When I walked in today I found my husband Perry looking extremely wiped out with the alarm bells ringing on the heart monitor in Nicks room. Nicks heart rate was raging out of control moving between 138 to 150. Perry said he tried everything to calm Nick down and nothing was working. It seems that now that Nick is waking up more and more so is his brain and body. He is contracting his muscles tightly and his heart rate is shooting up while his brain keeps creating something called Central Fevers.
Perry’s face this morning and Mr. Nick running the show reminded me of days gone by when our children were very small and I would go somewhere and I would leave Emily and Nick with Perry and sometimes when I would get home Perry would just hand the babies over to me because he was spent, done. It is hard to figure out what someone needs when they can’t speak and like all parents now and before us you try 50 different solutions and sometimes nothing works.
This was one of those days.
As today progressed Nick would get better and then worse and now as I type this he is worse with no relief in sight. If we give him more heart medicine his blood pressure could crash which is no good and if we do nothing we will spend the night with beeping machines and us trying to find a way to make Nick comfortable.
We have darkened the room we have propped pillows all around him we have played soothing music and I have sung in his ear. Massaged and stretched him and checked all places on his body for any sign of pain. I have prayed and meditated and finally just held space for this moment of madness.
The Cardiologist isn’t concerned about Nick’s heart rate because it is steady and not rhythmically off so he doesn’t want to change his heart meds. We explored using an anti anxiety med to see if he will respond to that but if we do his breathing could be compromised and his oxygen saturations could dip and that is not something we want either.
When Nick was small he would get super high fevers and I would have to give him ice baths which I may have written about in previous blogs. I would pace the floor with him. Sing songs to him. Put wet washcloths on his head and sometimes cried together. Then Nick would finally be so exhausted he would crash and I would crash (Perry would be at work because he always worked midnights otherwise he would be doing the same thing.)
That is what I am hoping for right this very minute, Nick just getting exhausted and falling to sleep because he is so tired just like old times.