2020 08 27

2020 08 27

Day 21

Wednesday was a better day.

Today (Thursday) we hope to follow on the footsteps of Wednesday with a little more improvement. Alex  is Still in the Intensive Care Unit. Still on 1 sedative. Still on respirator. Still on tylenol and motrin. Still on cooling blanket. Still on 3 antibiotics. . Still on 2 medicines with attempt to control what they may or may not believe is "storming". Still on 3 antiepileptic drugs. Still on Nutrition through a J tube. Still on all types of pressure cuffs massaging his legs, etc.

It has been 10 days since his scalp has had a break from the eeg lines so the eeg tech came by to remove them. This is the first time in 19 days that I could finally see Alexs hair line. He opened his eyes for a few minutes. He opened his eyes long enough to take a selfie with me and long enough for a portrait. 

I can not put into writing the emotion nor the feelings that overjoyed me...just knowing that he was somewhat untied from something, at least untied from one thing.  For those of you that know me, you know how much I hate any type of restraint at all (except for the car seat or his trike seat).  I hate. Hate. Hate. Restraining any young kid from any movement.  I understand the safety of it, I follow all restraining recommendations...I am happy to have them available to us. But just do not like them . I like them for the safety of keeping a child from going projectile or from falling....but I hate restraints that do not let you scratch your nose or wipe your chin (something that Alex did often...yet can not do now that he is restrained.)

Currently this poor kid is just plain, flat out, tied up and restrained.  He is tied to the respirator via the breathing tube that is inserted down his throat and into his lungs. He is tied to his feeding via feeding tube . Is tied to 3 iv lines and has both arms tied as a precaution to not allow him to pull out his respirator.  He is tied at the legs with his blood pressure cuff and both legs tied up to sequential compression devices.  He could probably rip all of these off if he were awake....but his body is still pretty damned sedated (tied up) while the respirator is on.

How many times do we as parents come home from a long day at work, semi stressed, pretty damned tired and yet go straight for the home office or kitchen computer to do something more. Something more like pay some bills, write and send a few billing statements, write a proposal for the next job with hopes that WE DO get that job so that we can repeat the first two (pay bills, send billing statements). Meanwhile our kid speaks out from another room "hi daddy!!!! Play trains? Or hi daddy!!! Play ball? Or hi daddy!!! Fishing? And we respond with. "of course!!!! I will be right there...give me a minute".

Time goes by, another email comes in with yet another request. We can not ignore the work, the work is our lively hood and too often others depend on our livelihood to support thier lively hoods. Time goes by, the sun goes down, you wrap up, rush to get to your kids, and....its to late...its either med time, bath time, or bedtime......

Another day just went by. Another day just went by and in that moment...on that day...in that hour....you truly do not understand the importance of that event until 25 days later when you are sitting in an ICU staring at the bedside where your kid is all tied up and cant play trains, ball or go fishing.

We all need to work. We all have a lot to do within our schedules. But realize that It is not until you are confined within the 4 walls of an Intensive Care Unit for 20 days, listening to the beeps, dings, alarms that you wish you had done something different. It is not until you get off the makeshift bed from the ICU window sill to speak with doctors and doctor teams every half hour between 7am and 1pm while your child is laid out and tied up, that you wish you had done something different. The teams come and go between. 7am and 100pm. They come unannounced and without schedule. Every team is important, so you don't leave the room because you don't want to miss them. It is not until the lead nurse says make sure that you take care of you and make sure that you eat....that you realize in your mind...well i can't eat if i don't leave....and I procrastinate because of 3 reasons....1. My kid that is so tied up and restrained at the moment is my mental and emotional lifeline right now....2. I don want to miss any important team discussion and 3. The quietness of the family room gives me way too many opportunities to wish I / We had done something different.  There should have been more train playing,  More ball throwing, more fishing....

I know you have kids. I know you have family. I know you have loved ones. Make the attempt to make each day a good one.  It truly sucks to sit here looking back wishing I had done more or wish we had done different.

Prayer...

Yesterday morning I prayed this prayer over Alex. l repeated it over and over as I felt calmer and calmer.

Sitting in an ICU is pretty darned stressful. With prayer and meditation (coffee and chocolate) I get a sense of relief and a sense of calm with each prayer...so I do more...the more I pray...the stronger, calmer and more confident I feel.  Yesterday I prayed hard and long. The morning for Alex was rocky....but he seemed to transition into a little burst of life.

After several hours of prayer....Alex opened his eyes as if he wanted to join me.....below is the prayer. You can find it on youtube where people read it to you so all you need to do is listen.

St. Pio.

Heavenly Father, I thank you for loving me. I thank you for sending your Son, Our Lord Jesus Christ, to the world to save and to set me free. I trust in your power and grace that sustain and restore me.

Loving Father, touch me now with your healing hands,for I believe that your will is for me to be well in mind, body, soul and spirit.

Cover me with the most precious blood of your Son, our Lord Jesus Christ from the top of my head to the soles of my feet.

Cast anything that should not be in me. Root out any unhealthy and abnormal cells. Open any blocked arteries or veins and rebuild and replenish any damaged areas.

Remove all inflammation and cleanse any infection by the power of Jesus’ precious blood

Let the fire of your healing love pass through my entire body to heal and make new any diseased areas so that my body will function the way you created it to function.

Touch also my mind and my emotion, even the deepest recesses of my heart.

Saturate my entire being with your presence, love, joy, and peace and draw me ever closer to you every moment of my life.

And Father, fill me with your Holy Spirit and empower me todo your works so that my life will bring glory and honor to

your holy name. I ask this in the name of the Lord Jesus Christ.

Amen 

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