Day +14, +15, and +16

Remember that whole pep talk I was giving myself about counting my blessings and not getting down in the dumps.  Yeah...well, Friday was my time to get down in the dumps.  This life is hard and it is 24/7 non-stop, with no breaks.  Sure, we can breathe slightly easier from time to time, but it is nothing like the life we knew before and some times it gets to me.  We've been here for 3 weeks now (really, we've been here for 8 months now) and I'm tired of the hospital, I'm tired of missing my kids and my husband, I'm tired of asking for so much help from everyone...I'm just tired.  We were really hoping to be hearing the word "discharge" sometime this weekend...but then these fevers wouldn't stop.  Thursday, the doctors began grasping at straws and testing everything there is to be tested to try and find a source for Nate's persistent fever.  He had another fever at 8pm on Thursday night, but by the time the Tylenol came up from the pharmacy, the fever had gone away on it's own.  I took that as a good sign and made my mind up that we had seen the last of the fevers (positive thinking and all).  Shortly thereafter, word came from one of the bone marrow transplant doctors...Nate tested positive for a virus and they are starting him on a heavy duty antiviral.  A heavy duty antiviral that is hard on the kidneys...on top of the other 3 heavy duty antibiotics and antifungal that are also very hard on his kidneys.  I had a ton of questions, but couldn't get answers to any of them because I wouldn't get a chance to talk to the doctors until the morning.  Friday morning, Nate had gone the whole night without a fever (woohoo!) and I was able to talk to Nate's doctor and her opinion is that this virus can be scary for bone marrow transplant kids (probably not as much for the stem cell transplant kids), so they don't want to fool around.  She thought it was most likely the virus causing the fever and if the fever never came back that we could possibly attribute that to the heavy duty antiviral...possibly not.  Here's the problem, the heavy duty antiviral is IV only and therapy is anywhere from 1 to 3 weeks, which means we just bought ourselves another 1 to 3 weeks in the hospital.  I was devastated, the thought of doing this another 3 weeks was just too much for me.  I headed home that afternoon, hoping to recharge and renew and be ready to fight another week.

Wes had opening day for baseball on Saturday, with team pictures, a hit-a-thon and a double header.  He smiled a big gap tooth smile for his pictures, won a prize in the hit-a-thon and played a great game with some great hits and fielding.  After everyone took a good nap, Wes and I got started on a surprise we've been planning for Nate for a few weeks.  Then Jen and family came over for dinner and to make some Super Nate capes for the GCU Run to Fight Children's Cancer next Saturday.

We got all our stuff together, bright and early this morning to head down to the hospital to surprise Nate before he laid down for a morning nap.  Wes, Nate and Ellie have not all been together for 3 weeks now...Nate hasn't seen any kids at all for 3 weeks.  I know I'm fun and all...but kids need to play with kids.

Wes got the idea from a book to hold a sign to Nate's window telling him that he misses him.  Nate's window is 7 floors up...so, we knew that would be a little tough.  Instead, we made a sign big enough for Nate to see from the 7th floor and took it to a place that I knew Nate could see from his window.  We also got a bunch of balloons and released them, so that Nate could watch them float by his window (if you look closely in the window on the bottom left of the picture above, you can see Nate's bald little head watching the balloons float away).  We wore our Super Nate shirts and capes and all the kids thought it was great.

Nate had a great, fever free, weekend with Daddy.  They have taken him off of all his antibiotics because they weren't treating anything and they were all hard on his kidneys.  They took his pain pump away last Wednesday and he has done great without any pain medication.  The rest of his meds are being weaned and switched to oral.  They heavy duty antiviral will stay on at least until tomorrow.  They will repeat the viral test and hopefully decide to switch to an oral antiviral.  It that happens, we are looking at possibly going home by the end of the week...hopefully.  Nate is happy and cute and willing to get up and walk and play and begin regaining his strength.  There aren't too many places to go when you're stuck in this room, so we can't wait to get him home where he can "run" and play.  The only thing left is eating...which is a big thing...but, we are hoping this will improve when he is home too.  Nate's taste buds have been destroyed, so nothing tastes how he expects it to...everything tastes "yucky".  Once we get home, we will have so many more options to offer him...at any time of day.  He will probably come home on some sort of feeding device (IV or tube) to get him through until he gets more used to his "tasters" and starts eating again.  Getting him to eat again is not a challenge I'm looking forward to, but it is what it is and I'm up for it as long as it means my boy can come home.

  The house is ready, of course there is always more clutter to be cleared, but the rugs are cleaned, everything is sanitized, air filters are changed...all we need is our Nater.