2020 09 13 #AlexStrong

Enough Said.....Thank you Uncle Manny!

        Retro 5am training early birds!!!!

2020 09 12 CTF

2019

2019

2019

Alone I am a small man. I want to make a big difference but I alone can not.  With our Team C4C "cycle4cures" WE are a small team.....but we make a VERY BIG difference.

Today marked year 10 of Smilow Ride Closer to Free. For 10 years "my families" and I have been cycling, volunteering and raising funds for the event. I say "my families" because I have my immediate blood relatives, my lifetime family friends and then the "Closer to Free" family. 

10 and a half years ago I came upon a mass email from  the sound cyclist. The email made mention of a series of training rides that would lead toward a fund raising cycling event. They training rides were in need of avid cyclists and or  ride leaders.  

In my younger years I had cycled a lot. I had no issues with distance nor stamina. I had done many long distance cycling events for charities. In this time of my life I had already lost family members to Cancer. I had already lost family friends, Aunts, Uncles to the horrible desease.  At the same time I was blessed to have family members who had survived due to finding out early, due to surgical procedures, due to radiation and due to chemo therapies.

I am a small man compared to the extent of this big disease. As much as I know about it...I know nothing. Im a small man...how can I help?....I alone can not.

I want to help, I want to make a difference, I alone can not.  As I started signing up for events, I found that alone the fees and the fundraising requirements added up to much more than a simple mans budget can afford.  I want to make a difference but I alone can not.  My immediate family noticed what I was doing and jumped on board. My family knew how important it was for all of us. We all lost the same family members and we all celebrated the survivors. (Unfortunately the celebration of survivors ia not as celebratory as it should be but that is an entirely separate conversation). My family jumped right in and assured that my fundraising minimums were met, and that I had proper support through out the cycling event. 

10 and a half years ago I rode my bike onto the NewHaven green to meet up with about 20 people who at that moment had no idea that they were about change my life forever and that several of them were about to become family.

Through out the years of riding CTF I have met thousands of cyclists. As a cyclists and as a loud obnoxious singing ride marshal either yelling "Car Back!!!!" Or singing "wheels on my bike go round and round", I managed to get the attention and obtain the friendship of many.  

Through out the years the ride has grown in distance and in number of riders. Through out the years we have met, we have trained, we have saluted, we have mourned, we have become closer to one.

I am a small man, I alone can not make a difference, but I found that several people at a time My CTF family had grown...Our CTF family has grown.  There are dozens of us that have grown closer to each other over the years.  This started out as an event to raise funds for Cancer research and development.  Raising Funds it has.

This one event has brought so many of us together. We cycle together through out the year. We cycle for this event and for others. We were all brought together through this event to save lives and that we have. Through out these last 10 years so many things have changed. The training ride formats have changed, the event size, location and format have changed.  The only thing that remained the same was the fact that we all understand the importance of raising the funds, we all understand the importance of the research and clinical studies and we all understand that alone we are small and we individually can not do it alone.  Together we motivate each other, we have supported each other, cried together, laughed together, rode together, prayed together, bourbon saluted together and most of all lived together, survived together.  In the past 10 years I knew how small I was and how I alone couldn't make a big difference. Today I realize how big we are as a little team and how much of a big difference we have made over the years. I thank all of our supporters, our reststop vrew and every single teammate.

This year and the whole social distancing made it tough to get together, yet as a dedicated team we found ways to keep up the great work that we started as a family years ago and ride separate yet together in spirit. C4C cycle 4 cures. Cycling to make a difference. Today....10 years of riding toward making the future CLOSERTOFREE .

2020 09 12 CTF

 2020 09 12 Saturday Day 37

I left Alexs bedside last night.  The first time in the 36 nights of the Boston Childrens Hospital.  I waited until he was asleep at 9pm. He had an uneventful Friday.  Alex is making a little progress.  He was able to sit at the edge of the bed with a lot of assistance.  His physical therapist was able to get him to stand tall for a few seconds, But I could see in his eyes as it was happening that he was not comfortable. Currently he is struggling in several areas. We have not yet heard his voice, he has not yet woken his left or right arm and leg, he has not yet been consistent with his eye tracking. 

