On Hold!!!

So, here we are at the hospital again.  We had two days at home before we came back.  Amelia continued to have fever after we came home and her blood count was low, so she received a blood transfusion last night.  We have been in the ER for more than 24 hours waiting on a room.  We still do not know what the plan is going to be for Amelia or what is exactly going on with her.  Lots of tests have been run, but we still don't have any answers yet.  So, here we sit and wait....and wait... and wait some more.

There is so much about having a sick child that is challenging- the anxiety over what is going on with your child, having to put so much trust in other people - often strangers to make sure that your child gets well, the sleep deprivation, the changes in your family dynamics,  the waiting, etc...

But, one of the things that is so hard when you spend day after day in the hospital is the fact that you feel like your life has been placed on hold.  Life continues to happen everywhere, and I just feel stuck.  The days are long, and the sleepless nights are even longer.  But, I just have to do the best I can to keep things going and focus on taking care of Amelia and getting her well.  She does make it easy with her sweet and joyful spirit.  Even when she feels terrible, she can almost always manage to give at least a little smile.  Over the past 27 days, we have been in the hospital for 17 of those days and I am not even sure how long they anticipate her having to be here this time around.

I feel horrible for not being able to be there for Hannah and I feel like I have missed so much with her.  This is her last week of 1st grade and I am not able to be there with her.  Hannah is amazingly grounded and and self confident, so I am sure that she is fine.  But, it hurts this momma's heart to be torn between my two girls right now.  I want to be there for both of them, together!!!

I am so ready for Amelia to be well and back to her silly old self!!! And selfishly I am ready to get life back to our version of "normal"!!!

Another Bump in the Road...

So, I thought that I would do a much better job at updating my blog.  But, it seems like before I turned around 2 months had passed.  We have just had a really crazy couple of months.  I started a new job and continued to work my regular schedule at the hospital.  I have now cut back at the hospital, so my schedule should start easing up...at least a little bit.  Spring is also just a really busy time of year for us- end of the school year combined with the girls birthday, getting ready for summer camp, trying to figure out a vacation, etc...  I am sure most families feel the same way we do this time of year.

So, to add on to our already crazy spring- Amelia has been hospitalized twice.  The first time was over Easter weekend because she had a fever of 103 and pus draining from her VP shunt.  After 48 hours of IV antibiotics, we were sent home with a topical ointment and oral antibiotics and to follow up with her neurosurgeon in 1 week.  Throughout the next week she did well- no fever, went back to school, etc...  At our follow up with the neurosurgeon he determined that her shunt could not be saved.  She was admitted 2 days later, on Wednesday, for surgery to take her shunt out and place n external shunt and the plan was to put a new shunt in on Friday- we would be home on Saturday and have 2 weeks of IV antibiotics at home.

Well, in typical Amelia fashion, things did not go as planned.  After her surgery on Wednesday the doctors told us that her spinal fluid from the week before had late growth of bacteria.  So our plan significantly changed.  Her shunt would now have to be externalized for 7 days before they felt it would be safe to put a new shunt in.  So, here we sit!!!  She is scheduled to have surgery tomorrow to place the new shunt and then we should be able to go home on Friday and continue with another week of IV antibiotics at home.

This has been our longest continuous hospitalization since she came home from the NICU.  It has been a really long week (it will be 10 days by the time we go home).  I am so ready to go home...I miss Steven and Hannah, my bed, uninterrupted sleep, having space, my house, my own routine, Zumba, etc...  For a person that is a homebody, 10 days is way too long to be away- regardless of where you are, much less stuck in a hospital room!!!

I am not one that usually likes to rush the days away, but right now I just want Friday to hurry up and get here!!!