Sam's 6 month birthday

Today was Sam's 6 month birthday. He was supposed to be baptised today but of course that will have to wait now. He had ups and downs all day after a long night and now tonight every time I think I will fall asleep I realize he is dropping his heart rate fast again and alarms are going off, people running in etc,, It looks like the EEG continues to show abnomal encepholopathy readings indicating sharp wave over the temporal left lobe with general background slowing. He has some non brady related seizures that began this summer but were not shown on the EEG as he did not have any of those since we arrived in the PICU. His neurologist does not think the bradys (major HR drops) are caused by seizures and we know they are not proceeded by apnea or dsats or work of breathing or stress of any kind...they really don't seem related to his tracheomalacia diagnosis from Shands. So the neurologist wants a muscle biopsy to look at mitochondrial function and disorders or possible myopathys. These could effect the autonomic heart rate among other systems. Plus..his white blood count was low the other day and could be effected if the mitochondria are not transferring out the necessary white blood cells needed for fighting infections. He continues to not run any fever but feels pretty miserable anyways..His simple congestion is proving to exacerbate every thing and since he does not have a cough reflex.. it is proving pretty hard to get rid of and clear the already small airway of his secretions.

Tonight I am praying about this new avenue and all the tests they want to run .. it will be good to have an answer that helps us to understand him but I am so terrified of a bad prognosis. I am praying he calms down and sleeps well tonight so maybe I can shut my eyes. His nurse is watching carefully which helps as I fear his HR drops will  end badly if I am not watching. I am praying that Sam is strong enough to go under general for the biopsy. Today was his 6 month birthday..wow - what a crazy 6 months it has been. He is our little fighter. as I typed this he popped HR down several times pretty low but always reovering..not normal to go from 130 or higher down to 70 in like 3 seconds only to start the climb right back up. I don't get too nervous until his sats fall into the mix because I know if HR is way down and sats jump way down we are at risk of a major problem and as they can't seem to get or keep an IV in right now on him.. I fear them scrambling to get emergency meds in quick enough to save him in a crisis. It is so scarey and I know God is keeping me strong but if I had to go home with him like this I know it will be the end of me.. We have to find a solution before then. Bless his heart.. I am thankful tonight for all the prayers of friends family and even strangers.. My Sr. Pastor was here today when Sam was in a good mood and it was nice to see a friendly face. Sam's dear therapist Randi came out here today as well. Sam is so blessed to be surrounded by loving kind people who lift him up. She lifted me up to with her bright smile and encouraging support. God brings people in our path for a reason.. make no mistake.
I have a big prayer on my heart tonight. A new baby is here that may not make it and maybe I am not supposed to know much about her but in these close quarters it is hard not to hear all the hubbub and concern over a new admit. Seems this baby has experienced shaken baby syndrome from an abusive situation..I sat in here holding Sam's tiny hand thinking of how dear and precious he is to us..in agony that someone else had not realized the blessing of each of God's sweet babies.. wishing I could go to that baby and hold her. Later I heard them say the baby may not live through this..so sad..as we go day to day these past 6 months fighting for answers to make Sam ok..and then to hear another baby who had every reason to live..to be snuffed out in a moment of rage. I pray she feels no more pain and can be at peace. We are all here with our own set of purposes on this earth and I do believe however short our life may be..it matters in a big way.. our lives impact others, leaving a mark for others to follow. Countless people have left that mark on me and tonight it was this baby in making me think deeply about the gifts God gives us in these defensless children. She left an imprint on my heart. It is 2 am and I am going to try to rest as Sam is doing..
Amanda