Alex hears my voice. Every time I make a silly sound, he reacts to it.  Every time he hears my voice he reacts to it dependent on the time of day. If it is early in the day and he has rested he will laugh. If he begins to laugh....then I can not seem to stop him.  I love to see and hear my kid laugh. Who does not like to see or hear thier kid laugh....especially after a 20 something day induced coma.  The concern here is that once he starts, he does not stop....non stop laughter is then tough to figure out.

Other times of the day little man is just restless. He rocks his body from left to right and moves his head on and off his pillow as if he is trying to lift himself up and off the pillow.  

He is no longer tied down, but only because he has not yet shown the strength to get up and move around nor energy and strength to hurt himself.

He has been layed out on this bed for too long.  It is 10.30pm on Saturday. I lay on my army cott that I set up on his right.  He was restless at 9pm when I got here. We played some familiar music, we layed him on his side and he settled down.  It is time. It is time for him to get up and start moving. I understand thing will take time. All the doctors say it will take time. I think this is the time. Tomorrow is a new day. Tomorrow is the day where we begin that training program. Tomorrow is the day where he will show the difference.

We have faith. We believe. We have the strength. We have the energy. We have the energie that you are all sending and we are going to absorb it all and provide it to Alex as required.

Jesus said..."you of little faith....get up and walk".   We have faith...so WE ARE GOING TO SIT UP. GET UP AND GET UP TO WALK!".

THANK YOU ALL FOR YOUR LOVE, PRAYERS, SUPPORT.

2020 09 10

 2020 09 10 Thursday day 35 

Alex Schedule

We are in a quiet room. We have more rest in this room than we were able to get in the Intensive Care Unit.

Alex is still very weak and very tired.

I give Alex Physical Therapy Occupational Therapy and Music therapy every chance that we get a break. We are definitely exhausted and sleep is rare around here. All of the doctors and nurses tell us to get some rest...to get some sleep. I jotted down yesterdays schedule which is almost a typical day.  There truly isn't one time slot where we have more than a two hour break.

When we finally settle in to sleep the nurse in charge is back to push meds into his tube which requires lights, uncovering him, and covid 19 face masked presence within his personal space.  Take a look at the schedule below if you want to see what little man ia dealing with.

+1200am nurse assessment

Blood pressure, temperature, vitals

+1100pm Onfi.

+1000pm clonodine. Sodium

+0900pm cefapiene iv

+0800pm Lamictal. Epidiolex.

Vinpat. gaba. Probiotoc.

+0800pm nurse assessment

Blood pressure, temperature, vitals

+0700pm day / night nurse transition.

+0630pm day nurse clean up and prep for night

+0600pm clonidine. kepra

+0500pm chaplaincy for talk and prayer

+0430pm Neurology Attending visit and review.

+0400pm nurse assessment

Blood pressure, temperature, vitals

+0300pm Pact team. Assuring that we are moving forward. Coordinate between all teams and outside rehabilitation.

+0230pm music therapy

+0200pm Neurology medicine teams review any changes

+0200pm clonodine famotidine

+1200pm cefipine

+1200pm nurse assessment

Blood pressure, temperature, vitals

+1145am Neuro Surgeon review game plan for surgery assure that still on track for september 21st surgery.

+1130am Physical Therapy

Work feet, legs, lower core. Sit up, move to chair.

+1115am speech therapy

+1100am rehabilitation medicine

Review meds and any changes

+1100am onfi

+1030am Occupational Therapy. Work arms and shoulders and upper body

+1000am infectious disease team Review his antibiotics and confirm end date

+1000am clonondine sodium

+0800am neurology team visit and bedside assessment. Review Plan or any change for the day

+0800am lamictal. Probiotic. Epidiolex. Vinpat. Gaba

+0800am nurse assessment Blood pressure, temperature, vitals

+0730am night /day nurse transition

+0645am night nurse. Bedside wash.

