2020 09 07

 2020 09 07

Monday Day 32

+Alex is on day 32 of the Intensive care unit.

+10 days ago Alex had 11 iv lines going into him, was on respirator. Had several cuffs, had arms tied, had drains. And had internal thermometers, ekg lines, eeg lines etc.  The poor little kid was hooked up.

+Today he has 1 PIC line with 2 iv lines into it. Has heart rate monitor and oxygen monitor, 1 line into a J tube for feeding and that is it.  He is now breathing on his own, has no cuffs or ties and is free to move.

+The brain surgery and the trauma that occured during and after the surgery have beat him up pretty well, but he us a tough kid.

+He lays here in bed, is starting to open his eyes for longer periods of time. He is able to move his right hand and right leg slightly on command. He is still very weak and his energy level is very low.  He smiles and laughs when he wakes from a nap, but after 1 hour he appears pretty drained.

+For the past several days Alex has been on a rollercoaster of vital sign ups and downs. He is currently on many new medications that help and others medications that have reverse reactions. Many medications have side effects, therefore he is given additional medication to help with the side effect. For example there is one medication that helps his pain but raises his heart rate and blood pressure so I notice they give him a medication to decrease his heart rate and blood pressure.

+for the past several days Alex had a fever that they could not control. He was on around the clock medication for fevers and was on several antibiotics for several types of infections that they could not prove that he had, but treated for anyway.

+We have several teams of specialists following him. The neurology and neuro surgery say time will heal while Intensive care unit teams and Infectious disease teams need to make sure that they rule out all types of other things such as infections. They need to assure that if there is an infection, that they catch it as soon as possible and treat it.

+In the past several days the fevers had the ICU and the Infectious disease teams testing blood, urine, and stool samples several times a day. They ordered scans, xrays, ultra sounds, mri etc. 

+Alex was in bad shape. He was in what appeared to be a lot of pain between Friday, Saturday and Sunday. He trembled, shook, curled up in a ball and was just straight out miserable.

+between Thursday and Sunday Alex may have slept a total of maybe 6 hours total...he was a wreck.  The nurses gave him melatonin and that mad him sleep for 10 to 15 minutes and then was wide awake after that 15 minute nap.  They tried ambien and it appeared as if it woke him instead of putting him to sleep.

+On Friday and Saturday Alex was waking and off of sedation. Coming off sedation was really hard.  His body was now so accustomed to it that he was having horrible withdrawls. He had a look of pain, fear, agony and confusion confusion.  Alex held my hand so tight that his nails pierced my hand and he wouldn't let go.

+The nurses attempted to treat Alex by giving an emergency load of the medication that they thought he was withdrawing from, but it had the reverse effect and he would dig deeper into my hand and the power and strength of a raging bull being tortured would come through.

+It took time an experiment with medicines and a cooling blanket to control his fever and finally calm him down.

+today is Monday the 7th. He slept on and off last night between 8pm and 4am. He had a rise in temperature about 3am and we havent seen ot since.

+ we are spending one more night in the ICU and maybe if all goes well tonight we can be moved out if intensive care and onto another floor of the hospital where we can focus on rehabilitation.

+we go to another floor for recovery and then we may go back to surgery or we get sent to a rehabilitation facility outside of Boston Childrens for rehabilitation of whole body movement prior to returning to Boston Childrens for his final surgery.

+After surgery we will revisit this ICU .

It has been a tough road. We are starting to see a light. We cant yet see the end of the tunnel but we see a faint light.  We thank all of those who pray for us and all of those sending the positive energies, love and support.  We truly couldn't do without it all.  It has been 32 days of Intensive Care, Intensive stress, Intense frustration, an emotional roller coaster and a journey that thus far has beaten us up both physically and emotionally.  In 32 days of an Intensive care unit one can become crazy or looney with all the dings, alarms, beeps, machines, physical checks every 15 to 20 minutes. Etc.

One can become extremely overwhelmed with sooo many doctors and teams entering the room 24 hours a day.  They all tell you "get your rest" but they have no idea that they are not the only team.

Even with all of the action 24 hours a day, seven days a week, we find ourselves attempting to pray in-between interruptions. I dont know when I have time to think about life outside of the hospital. But I find myself sitting here and wondering what is next. What can I do to praise God for the miracle and how do I celebrate it? As I sit here bedside I kick myself for not spending more quality time with my boys. Life is to short and unfortunately it takes trauma to realize it. We all need to spend more time smelling the roses and enjoying the moments.