Very Little Movement

Things are looking pretty rotten from this chair I sit in. Yesterday Maddy just slept. She got up and ate a few times throughout the day but other than that unless they came in to give her meds or do something to her she just slept. The pain in her right lung is persistent and the only thing that helps is her pain meds every 6 hours. They are giving her steroids and antibiotics quite often at this point. But it does not look as if she is responding positively to that treatment. Last night the IV in her right arm blew while the steroid was being infused. She woke up at 1AM with her forearm swollen and in pain. The nurse took it out and called in a specialty team to place a new IV. It took two different nurses trying but they finally got it placed and the remainder of the steroid going by 3AM.

I was hoping her sleeping all day yesterday would be restive and give her the strength to get up and moving today. So far no such luck. It's hard to tell if she is just tired because she was up and down most of the night or because she is just getting too weak to go on anymore. This morning we have had a rough time getting her to sit up and take her meds. Usually even when she is tired she can sit right up and talk to someone or take her meds. Not this morning!

We are still waiting on the Palliative care team to come talk to us. I spoke to Dr. Haddad about it this morning and he said he would make sure they came by. I hope Maddy can wake up and communicate enough to make her wishes known to the team. I know what she wants to do in dire circumstances but only she can tell us if this lingering fight is too much. No major organs are failing, except her lungs, so it's just a slow process at this point. I think I've said it already but it's really hard to tell if she is just tired and will bounce back from this episode or of this is it.

I may not even post this but as I sit here in the quiet next to her bed I have to do something to get these thoughts out of my head. I know there are a lot of prayers and well wishes going on out there for us. Honestly the only thing that will help at this point is a miracle. Even if she bounces back from this episode I don't know how much longer that will give her. And if she does make it through this I don't know what kind of quality of life she will have. There is so much uncertainty at this point.

I guess I will post this and try to write again when I know more.