+0615am neuro surgery team visit and bedside assessment. Review Plan or any change for the day

+0600am Clonodine. Kepra

+0400am nurse assessment blood pressure, temperature, vitals

+0400am sodium. Cefipeme

+0400am blood work. Urine samples

+0200am clonodine. famatadine

Lord give us strength to get through this . We have a busy schedule, please bring the right people for the right task. May we work together to do what we need to do in order to have a successful recovery. Help Alex to cooperate and receive the therapy ans strength that he needs for the next step toward healing.

2020 09 09

 2020 09 09 

Wednesday day 34

On Tuesday September 8th Alex was transfered out of the Intensive care Unit and sent to the hospital floor where he will continue his recovery.

Alex no longer requires Intensive care. He has proven to have stable vital signs and requires a less Intense atmosphere.

Within the intensive care room he was within a pressurized room, Temperature controlled, and surrounded by state of the art medical equipment. The room was what Alex needed....but it was cold loud and very stressful. The room is what Alex needed....but there was never a 20 minute segment without someone stepping into the room to check something. Throughout the day and night, doctor teams checked his eyes, his vitals, his reflexes etc.

Too many times within the 30 something days of Intensive care, teams would come in, do some type of review, some type of physical or visual assessment, etc. During each of the reviews or assessments, I would make attempts to read the body language or read the "through the covid mask and goggle" expressions. Sometimes they do the assessment and just walk out. Sometimes doctors look at each other in confusion, worry, or disappointment.  As a parent sitting bedside I get the vibe, the gesture, the difference in the voices heard through the covid masks. 

On Day 33 it was a breath of fresh air to see the eyes and hear the voices of the doctors who say "wow he is doing so much better than expected". I sit bedside, I see that this is no where near the Alex that I know, so I think to myself..."wait...wait and you will see the tough guy soon enough" When I hear the comments, I realize how bad the situation was and now how busy we will be to get him back to his normal.

For 33 days I watched nurses and doctors, I listened and accepted the dings and buzzes of all alarms. I tolerated the cold temperatures and loud noises and wondered how my poor kid could stand all of it. I sat bedside and wondered where the heck he obtained the strength, stamina, patience and will power to put up with it all.

I know deep down that He truly had no choice....but still, he was a tough guy to get through this all. We could pray for his health and strength....bit he has to have the strength to accept it....and he did.

 Every night I sat bedside and every night I shook my head and asked "why are we here? How could things have gone so wrong? How long before we get back to normal? God....you have a plan...we are not sure why the plan took us down this road...but we wait, we have patience, we have faith and we have hope."

Our faith and hope has saved us several times.  Our faith and hope clearly didnt keep me from breaking, didnt keep me from falling apart, keep me from questioning my faith, keep me from questioning if there truly is a God or that guardian Angel that we all hear about. I have faith but this still broke me, broke me to pieces. There is a saying that you can break...you are allowed to break. Crayons break...but no matter how much they break the pieces can still color the same beautifull picture.  So I break but my faith tells me that this too shall pass and that things will get better. My Faith didnt tame those crazy emotions...my faith only helped me to believe that it is hard right now but will get worse before it gets better. This has proven true time and time again in the past several days.  When a doctor comes in the room, sees Alexs eyes open and his laugh or smile the doctors eyes open to a wide open eye, they stop short in thier step and almost all say "woah...thats not the same Alex we saw last week, he looks soooo much better". Seeing him hourly I dont see the big difference but those who see him every 3 days are noticing the difference.  To hear the comments now after hearing the negativity of the first week proves that I was right to have Faith.

Today on day 34 , We are in a normal hospital room now. It is quiet, peaceful, we have only 1 connection to his feeding tube and the typical heart rate and oxygen sensor. Other than those 3 wires he is free to move so long as his body is ready to.  Thus far today, it is noon and he has had physical therapy, occupational therapy, and music therapy to get him to begin movements. 

Last night Alex slept the entire night.

This has been the first night in over 8 days that he has been able to sleep so peacefully

This morning at 4am we were both ready to start the day. Alex wad able to stay awake and semi cooperate with commands for a few hours and then was just over tired and ready for sleep again. His strength in moving or lifting arms or legs is still almost non existent, the attempts and slight movements exhaust him.

