2020 09 16

 2020 09 16 Wednesday Day 41

Sunrise through our window

I sit bedside and hold Alexs hand. Alex gives me the beginnings of our secret handshake. His hand trembles, his hand is weak, but he gives me an all out effort to go through the motion that we call our "Snap". I hold his hand and make funny sounds, he likes the "ducks quack", the "swish" and the "splat". Alex hears the sounds and he laughs. Alex doesnt seem to get tired of hearing the same damned sounds over and over and over again. For as long as he can tolerate the silly sounds, for as long as he continues to smile and laugh at the silly sounds, I will continue to provide the silly sounds. Currently my silly sounds and his correlating laughs seem to be the only communication that we currently have between us...so at this moment I live for and I love every minute of it.  I know where we have been in the past forty something days. I know the pain that we suffered and the agony that we lived through in the past forty something days.  Today I sit bedside, I hold his hand, I make thes sounds and realize how fortunate I am to have been given the opportunity to sit bedside and make these silly sounds that make my kid laugh. I am blessed to have the opportunity to witness, to see, to hear my kid laugh.  Alex isnt the same kid that walked through these doors forty something days ago but I have faith that with time he will be. It is impossible for me to truly express what I felt in the past forty something days. It has been a nightmare that I can not and will not ever wish on anyone. Life as I once knew, as WE once knew it will never - ever be the same...that I know. Now....with that being said....I have time... WE have time...We definitely can not dwell on the HELL that we just went through. The dedication, the energy and the focus must now be on making this little man...."THE MAN". The focus is now on strength and recovery.

This is where all of the prayers, the positive thoughts, positive energies, the Lord, all of the angels and all of the saints need to lend us thier hands. With many hands make lite work. When he lays..may the hands of the Lord cradle him so that he may rest peacefully, when he sits... may the hands of the Lord support his back and neck so that he sit steadily, when he stands...may the hands of the Lord lift him so that he may stand strong and tall.  in the past forty something days we have gone through a time that we termed "HELL", this poor kid has gone through a lot! We beg for better days.

2020 09 15 Tuesday Day 40

Alex is recovering on a normal floor of the hospital. Slowly we are removing medicines by decreasing doses on a schedule and slowly we are transitioning his nutrition from the "IV" line and the "J tube" and into his stomach via his "G tube".  It is a slow process but the safest process. We have taken a few steps forward and we have taken a few steps backward. I say a few steps back, for example, Over the weekend a physical therapy session cost him an accidental pull or tug on his feeding tubes that then required emergency surgical room visit and an emergency procedure to rethread and replace what had been accidentally and mist likely painfully tugged out out of him.

Yesterday we made the first attempt at feeding via his G tube which is how he obtains 50 to 60 percent of his nutrition at home. After meeting with several teams throughout the day a plan was set and a flow rate was determined. Once determined, mom and I asked that they cut the rate in half so that he would get less per hour to avoid upset stomach and vomiting.  Teams, Doctors and nurses followed through.

Yesterday Alex had a tough time with his Occupational therapist Melody which works his hands, arms, shoulders, neck, upper body, etc. Alex appeared exhausted from not yet having slept an entire night.

Alex was showing signs of discomfort on and off. He has times where he laughs and other times where he looks pretty darned miserable.

Yesterday Alex had a tough time with his Physical therapist Jessica. Alex was tired and not giving her his undivided attention. Jess, Mom and

I worked together to get little man to sit and to stand (assisted) alongside his bed.  It was great to see how tall he was, but he didnt look comfortable at all. Alex stood up 3x (assisted) and was able to sit at the edge of his bed for a little while. At the edge of his bed he was able to make an effort to kick a volley ball that we have in the room. The required helmet is still a little heavier than he can support, so he is having a tough time lifting his head.

Yesterday Alex had a tough time with the speech therapist, but not as tough a time as with the other therapists. Alex is not yet speaking nor making sounds. Speech is working with his visual movements and attempting to get him to make choices with his eyes.  If he begins to make choices with his eyes, then they can format a computer program that will assist him in communicating with us.  Mom and the speech therapist worked together and claim that they made progress.

Last night Alex was very agitated. It was very difficult to calm him down. Alex was rapidly moving his head from left to right continuously between 6pm and 10pm. The poor kid looked so uncomfortable, yet I feared allowing the doctors to give pain meds (morphine) or sleeping meds (ambien) that each had reverse effects when given in the Intensive Care Unit. Last night at 945pm (I state the time because it was the same for several nights in a row. It was the same Friday, Saturday, Sunday, ) he fell asleep and slept very well until midnight.

At midnight he woke and was aggitated and wouldnt fall asleep again. 2 hours past, my energy level diminished and I gave into the nurse and doctors recommendation of giving Alex Ambien. 

The nurse gave him Ambien and Alex vomited within 5 minutes. He shook or trembled for 10 to 15 minutes after meds where given. Alex Vomited and appeared very agitated for several minutes. After several minutes he appeared as if he were a different kid. He was then calm, focused and relaxed.

He then slept from 3am to 6am. Over night Alex got a total of 5 hours.  It was no where near enough sleep for this little guy, but it was better than nothing.

Sleep or no sleep the surgeons and thier teams, doctors and thier fellows, the nurse and thier C.A.s still keep coming.  The cleaning crew still enters, the laundry crew still retrieves. The alarms in our room still ding on and off, but luckily only for completion of meds or nutrition.  Alexs sleep schedule is off, he is unable to rest or focus. We all work toward giving him the most rest possible, but we cant let him lay for to long. We all want him to rest, but we also need to visit, poke, test, lift, lay, touch, feel, and recheck in order to assure his safety. Day by day we do less of each which is a sign of recovery.

Alex is not yet anywhere near the same child that walked through these doors forty something days ago. At this moment he is still unable to speak, track with his eyes, grip or kick with his right and unable to move his left.  He lays in bed and we work with him to sit , grip, move.  We have made strides in range of motion with everything except his left arm. Today we will receive a hand brace and by end of week we will do botox injections with hopes to get his range of motion back.

This week we work toward Mondays surgery. Monday they replace the bone that they removed. After Monday he will be safer to work with and will not require a helmut. After Mondays surgery recovery we hope to aggressively target Physical, Occupational and Speech therapies.

Today I sit bedside.