Road To Recovery

*DAY +39 POST TRANSPLANT & 46 STRAIGHT DAYS IN THE HOSPITAL*

     It appears as though this will be quite a long road to recovery for our little Hazelnut.  We have overcome one major in hurdle in removing her breathing tube, but are facing many others that must be overcome.  But let me start with the most pressing issue for us.  The doctors are concerned because the tremors that Hazel has been experiencing, which we initially believed were due to withdrawal from the sedation meds, have been continuing; and she has not been showing other obvious signs of withdrawal (vomiting, sneezing, yawning, diarrhea, etc.).  This, coupled with the fact that she has had quite a bit of trouble forming words, has made them suspicious that something neurological is going on.  They informed us that, in some cases, there can be damage to the brain when a child is heavily sedated for an extended period of time.  The only way for us to know if this is the case for Hazel is to have an MRI done of her head.  However, she is not stable enough to have this scan done, so they decided to continue to watch for other signs of withdrawal, in hopes that that IS the case and may not have to do the scan at all.  The doctors also explained that it could be two different types of damage.  One is treatable, while the other is not.  The one that is not, depending on the severity, could either be permanent or resolve on it's own, in time.  So right now, all we can do is wait (which is so unbelievably hard!).  We beg you for your prayers on this issue!  Please pray that all of these things are related to withdrawal and not from a brain injury. The good news is that God has shown us some encouraging signs these last couple of days.  She has vomited quite a few times (who would have thought we would be happy for vomit?!), has had diarrhea, and has gone a whole day without any major tremors!  So today looked much more hopeful for us, and we need all the hope we can get!

     They also decided, two nights ago, to take Hazel off of the CVVH machine to see how she would do, since she has gotten down to a normal weight and all of her numbers have been looking good.  The biggest sign of recovery, after being taken off the machine, is urination.  The last two days, she did not urinate at all and fluid has begun to build back up again.  The fluid has even traveled a little to her lungs, making it more difficult for her to breathe and for her to need oxygen around the clock.  Before putting her back on the machine, they have decided to do another kidney and bladder ultrasound tonight to see if there may be an obstruction by the clots she has been having or if it is just that her kidneys are not quite recovered enough yet.  We should get those results tomorrow morning.  

     All of this being said, Hazel and our family have quite a lot of work ahead of us.  Brain injury, or not, she will most likely be needing physical, occupational and speech therapy.  She has not been out of bed in weeks, she has not eaten in well over a month, she is having trouble forming speech and is out of practice with many things due to this hospital stay.  Aaron and I have felt very overwhelmed at how arduous this road may be, but he said something today that gave me so much hope.  God has been so faithful to us over these last seven months.  He has brought Hazel through six rounds of chemo, several small and one major surgery, neutropenia, high-dose chemo, a stem-cell transplant, and now has given us the miracle of bringing her through this life-threatening stay in the ICU.  So what makes this leg of the journey any different?  He has always been in control, and He will stay in control for the rest of her life.  He is holding her in the palm of His hand and will carry her through this as He has time and time again.  If we focus on the future and on the "What if's?", then we will go absolutely bonkers.  But if we, instead, focus on the one sure thing we have taken hope in these last seven months, then we can move through each day as it comes with a peace, knowledge, and hope like no other.
     Despite all of her struggles, Hazel is moving in the right direction.  Like I said before, today she suffered no major tremors!  It was such a beautiful sight to see her still.  She is more alert and interactive.  She slept soundly, something she hasn't done in weeks, all last night and for most of the day.  Sleep, I believe will help her recover, so I am glad she is finally able to do it peacefully!  And Hazel's Auntie Laura even got her playing a little.  So we have been finding joy in the midst of all of this, and for that I am forever thankful.