We are in a quiet place right now. We have a room where we can actually hear ourselves think and hear ourselves when we talk or need to listen. The room is large and bright and has a great view over Boston. This morning little man and I were up way before sunrise and were able to then see it rise over the buildings in the distance.  Watching the sunrise in the peace and quiet gave us a sense of calm, a sense of relief, a faith that this may just be the start of the new begining.  It is quiet, it is calm, it is bright...and it just may be exactly what Alex needs to recover. I have Faith in that.

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.

2020 09 04 Friday Day 29

+Alex is still in ICU "Intensive Care Unit".

+Tuesday he was having a good day but his fever started going up again.

+Alex had a bad Wednesday and Thursday.

+In the last 48 hours, Alex has only slept about 4 hours total.

+He is off if the respirator and lungs look and sound fine. He is on room air and no oxygen required.

+I believe he took about 6 to 7 days to titrate off of his sedation medicines. As he is coming off of the medicines he is becoming more alert and we see more movement.

+Unfortunately, the more awake he is, the more he appears to present as if he were in pain.

+Alex is being treated with potent antibiotics for infections, yet he continues to have a fever that will not go away.

+Alex has a tremor that comes and goes, doctors do not classify it as seizure, so they do not know what it is. All we know is that he has them and medicines given do not appear to stop them.

+right now for fevers, alex is on high doses of tylenol, motrin, 2 potent antibiotocs and a cooling blanket.

+2 nights ago we were loaded him with ice packs by the hour. Today we have a water system running through a blanketed coil. We had it below him before, today we put it over him to see if we succeed.

+The several teams of doctors are all confused at all of these events.

+today we are again scheduled for more blood draws. More urine samples, etc. We are scheduling another MRI to compare this to the last. The mri will hopefully rule out any critical issue in the brain.

+going to MRI requires that he get the breathing tube and respirator again and that he be sedated again.

+We are nervous about all of this but need answers. Our little man has been nothing but strong and courageous for the past 28 or 29 days. He is one hell of a fighter. He has so much more strength than I. He has shown us all how to keep getting up. There is something foreign going on in his body and he is hanging tough and fighting hard until its gone.

+thank you all for your prayers, your positive thoughts and energies.

+please look back to recent dates on the blog for prayers.

2020 09 01

 2020 09 01 Tuesday Day 26?

+Alex had a better day today.

+The respirator was removed and he appears to be doing well on room air.

+The eeg lines were off today so that his scalp can have a break.

+he is only in 1 sedation medicine Midazolan and will be taken off of it before 4am wednesday.

+he is now only on 2 antibiotics

+he is currently on 5 anti epileptic medicines. Lamictal. Kepra. Vinpat epidiolex and an Onfi bridge until he is completely off sedation.

+today he was able to finally sit ip in bed with the help of 4 nurses.

+he has shown movement of his right side and a very little movement of his left arm and leg.

+he has had a hard time sleeping and maybe slept 6 hours total since Saturday 8pm.

+We have come off of a lot of sedation medicines and have introduced new medicines so quickly that his body had a hard time adjusting and keeping up.

+doctors are all working feverishly to adjust medications to get Alex to a comfortable place.

+Alex has a long way to full recovery. In the past 26 days he has gone through extremely difficult, challenging, testing times.  Alex has proven his strength and God has proven to us three or more times his mercy and his miracles. Alex was in really bad shape and the Lord had mercy on us, laid his healing hand on him and brought Alex through. We have had and continue to have our challenges. We have been in the intensive care unit for 26 days, we may be here a few more before we move to another floor. 

+Alex has lost a lot of mobility and will require rehabilitation at a rehab facility here in Boston. We dont know when we will head for the rehabilitation facility.

+We do know that he requires one more surgery and are waiting on rhe scheduling. Once we have that surgery he will require sedation, intubation and ICU all ovet again. Hopefully with much much much shorter stay!.

+after that surgery we will revisit rehabilitation before we can return home.

Prayer.

