what now.......really?

I am just going to vent a little so if you don't like it, don't read it.  I think I can say I am done with trials this week, it seems like they all hit at once.  I can't take much more before I have a meltdown.  Please stop hounding me!! I finally have some nights where Jaren sleeps and I am up because of everything I am trying to deal with.  I don't even want to answer the phone anymore because I am afraid someone will want something and I just don't have to energy to talk on the phone.  I just want to crawl into bed and sleep my problems away, but I don't think that will ever happen.  I am trying my very hardest to keep us above water and I feel like I am failing miserably.

 

We went and met with a new neurologist and she was really good. PLUS she is so much closer than the UofU.  She wanted an updated MRI and I am interested to see what the progression is, he has not had one since 2007. She was very up front about telling us that she is going to treat him symptomatically because there is nothing that they can do with MLD. We assured her that we knew that and we just wanted to be treated symptomatically because we know there is nothing anyone can do to change the diagnoses. I think she will be very thorough and she will do everything she can to make him as comfortable as possible.  We had blood work and an MRI so now we just wait for them to call us back and let us know what is going on. 

Decisions, decisions

Why are there so many decisions to make in life? I had to make a really tough one this last week, after Jaren spent that evening in the hospital I knew I had to take action and find something that would help me out.  I knew that the Beehive house took people for the day so I finally made the decision to take him up there during the day while I was at work.  I know that if I had someone checking on him during the day then we could have avoided going to the ER.  I took him on Tuesday for the first time it was very, very difficult and wierd to drop your adult spouse off at a daycare, I wanted to cry all the way to work but couldn't because I didn't want to teach 4th graders with swollen red eyes.  He was really excited to go there he got up and got ready on time and we took the kids to school and then I dropped him off.  He was ready when I came back to pick him up but said he enjoyed it.  Everyone there really liked him and they said on our way out the door "Don't forget about us, we are always here" They can't wait for him to come back.  He asked our 11 year old if she would go in one evening and play the piano for all of the residents there, of course she said yes.  I feel like my kids are learning so many different things and learning about so many different ways to be compassionate to others with disabilities from going through all of this stuff with their dad.  They are more aware of how people with disabilities get treated and they are so much more caring about disabled people.  RaKelle keeps asking if I have called to ask when she can go to play the piano. 

I have been trying to avoid taking this step because I knew it would be hard, but after spending 9 hours in the ER I knew something had to happen.  I am trying to stay as positive as I can about it all but it is going to be difficult when he can't remember us and I have to make the hardest decision ever to put him in a home.  I hope I don't ever have to do that.  It was extremely nice to be at work and not have to worry AT ALL about him I knew he was being taken care of and I didn't have to call and check up on him and remind him to take his sugars and then get home and find out he didn't because he forgot after hanging up the phone.  I am sure a decision like this seems so easy for most people but to me it was very hard.  I don't know how he will react to things like this and I am not sure what will happen if he comes to a point where he is calling the other women at the nursing home his girlfriend because he has no idea what is going on and why he has to be there.

what a crazy week!!

This week has been a never ending week.  It started out ok but as the week went on the more challenging it got.  Wednesday came and when I got home from work Jaren had been throwing up all day and was really dehydrated, I thought maybe if I gave him a shot of insulin and change his pump site and make him drink a lot of Powerade Zero, he would be ok because that is what we usually do, he couldn't keep anything down including the powerade zero.  I took him to the ER because he was so dehydrated his voice was high and raspy and his lips were sticking together and his tongue was stuck inside his mouth.  They registered us at the ER and we sat in the waiting room for 3 HOURS, he was not getting any better his heart rate was 115, and he kept having to run to the restroom so he didn't have to puke in front of everyone in the waiting area.  They FINALLY called us back into a room and we sat for another hour waiting for them to start some fluids, the doctor came in and looked him over and they finally started an IV to get some fluids in him, they did blood work, the doctor then said he would be back after the blood work results were in the nurse was excellent and she was very caring and she was really concerned about Jaren.  She came in many times to make sure he was comfortable and to see that all of his needs were being met.  The results came back and the nurse told us that the White Blood Cell count was extremely high and that they were also worried about the Lactate levels they were also high.  Once he had 2 bags of fluid in him they retested his blood to make sure the Lactate level was down, the lactate level came down BUT the white blood count was still really high. 8 1/2 hours later the doctor came back in and told us that we could probably go home but that the white blood count worried him but the IV fluids made him look and feel a ton better so if he were to let us go home we had to follow up with our family dr on Thursday and we had to check his blood sugars every 4 hours even in the middle of the night.  We got home about 11:30 pm from the hospital and went to sleep for 4 hours and then back up 3 hours later to go get the kids from my moms so they could go to school.  We went to see our family dr and he didn't know why the hospital dr didn't start him on an antibiotic not only were his white blood cell count high the BAND white blood cell count was high and those are the cells that fight infection, Dr Richards started him on a heavy antibiotic and told us to follow up at the hospital lab with more blood work to make sure the blood cell count was going down.  Another night of no sleep because we had to get up again every 4 hours to check blood sugars, by Friday I was extremely exhausted and everything would set me off. I sat on the couch on Friday evening and cried for 2 hours. 

The doctor never called us back on Friday so I figured no news was good news, I looked up his labs on the website that he has with IHC and it showed that the blood cell count went down a lot, so I fell asleep Friday night and slept until Saturday morning, Yay a full night of "normal" sleep for me, which is not that long anyway but it sure felt good.  The kids have been extra clingy this week because of all of this especially Ashlyn, but we will make it through.  Thanks to my dad for waking up after a long night at work to pick up the kids from school and taking them to soccer with you to keep their minds off of everything.  Ashlyn only called me 2 times while we were there I was amazed.

Saturday was our 13th anniversary and of course he doesn't remember what day it is let alone what the date was, I asked him if he knew what we were celebrating today and he looked at his watch and said "I think so, I think it is our anniversary" I was very glad he had remembered.  He then said Happy Anniversary.  I couldn't have been happier that he remembered to say those words to me.  13 years ago we knelt across the alter not knowing that we would not be together for a long amount of time on this earth but knowing for a fact that we would be together for eternity, that is very comforting to me.  We were able to go to an amazing restaurant with some awesome friends that celebrated their anniversary this week as well, her husband has been diagnosed with and unknown leukodystrophy so she knows first hand how I am feeling.  We had an amazing dinner thanks to her friend that owns The Wild Rose at the District the food was delicious and the service was great and they wanted to do something special for us because they see how hard it is for my friend and so we did not have to pay anything for dinner.  It is an expensive restuarant but well worth the money, I know we will never be able to do that again because we would have to save forever to go there again.  The kids all stayed together at our friends house and not one of them called us while we were out which made it even better to know that they were not fighting and they were all getting along.  I can't express how thankful we were to be treated like we were the most important people in the world. 

The week started out LLLOOOONNNGGG but ended really, really well.  I am still trying to catch up on much needed sleep but I am doing a lot better today than I have been all week.  I totally unloaded everything on my friend the other night and she just listened to me and cared about me and we had a good cry today, sometimes a good cry helps. She was on her way to a birthday party for her daughter and she STILL didn't tell me to suck it up.  Thanks Mary for being an amazing friend and always making time for me to whine, and complain.  You are always there when I am down and can't get back up.  Thank you for being my best friend my entire life, I couldn't ask for a better friend.  I just hope that I am as good to you as you are to me.