First day at home

Hannah finally woke up at 2:30 am last night after being out for about 10 hours.  It was short-lived, however.  She was only awake and responsible to me for less than 30 minutes before the agitation started up again.  It killed me having to give her chloral again at 3:15 am.

After I gave her the chloral and held her until she fell asleep (about 20 minutes), I just started to cry.  Is this what her life has become now?  A few minutes of happiness followed by such agitation and uncomfortableness?  So unfair.  So damn unfair!

She slept most of the day with a three more times of brief awakeness, about 20 to 45 minutes each, before the agitation hit and she became so miserable that we had to do the chloral again.

What I would give to have her fall asleep on her own again!!

Our regular Wednesday nurse flaked on us, so our regular Monday nurse came to our rescue.  For whatever reason, our nursing agency thought it would be a good time to train someone new for Hannah — NOT!!   When this lady showed up in the morning, before our nurse did, and said she was here to shadow, I was just pissed.  No one told us, no one asked us — we were just NOT in the mood to deal with someone new.

I have to admit, I kind of had to ignore her because I just didn’t want to deal with her.  I didn’t want to have to explain everything again.   Especially since our nursing agency didn’t warn our regular nurse about Hannah’s condition – which was hard for her because she had grown attached to Hannah over the past months.  I don’t think she wanted to deal with a shadow either.

I understand the agency’s reasoning… we have three shifts open now, including the Monday once because our Monday nurse is being taken off for another case which is full time (which we are going to beg them not too).  But it just was bad timing.  If they had called to give us a heads up, we would have asked them to give us a day, even if it meant there was just another day that we didn’t have a nurse.

For the past two mights, we have had some wonderful people in our lives deliver dinner to our house.  Today, we got a visit from one of our Make a Wish volunteers who brought us a delicious dinner.   We are so appreciative!   We have been living off a diet of fast food for the past month, and not having to stress about what to give the kids for dinner (as well as us) has been a godsend.   What is even more wonderful, our friends have coordinated dinners for us for every night for the next two weeks.  Such a wonderful and welcome gift!

Ethan and Abby are really glad that Hannah is home, even if they only got to see her for about 30 minutes awake tonight.  Ethan sang his Patty Cake, Patty Cake song to her, and Abby gave her lots of kisses.   Even though she wasn’t as reactive as she had been with them in the past, there was definitely a smile and a response to their love.

Our hospice nurse came to visit us twice today, once in the morning and once in the evening.  They have been covering every single detail of our needs, and they are doing it with such care.  From med changes to supplies to everything else, we have not had to do anything today except for be present for Hannah and taking care of her.

Tomorrow is going to be a hard day…really hard.  Will explain later.