The Waiting Game

This has been one of our most random stays in the hospital.  We first came with tube issues, back in with apnea issues, Jayse started vomiting and having diarrhea and having a low-grade fever, and then he started running a fever of 104.  We finally got the doctors to look into something beyond his Chiari malformation, and we have discovered he had a UTI.  He's never had one before.  We had to wait to see what grows on the culture to determine the type of infection, but they started him on an antibiotic to start working on clearing up the infection.  Just when I had started to relax and think about discharge, we had a new surprise.  Red diarrhea.  I started crying and freaking out.  I was terrified there was something wrong with his tube!!!  The docs came and thought it looked and smelled like blood but took a sample for some testing.  An hour later we learned it wasn't blood, but that Jayson had a reaction with the antibiotic and it colored his poop red.  In the next couple of hours, he had four more full diapers.  Instead of discharge, we were thinking about putting him back on an iv because he was losing too much fluids.  Sigh.  Ups and downs.  This week has been a crazy rollercoaster ride.  I still hadn't let myself totally internalize the bad news we had heard and the upcoming surgery.  I was feeling exhausted and drained.

I tried my best to lift my and Jayson's spirits and make the most of our stay.  This time I brought us Christmas lights to make Jayson's hard hospital bed into a magical winter sleigh to take him and I off to dreamland...

Jayson had a good night without any more full diarrhea diapers.  Things had slowed down, slightly.  We were once again looking at discharge.  Jayson's fever was gone and he was playing and rolling around in his crib.  He was hollering and telling him mommy he wanted to go home.

The doctor team came in and told me I would need to get an order from my pediatrician to get an ultrasound of Jayson's kidneys since he had a UTI.  I remembered that I actually already had an order for a kidney ultrasound from our last genetics visit.  We felt we ought to have his kidneys checked because many kids with genetic syndromes have kidney problems.  I prayed we wouldn't find anything, because I really didn't think I could handle any more bad news.  The ultrasound seemed to go well, although I could tell the tech was spending more time scanning one side.  She also found something and was measuring it.  It looked like a stone, but I had never heard of a baby having a kidney stone.  I tried not to borrow trouble and waited patiently for the results.

While we were waiting for results we had a wonderful surprise visitor!  Santa Claus!!!!!  I cannot tell you the magical feeling I felt when I saw him.  He knew my Christmas wish was to be home with my son, and the twinkle in my eye told me my Christmas wish would come true.  He got together for a picture and gave Jayson a blanket for Christmas.  Jayson wasn't afraid of Santa like many kids his age!  He thought he was so soft, and he loved his jingle bells.

The team came in an hour later and said that his kidneys looked normal!!!  Huge relief!!  No heart defects and no kidney issues!  This is such a relief considering we know Jayson has a genetic syndrome, but don't know what it is yet.  The doctor did say, however, that he does have a decent sized stone in left kidney.  She seems to think that it will dissolve and go away without problems.  I hope that is the case. I got the little man dressed and prepped to go home.  I even had a little fun taking some pictures in the hospital of his new owl hat and his new tubie teddy bear friend.

We were so fortunate to have the same nurse for three days in a row.  She was one of the very best nurses we have ever had, and we have had a LOT of nurses.  She cared so much about Jayson, and she wasn't afraid to confront and challenge the doctors, and give her medical opinion.  Next to the parents, the nurses spend the most time with the patients, so I appreciated all she did for Jayson.  Of course we had to get a picture!

It felt good leaving the hospital, but not the way it usually does.  It is different knowing we will be back soon for a big procedure, and that things will be scary at home while we wait.  It feels weird knowing we are going home trying to keep our son alive while we play the waiting game in anticipation of a surgery that will save his life.

Maya always gets soooo excited when we come home.  This time was different.  She was so worried.  She kissed Jayson all over and wouldn't listen when I told her to stay away.  And Jayson was different too.  For the first time, I could see that Jayson missed the puppy.  He reached out to her for the first time and rolled towards her.  I could tell they are going to be the best of friends one day...

The first day home was awful for Jayson.  He was in incredible amounts of pain, rubbing his eyes and head and crying.  I hope that the three weeks of waiting will not be anything like this first day home.  I hate waiting...