2020 10 06 Alexs Eyes

2020 10 06

This morning Alex opened his eyes. Yesterday morning both eyes were swollen shut. On Saturday night Alex had an unfortunate bedtime diaper change incident where he bumped his eyebrow/ forehead on the siderail of the hospital bed. An emergency ride by ambulance brought him back to the emergency room at Boston Childrens.  Here we are again three days into this stay under going MRIs and LUmbar Puncture and blood draws to confirm that the insane amount of swelling to this poor kids head is only a bump and not also a bump with infection.  Alex is on all of his original nine medications (original since surgery) and now two new antibiotics and a probiotic.

Last night he didnt sleep well. He was taken off one seizure medication and maybe the lack if it caused issue.  He however was able to open both eyes this morning. At four am When I opened my eyes from the short nap I heard him laugh, I leaned over and saw the white ans brown and cried tears of joy.  This poor kid had his eyes swollen shut and was swinging at his pillows with aggravation and frustration. I cant even imagine what was going through this poor kids mind. All the pain from the surgery, the inability to move, the inability to speak and now here he finds himself laid out flat and unable to see???? OMG!!!!!!  WTF???? 

How do I gain this kids trust again? Every day I wake and tell him that today is going to be a good day. Every day I go through the morning routine and tell him that everything is going to be alright..... This kid still holds my hand as if he is comforting me.  When things are about to happen he grabs my hand and I am blessed to have him do so. A few weeks ago he xouldnt grab anything. When he is about to be pinched bu a needle or touched by a nurse he turns, he tries to bury his head in the pillows. i tell him things are going to be alright and he straightens out. He trusts me. I am heart broken when so much uncontrollable crap happens. I hold his hand everynight before he goes to sleep. I tell him that tommorow will be a better day. Tonight he squeezes my hand. He squeezes tight as if to tell me he is alright, he slips his fingers under mine for the secret handshake and snaps as if to tell me that it is all good. We are all good.  We promise that things are going to be ok and we secret hand shake to seal the deal. This isnt good, this has been a roller coaster nightmare from hell, yet this kid can slip his little hands under mine to give me that secret handshake that lets me know that we still have a deal.