It has been a very rough road. We ran into circumstances or these horrible situations that were so overwhelming, so frightening, so uncertain that we continuously walked around as if we were in a nightmare. It felt as though every word out of everyone's mouth was just bad news. I prayed. I prayed hard. I prayed to all angels and saints. At times i prayed so hard and so disparately until I felt thier presence. I prayed so hard until I received signs. I prayed so hard until my dreams spoke to me. Some will say...yeah that is what twenty something days within an ICU will do to you. I believe in God. I believe in prayer. I believe in the intersession of angels and saints. I believe that we all individually have a designated guardian angel. We have been through a lot. We continue to be tested. We are tested over and over and every time we fall to our knees to beg our God to help us get right back up. We are on our knees praying that the Lord God give is the health and the strength. We ask our guardian angle to give us a hand and help us stand strong while keeping us from falling yet again. 

We have been through some tough times. Lord help us through. Give us the strength to stand tall, strong, shoulders straight and head up. Let us see the positives in all that we are surrounded by.  I dont know how I could have endured any of this if it werent for prayer, faith, hope and positive energy that I can truly feel coming my way almost hourly.

The doctors come in daily, sometimes several times a day, they look at him and each and every one of them say "uhm he is looking alot better and stronger than expected."

Yes sir....thats my boy Alex....and his ability to absorb and accept all of the healing from above and all of the positive energy from around...

Thank you all for the prayers, the positive energy, the love and the support.

2020 08 30

 2020 08 27

Sunday Day 24

Saturday was a better day

Today (Sunday) we hope to follow in the footsteps of Saturday with a little more improvement. Alex  is Still in the Intensive Care Unit. Still on 1 sedative. Respirator just came of at 10:00am. Still on tylenol and motrin.  Still on 2 antibiotics. . Still on 2 medicines with attempt to control what they may or may not believe is "dis autotomia???". We are now on 4 antiepileptic drugs. lamictal, epidiolex. Kepra and vinpat. Still on Nutrition through a J tube, but will change the consistency and add fiber. He is Still on all types of pressure cuffs massaging his legs, etc.

Saturday we were able to do physical therapy a few times and he is begining to react a little stronger.

Saturday he was a lot more awake.

The sedation medicine (medaz....) Is being reduced every 12 hours. As it is reduced we see him a little more awake. Saturday afternoon he woke up at 2pm and remained wide awake and craving attention for 6 hours.

At 8pm he started twitching and showing signs of pain. They removed his breathing tube this morning and have been giving him pain medicines.

This morning he laughed for us a few times while we showed him his favorite bowling pin toys from home.

It was a breath if fresh air to finally see his eyes open for more than a 10 minute period.  The Doctors and nurses would come into the room to medicate and or adjust him and or turn off the beeping machines that supply the medicines or feeds through the several iv lines. They see that he is awake and say..."ok buddy....it is time to get some rest"

Mom or I step away and hope he takes a nap so that he can come back stronger.....but he lays there. He turns his eyes toward mom or I and just watches. Earlier in the week I had placed a maraca in his hand and told him..."if you want me to sing or play...shake your maraca and I will come". He lays in bed, eyes looking my way. I drift off to a much needed nap and he shakes the maracas. The nap can wait...I go hang out bedside again.  Saturday was a blessing, Alex was making progress in showing us that he can watch us and he can start moving hands a little. Saturday night he started doing some strange twitches that present as if he is in pain. We do not yet know what that is...so that appears as if it will be the next challenge.  Seizure wise, At home he was having 12 during daytime.  Last Sunday without seizure meds he recorded 26,  Monday 8, Tuesday 2. Wednesday the leads were off so could not record,  Friday 4? Saturday not sure maybe 0-4?  Alex is being monitored by video and eeg leads. The neurologists reading the information all have varying opinions of what is or what isn't a seizure.  If we see something that appears to be an episode we push a red button and the team replays the video and eeg reading to see if it recorded as an epileptic episode or not. Some of the button pushes don't record as episodes.

This morning his respirator came off. We can finally see his face.

This morning he laughed at a little sill game. What joy to see.

