Day +1, +2 and +3

I headed home for the weekend with Wes and Ellie again, and Daddy took great care of Nater.  Nate got his first fever on Friday night and they were able to break it with Tylenol.  Then began the familiar cycle of fevers and now mouth sores.  So far all cultures are negative, which is a good thing, but they will continue antibiotics and daily cultures until his fevers stop.

I had a great weekend at home with the kids.  I had a few very sweet helpers (thank you ladies!) come over on Saturday morning to help kick off "Operation: prepare the house for Nate's homecoming".  Our house has become hopelessly cluttered over the last 7 months as my cycle of clearing out kid's clothes and toys has come to a complete hault and we seem to be acquiring more and more stuff.  I have been home so little and when we are, I either spend my day by Nate's side (when he's not doing well) or we are off seizing the day (when he IS doing well).  Now, I've always lived by the old poem, "The cleaning and scrubbing can wait till tomorrow
But children grow up as I’ve learned to my sorrow.
So quiet down cobwebs; Dust go to sleep!  I’m rocking my baby and babies don’t keep.",

but our house needs to be as clean as possible for Nate's homecoming.  So, we got to work.  We got a good start on Saturday and I continued to work in to the night after everyone left.  Wes and I tackled his room on Sunday morning and by the middle of the day, we had gotten a lot done but it looked like our living room and hallway had exploded and there were still pieces of toys scattered everywhere.  Then Chris mentioned that Lou Lou offered to stay the night at the hospital with Nate.  I was really missing him by then, but knew that this would give Chris and I some time to complete the work I had started.  Plus, we would actually get to spend some time together and sleep in the same bed!  We still have much decluttering to do, but I feel like I can breathe a little easier knowing that we got through the kid's rooms and craft area and through all of their toys and clothes!

Today, I had lunch with Wes and Ellie then headed to the hospital.  Lou Lou had taken great care of Nate, as always.  He's feeling pretty yucky right now.  He has had a fever all day long that decreases, but won't really break, despite fluid and Tylenol.  His heart rate has been running super high all day because of it.  He got some blood and his heart rate decreased a bit, but is still running high.  He is having some mouth pain and is starting to throw up mucous.  He was started on a pain pump today.  I'm hoping that the mouth sores do not get much worse, because that is really one of the worst parts of this.  I hate to see him in pain.  Nate had a turn in the play room today and made two, short trips in the wagon.  He doesn't have enough energy to do anything more than stand for a few moments while getting showered or weighed.  He is such a sweet, strong boy.  He is in good spirits and is still drinking.  He is just very tired and sleeps most of the day on and off.

I hate to be away from him but know that my weekends with Wes and Ellie and my Wednesday at work are really good for both of us.  I feel positive and strong.  This is not easy to do when you watch your baby suffer like this.  Picture your child's worst flu (with vomiting, diarrhea, fevers and sore throat) times 100...for 7 months (with a few breaks).  It's exhausting and depressing.  It's hard not to get sucked in to his pain, but I can't.  I need to stay happy and positive, so that he knows it's going to be ok.  I can't look back and I can't look ahead too far.  I have to stay in the moment and help him get through this moment and on to the next.  Soon, we will be over this hump too.

This weekend, Nate said to Chris, "I would like to take all my medicines so I can get better and go home.  Then I can go wear underwear like Wesley, because I don't want to wear diapers anymore.  I'm a big boy".  Oh man...my poor boy.  He's getting so big and smart.  He's starting to realize that this life he lives is not a normal life for a three year old.  How am I going to explain to him that we still have a good 8 or 9 months of intense treatment to go?  Radiation every single day, probably with anesthesia.  Then, on to week long hospital stays again for antibody treatment which causes so much pain that it may end up being the worst treatment of all.  I guess I will just have to explain it all to him...one day at a time.