Saturday, August 10, 2013

Medical updates

The past few weeks have been filled with issue after issue.  I am not going to lie, its pretty scary.  Most nights I lie awake scared to death because I never know when that moment will be that something hits that is just not right and all of a sudden Jacob is a completely different kid.  We have already experienced a little bit of that and to see him decline is never something we want to see.  But in all reality is that Jacob is suffering from a disease that, over time, is just going to get worse and worse.  And I dont think we will ever fully understand why or accept that this is our new way of life.  Jacob catching the flu or even a small bug is one of my biggest fears.  If Jacob gets sick and for whatever reason his body does not have enough energy to fight it, it could be deadly.  And that is where we are at right now.

Jacob started a new seizure med about a week and a half ago.  It has been going great because I had only noticed 1 seizure and that was early in starting the med.  Well a few days ago Jacob came to me and said that he had a rash on his arm.  I told him he was just seeing things and it was not a rash.  About an hour later he came to me again and  again said...mommy, I have a bad rash!  So I looked at it and WOW he was right!  He had spots all over his body.  Arms, legs, back, chest, neck...everywhere!!  So I called the doctor because I knew this was just a little virus rash but I wanted to get a prescription and knock this out as soon as possible.  He had thrown up the day before and was running a fever.  We showed up at the doc and he confirmed exactly what I thought.  But he didn't give us a prescription.  He just said we are just going to have to wait it out.  Nothing they can do about it.  But to keep him inside and not take him out in the heat because it will make it worse.  Well we listened to him and kept Jacob inside.  Well the next day his fever started getting higher and he was just acting very lethargic and yucky.  By the night he was really sick!  His fever was so high and he just wanted to sleep.  I couldn't sleep at all.  I was up every hour taking his temp because I was thinking I needed to take him to the ER because his temp was raising and I didnt want him to have a seizure.  Around 2 am his fever started to come down so I went to sleep.  Woke up a few hours and took it again and it was low grade so I felt good about everything.  That is, until he woke up.  When I saw his body I was SHOCKED!  The spots had turned into huge blotches and it was ALL OVER HIS BODY!  It was so bad.  I had never seen a rash this bad before.  Tom said that he was going to call the pediatrician and see what he wanted us to do.  He called and he was not in so he left a message with another one of the doctors.  They called me a few min later and said we need to get to the ER right away!  I am so glad we did because we had no idea how sick Jacob really was.  When we got in they put us right away into a room and we saw a doctor within a few min of being there.  They did a bunch of tests on him and they just figured that it was just a really bad virus rash.  They called in the neurologist and he said that it was a reaction to his seizure med that we just put him on.

 No one truly knows how sick he was.  I didnt even know how sick he was, until a doctor had told me.  Jacob was in a crisis.  He was so dehydrated that his body was shutting down!  His body was getting attacked and he did not have the energy to fight it.  So instead it just started to shut down.  They had 2 IVs in him pumping all kinds of different things.  They had 2 kinds of fluids to help him get out of this dehydration crisis he was in.  And then on top of that they had meds to stop the reaction.  They told me that when they have allergic reactions like this, they normally give the person steroids to stop it and clear it away.  But in Jacobs case, the kearns sayer syndrome that he has, there are studies that showed that when people with this syndrome were given steroids, it was deadly.  So the doc did not want to chance it and give it to him.  So we had to stick with normal allergy meds and hope that it would help.  Which it did...but it just took longer.

Its never good when the doc tells you later on, that its good we caught it when we did.  If we would of gone a few hours later...we probably would not be coming home with our son!  Knowing that, I have changed everything about the way I view life.  It is so precious and you never really understand how fragile life is, until you are faced with the end of it.  Seeing how fast things can change with him...I have had to change a lot of the way we live our lives.  I can not let Jacob get sick again.  I can not let him be put in this situation again.  I love my son so much and it kills me to think that his time on earth can be cut short because he got a little cold or the flu;.

Just please keep Jacob in your prayers always!  We need them more than ever.