital is an "authorized prescriber" of the drug. What the hell - are we really putting something this serious and scary in my tiny little princess?

In the meantime, we hang out here day after day. School starts on Wednesday. I will be home with Jacob Tuesday night and Wednesday for her first day, and then back to the hospital. He will be shuffled around from friend to family member to friend and back again, as we try to keep his life as normal as possible. Luckily he doesn't have tennis lessons this week, so it's one less thing to stress about.

Yesterday, Jacob and I went to this amazing place called Nurtured by Nature, thanks to the Starlight Foundation. We go to meet and play with armadillos, porcupines, snakes, and otters. It was INCREDIBLE! I am so thankful for a day of fun with my boy, he so often gets skipped over when Emily is in crisis.



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