We pray for forward motion. We pray that the road ahead flattens out a little.  It has been pretty darned bumpy for past twenty something days.  Everyone tells us that we have a long road ahead...we get it...we know...that God that we have awesome support....

Prayer.

Lord thank you for a start in the recovery. We ask for complete, whole body recovery. Lord only you can bring this all together at your will.

We pray to you Lord through the intercessions of Mary. Joseph. St. Anthony, St. Jude, St. Lawrence, St. Gerard, St. Perigrine, St. Pio.

We pray that all of our angels and Saints (named or unnamed) intercede for us.

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 

.

2020 08 26

2020 08 26 Day 20

Alex opened his eyes for about 15 minutes on Tuesday evening

Our Status.

It has been a challenge to control all of the vital signs but it appears as if we are getting closer and closer to stable. Over the weekend the biggest challenge was to bring his fevers down. As a parent (at home) we would give tylenol and motrin and they go away with time. Here this is an entirely different situation. Doctors need to rule out everything that it is NOT in order to can get closer to understanding what it is so that they may treat the cause.  In the past several days we have had numerous blood draws. Numerous cultures taken. Spinal tap, Mri. Ct scans and xrays. They initiate the exams and www.  (we wait and worry). Most often we are then told what it is NOT, but not yet certain of what it IS that is causing the fevers...so there is this other test that we should do...blah blah blah

It has been 20 days in the intensive care unit. In the past several days we have seen progress in several areas despite all of the ongoing testing and poking, uncertainty, etc.

We are on new seizure medicines and they have made a difference for the better between Sunday and Tuesday. Sundays report was 26 episodes (that occured but our eyes did not see) and Tuesdays report which had 8 seizures, 5 of which occured in his sleep between the hours of 1000pm and 100am. I only mention the time here because this means that he is in a safer environment when seizing. We want No seizures but if he has to have them we rather he be on his bed than at the beach or on the road when having them.

Alex is still on the respirator and will remain on until his seizure meds are defined and at safe levels.  When the seizure meds are at safe levels they can begin to reduce sedation and remove the breathing tube.

It has been a rough road but we think that we may be seeing a light at the end of this dark tunnel.

It has been 20 days but I believe that today is the day that will start all of the recovery.  I have faith that we have gotten all of the crap out of the way and it is now time to start focusing on rest. Recovery. Rest. Recovery. Repeat....  

Prayer:

Mark 11: 22-24

"Have faith in God," Jesus answered." truly I tell you, if anyone says to this mountain, 'Go, throw yourself into the sea,' and does not  doubt in thier heart but believes that what they say will happen, it will be done for them. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and It will be yours. And when you stand praying, if you hold anything against anyone, forgive them, so that your Father in heaven may forgive you your sins."

God bring healing to this child. May he stand. Walk. Talk. Run. Ride. Dance and play with us all as soon as you give the word God.

Cycling Analogy:

We believe we can ride and get some distance...we just need to wake up.

2020 08 24

 2020 08 24 Day 18

Alex Status:

Alex is still in ICU. He cant seem to shake the fever. When his temps are lower he is able to open his eyes and begin to move his right arm and leg a little and signs of attempting to move his left.  When his temps are down he is able to gently shake the rattle that he has in his right hand to get our attention.

Most of his vital signs are still fluctuating up and down, but we are able to get closer and closer to stable with fine tuning the medicines.

Our Status:

It is very difficult to sit by and watch. We watch Alex sleep and find it difficult to not have the ability to go over wake him up and see his reaction when I say "lets go throw rocks in the water at the beach".

It is very difficult to sit by and watch the display monitor that shows all of the vital signs because our own vitals go up and down with each and every number and we are certain the nurses wont hook us up to any of the life saving iv lines.

It is difficult to leave his side. Getting Breakfast, Lunch or Dinner is a break that everyone says we all need, but to be away and not know if he is good or bad, better or worse, burns the gut from the inside and the food just doesn't have texture nor flavor. We know that we need to eat, we know that we need the nutrition to fuel and regulate ourselves so that we have the strength to watch over him.  To sit at the cafeteria with the daily special before us almost gives us a sense of guilt.  We don't want to eat our dinner until we know his is ready. We know how much he loves his eggs and ketchup, so to eat the eggs without him by our side is a pretty tough task.

