Day +120

Sorry I have not updated since we got out it just has been soooooooooooooooooooo busy. I do not even know where to begin.

We finally made it to the RMH Monday evening around 5:45pm. I rushed over here because the Home Health nurse was supposed to be here at 6pm to help me hook up Alicia to all of her IV meds for the first time. I was very nervous and to top it off the Nurse was an hour late. She finally got here at 7pm and we started unpacking the 7 HUGE boxes of supplies that were delivered just before she arrived. After all of the boxes were open we started hooking her up. It was such a huge mess in our room!!!!!!!!!!!!!!!! I still hadn't been able to even start putting anything away from moving rooms on Saturday. Finally around 11:30 pm we were done hooking her up and giving her all of her other meds and the nurse left.

Yesterday morning I had to wake up at 6am ( minding I just went to sleep at 1am from unhooking her and throwing all of our stuff in the back bedroom, I didn't have one bit of energy to even try to put anything away ) Any way I started again with the one med I give her every 8 hours at 6 am and then had to unhook the other two that were connected overnight and give her steroids also and then it was time for PO meds again. We finally got all that done around 11am and that is when I finally got to give Alicia a much needed Bath.

I started to finally put stuff away around 2pm and sat down to rest around 4pm. I do not remember going to sleep but when I woke up it was almost 6pm and time to feed her and start all over with her IV meds and the Nurse got here to make sure I was doing it right. Finally once again I was done with everything around 10pm and tried to put more stuff away but I got tired very fast so once again it did not get done.

They are doing room checks on all rooms tomorrow so I hope I do not get in alot of trouble because I am not even close to getting it all put away. And to top it off the Air Conditioner here is not working and it is very very very hot in here. I have a fan blowing on Alicia at all times but that scares me to death because that could make her sick. I almost wish we would of waited another week to come here so we would still have some air. It is still in the high 80's here and there are no windows to open.

I finally laid down at 12:30 last night and slept til 6am. I hooked her up to her 2 hour med and took a shower than unhooked her over night meds and packed up and went to Day hospital for our infusions. We were there til almost 7pm ( thank goodness for air ). As soon as we got back it was time to start all over again on her nightly meds which I now know takes over three hours to do. I did them all by myself this evening and that made me feel good!!!!!!!!!!!

Tomorrow morning we have to be back at the hospital at 7:30am and they already told me it will be another long day.

So with that I hope everyone understands why I could not update, plus I finally dug deep enough into putting our stuff away to get to the computer. ( but far from getting it all done. )

I soooooooooooooooooooo can not wait til Erika and Anshon get here so I will have some help. Hopefully by the time Denise gets here some of h=these meds will be history but if not I know they all three will be a huge help. I just want to sleep for a whole day and not wake up!!!!!!!!!!

I once again need to ask for prayers for my friends daughter Abby. She was admitted again today. She is bleeding inside and loosing blood but they do not know from where yet. They are both so VERY dear to me. Reid has been the best friend ever through all of this. Please keep them in your prayers. Her web page is carepages/abbypatterson.

I will update soon. I know this will all get alot easier as soon as I get used to it and have a routine down.