I don't even know how to begin summing up this week.  Basically the emotional roller coaster has continued but more along the lines of stress, relief, sadness and frustration.  Coming off my last post regarding Make a Wish, we have decided to cancel the Disney trip.  I actually feel good about my decision but sad that we can never go on a family vacation (at least not with both boys).  I know it was the best decision for Avery though and that is what it's all about right now.  He is just too unstable and I cannot even imagine the medical crisis that would incur while we were in a foreign place with nurses and drs that don't know him.  We are just going to have to figure out something that would work for him. 

I am also relieved that we survived Hurricane Irene without losing any power at all.  I'm pretty sure I drove Rick completely nuts with all the supplies and tying down everything in the yard and powering everything we could possibly power in the house.  I have been through a pretty bad hurricane while I lived in North Carolina and that was pre having two special needs kids.  Although Rick's dad dropped off a generator, I was still freaking out b/c everything Avery uses requires power.  He would not have been able to use his bipap which is concerning. The last place I wanted to end up with inpatient.  Not to mention Isaiah would have had a complete nutty without his big screen tv (I am being very serious).   Rick assured me the whole week it would be fine (while rolling his eyes, lol) and  I am so glad it was.  There are still so many families across the state without power.  I sure hope it's restored soon.

On the morning of the hurricane, Avery decided he was going to started bleeding profusely from his central line for no apparent reason.  NOT GOOD.  Yet another reason for me to freak out.  He continued to do this for a couple of days.  Labs were drawn and his platelets were continuing to drop indicating that he was in the early stages of DIC (bleeding out).  Up until tonight his labs were looking like he was not clotting either.  Yet another reason for momma to freak b/c this is what he did last summer.  A redraw of labs by his veins showed significant improvement.  Which is so good.  Meanwhile ,this mornings labs as well as last weeks (which they chalked up to error) showed his blood sugars at 35 (so so not good) just minutes of getting off his TPN.  Since he had a low value last week, I decided to do a finger stick while he was on his TPN (IV nutrition) and it was 47 so I knew that the previous values were not errors and were true.  It seems the outpatient team is not too concerned about this which is frustrating the heck out of me.  Let's face it, my kid was bleeding out from his line this week with lowering platelets and has basically been in ketoacidosis and looking pale as all hell and they are not too concerned.  Really????? So can you see my frustration?

Avery is going to the pedi in the am to get his last round of shots so he can start school next week.  I will talk some things over with his pedi and have him take a look at him.  He has actually been in agreement with me about Avery's bleeding issues where as the outpatient team showed little to no concern.  I guess we just know Avery better and how he throws these little pebbles to let you know a boulder is coming.  Needless to say, I have no nursing all weekend and it's my birthday.  I have spent many of them at Children's so it would not be surprising if I ended up there.  I am just really concerned that something more is going on with my lil guy and it's not good.  I hate that mommy instinct sometimes.  Just hoping I am wrong this time. Guess only time will tell.....