We as parents stand strong by his side because we are his strength. Even though as parents we see him in a rough spot and feel so helpless, we understand how powerful we are with our prayer, our courage, and our positive attitude. We totally understand that if we cry...he cries. If we sing and shake the maracas, he follows and does same.

We thank you all for your continuous support, your continuous prayers and your positive energies sent our way.  Alex will soon be out of here and able to give you all high fives for the prayers, energies, love and support.

Hymn to St. Jude:

St. Jude the oft forgotten,

You shall remembered be,

We hail you now in glory

And have recourse to thee

For help, for the despairing,

When hopeless seems the task

And from the Heart of Jesus

Through you we favors ask

Prayer to St. Jude:

O glorious Apostle, St. Jude Thaddeus, true relative of Jesus and Mary, we salute you through the most sacred heart of Jesus. Through this heart we praise and thank God for all the graces he has bestowed upon you. Humbly prostrate before you, we implore you through this heart to look down upon Alex with compassion. O, despise not our poor prayer, let not our trust be confounded.  To you God has granted the privilege of aiding human kind in the most desperate cases. oh, come to Alex's aid that we may praise the mercies of God. All of our lives we will be grateful to you and will be your faithful client until we can thank you in heaven.  Blessed Apostle, with confidence we invoke you. St. Jude, help of the hopeless, aid Alex in his distress.

St. Jude thaddeus, pray for us and for all who invoke your aid.

Most holy apostle St. Jude Thaddeus, faithful servant and friend of Jesus, the name of the traitor who delivered the beloved master into the hands of the enemies has caused you to be forgotten by many but the Church honors and invokes you universally as the patron of helpless cases and things despaired of. Pray for me who are so needy; make use, I implore you, of that particular privilege accorded to you to bring visible and speedy help where help is almost despaired. Come to my assistance in this great need that I may receive consolations and succor of heaven in all my necessities, tribulations, and sufferings, particularly for a strong, speedy, recovery for Alex. And that I may bless God with you and all the elect throughout eternity.  I promise you, O blessed St. Jude, to be ever mindful of this great favor, and I will never cease to honor you as my special and powerful patron and to do all in my power to encourage devotion to you. Amen.

Our father. Hail Mary. Glory Be to the Father.

St. Jude Thaddeus pray for us and for all who invoke your aid.

Cycling Analogy:

We lightly spin, we move a little, at the moment it seems as if we are counting on the tail wind at our backs (everyones prayers, positive energies and support).  We appreciate the tailwind but know that soon enough we need to get to pedaling.

2020 08 22

2020 08 21 Day 15

2020 08 22 Day 16

Status:

Still in Intensive care unit and in a deep sleep for most of the day.

We did see him wake about 4 to 5 times on Friday. We were able to give him bedside physical therapy and he was begining to show a reaction with left and right leg and a stronger reaction with his right arm.

He was showing ability to lift his right arm ans smack the stop sign.

In the afternoon we were visited by a music therapist. She played the guitar softly while we sang. Alexs eyes have not been so open and alert in 16 days!!! He listened as we sang "I the Lord of sea and sky...I have heard my people cry....here i am Lord, is it I Lord...." It was sooo heartwarming to watch him listen.

The musical therapist then played a soft song with the words shake within it. She placed maracas in Alexs hand. Once he knew that the maracas were there....he shook the one in his right hand. Soooo overjoyed to see him shake the maraca to the music.

The remainder of the day was a juggling of medications to control his fevers. He is very agitated when people touch him and very tired after 15 minutes of wake time.

Our Status:

We are so happy to see that he is reacting and hope that we see more daily. 

We are frustrated to see that his fevers are not easily controlled. We are frustrated that it is taking so long to jump start.

It is taking a lot of energy and persistence to get a little reaction, but it is soooo worth it... so we pray for strength, courage and the stamina required to get us all through and over this.

Prayer:

Saint Anthony;

O Saint Anthony! Saint of Miracles!

Saint of Help! Alex has need of your assistance;  We have need of this special favor; guard Alex while he sleeps, help Alex to heal before he wakes. Give Alex strength and courage to wake up valiantly. Give Alex strength and stamina once he wakes to start moving and grow stronger. We carry your image with your illustrious name and we invoke you St. Anthony to do justice for Alex at all times. Help Alex at his present and urgent petition: Help Alex to rest and heal before he wakes. Saint Anthony,  Saint of Miracles, pray for us.

cycling analogy.

We spin...we get a little distance.

2020 08 20

 2020 08 20

Day 15

Status:

Still in deep sleep. He tries to come out of it. Yesterday morning and afternoon they introduced seizure medicines to control episodes that he started to present. We were told this morning that for the night shift between 7pm and 7am the eeg had not shown any sign of seizure activity...no episodes recorded. (They will go back to look in detail). We hope that they can find the right cocktail of medication to control his seizure episodes while controlling all other things as well. The goal is to increase seizure medicines and decrease sedation medicines safely so that he can begin to wake and show us what he can do.

This early morning his temperature spiked. We arent sure of the cause, It could be infection, pain, or both.

Fevers are common in these situations, but we rather not have one right now. He ia on medication for it and on a temp controlled blanket.

Yesterday they started going up on his normal nutrition through a J tube every 4 hours. He appears to be tolerating it, so they increase the amount every 4 hours. Hopefully this will make him stronger.

Last night he showed signs of his stomach and bowels waking up, (step in the right direction).

Yesterday afternoon the Physical Therapist showed us a few bedside stretching exercises for Alex. Through the wires, hoses,  etc. We gave him PT 2x yesterday and it appears as though both feet and legs gave us a little push back. He raised his right hand a few times when he was frustrated.

Our Status:

We sit and watch. We are starting to see a little more of him as they peel ivs, Wires, and hoses away one by one. He still has a lot of wires, iv lines, hoses, pumps, machines, etc. but in our eyes a big difference is made every time one wire or iv is taken away.  This all remains a horrible roller coaster ride of his and our health, feelings and emotions. When his eyes open or when we feel that slight resistance in his feet or legs or hands, we are overjoyed, yet when any of his vital signs go up or down and the alarms sound, we panic, skip a breadth and wonder...what the heck is next??? What now???  It has been 15 days of watching him this way. Yesterday and today are nowhere near comparable with the stress level of day 2 thru 5. We don't wish that fear, stress, nor anxiety on anyone.

Today He lays still, he opens his eyes a little, he is showing us that he wants to wake up.  He opens his eyes. It is clear to us that they are not focused.  We put on the tv with his favorite videos and he looks. He has a plain stare, but seems to be trying to follow the colors for a short period of time. We stand by his bedside and sing to him. We think he hears us. His eyes sometime follow us or the sounds that we make.

Prayer.

God make today a new day. Make today a day of change. Bring strength and healing to our child.  So many people pray for our strength healing and recovery. Please hear thier prayers. Through the intercession of Jesus and Mary we pray.

Cycle analogy:

We spin a lot. We are moving a little.

2020 08 19

2020 08 19

Holy Infant of Prague pray for us.

Hourly Novena

O Jesus, Who has said, "ask and you shall receive, seek and you shall find, knock and it shall be opened," through the intercession of Mary,  Your most Holy Mother, I knock, I seek, I ask that my prayer be granted.

We ask that Alex receive the healing that he needs to recover and return to riding his bike and searching for signs and hydrants.

O Jesus, Who has said, "All that you ask of the Father in my name, he will grant you," through the intercession of Mary your most Holy Mother, I humbly and urgently ask your Father in your name that my prayer will be granted.

We ask that Alex receive the healing that he needs to return to kicking that soccer ball into the goal.

O Jesus, who has said, "Heaven and earth shall pass away but my word shall not pass away." Through the intercession of Mary Your Most Holy Mother, I feel confident that my prayer will be granted.

We ask that Alex receive the healing that he needs to return to running around the house playing trains. Bowling. and hide and seek with the rockets and doggies.