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.

2020 08 19

2020 08 19

Day 14

(Typing from my phone from bedside with no spell check, but somehow there is a weird auto correct that I do not recognize. Overlook the errors.)

Status.

Yesterday Alex opened his eyes a few times. He lifted his right arm a little and was able to wiggle his toes.

We turned on the tv for a little bit and it looked like he may have been stimulated by the colors.

On the afternoon he had a surgical procedure to insert a second feeding tube so that he may begin in-taking his normal nutritional formula.

Before going down to the procedure he was starting to wake and showing us signs of moving forward.

He had a little sedation to get to the surgical room, through the procedure and a safe return from the procedure. When he returned, he began having seizures. He was given sedation to relax him yet again while they get back up onto his old seizure medicines again.

Yesterday we again took one step forward and one step back. We will be making adjustments throughout the day with hopes to move a little further forward on the next step.

Prayer.

Lord God. Give Alex the strength. stamina and courage to get through this all.  Lay your healing hand on him and clear him of all illness as you restore him to health.

God hear us. Jesus heal us.

Mary and Joseph intercede for us.

St. Jude intercede for us. St. Anthony intercede for us. St. Gerard. Intercede for us. St. Peregrine intercede for us. St. Pio intercede for us.

Cycling.

This is one of those days...we are riding, gears are slipping, we thought we were getting distance, but in this higher gear that we are in...we are just spinning. We change to a different gear to get moving and it skips...frustrated we feel, hear and see it skip again...we go back up and just spin again. He hope that the bumps in the road will help to set things into place. We pedal a little more and hope the chain gets to do something differently the next time we try...we pedal and plan in our minds to give it another try in a bit...it will work then...

2020 08 18

2020 08 18

Day 13

Status

Mondays mri showed progress. The mri is showing reduction in the swollen area of the brain and no sign of new inflammation. This is a great sign!!!.  We understand that we still need time for the inflammation to reduce completely, but that takes time. Alex has been very deeply sedated for 13 days between surgery, the issues that arose, the swelling go down and his brain recover. Now that the mri allows us to see reduction in the swelling, doctors believe that it may be safe to began reducing the sedation medications. In reducing the sedation medications Alex should began to slowly wake, open his eyes, and begin to move a little more.   Yesterday Alex began to slowly move his right hand, lift his right arm and wiggle his right toe when poked. He still has a breathing tube down his throat and appears pretty annoyed by it. He lifts his right arm to grab for it. They are closely monitoring his breathing (respirator needs) and taking steps toward removing it. Tuesday and Wednesday doctors want to restart the bedside neurological exams where they make attempts at seeing what reactions he will have when they annoy him, but the respirator may be keeping the doctors from doing what they need to do and Alex from reacting the way that he should.

There are a few drains in him that were placed from the emergency surgery, today they make steps toward removing them.

He is currently on iv nutrition through a major iv line. He is getting lips through an iv line.  Today they will take a step toward introducing formula (that he is accustomed to having at home) into his stomach at a very very slow rate.

Our Status:

We watch. We listen. It truly is an emotional roller coaster. When Alex opens his eyes or slightly squeezes our finger, Our hearts rejoice, a tear in our eye and deep breadth can be taken.  We regain the strength to eat can tolerate what we eat, and can sometimes even taste it.

Several days ago there was no tolerating the food, there was no taste. We know we need the fuel. We intake whatever but remember that it had no taste, we went through the motion of chew. Swallow. Repeat....and most importantly..hold it down.

Today Alex opened his eyes. He squeezed my finger. He has great news for me today,  so i can somewhat smell and taste my coffee and I can taste the ketchup on my eggs......hey Alex i can taste the ketchup on my eggs!!!

Prayer:

Mary Mother of Jesus,

Our Lady of Lourdes, Our Lady of Fatima. Intercede for us.

There is a connection between Mary and the number 13.

Seeing that this is Alexs' 13th day in Intensive care, I pray toward Mary.  Mary,  Mother of Jesus forgive us our sins. As we pray to our God, for the healing and recovery please intercede for us. 

Hail Mary:

Hail Mary, full if grace! The Lord is with thee; blessed are you among women, and blessed is the fruit of your womb, Jesus. Holy Mary, mother of God, pray for us sinners, now and at the hour of our death. Amen

Hail Holy Queen, 

Hail Holy Queen Mother of Mercy, our life, our sweetness and our hope, to you do we cry, poor banished children of Eve. To you do we send up our sighs, mourning and weeping in this valley of tears. Turn then, most gracious advocate, your eyes of mercy toward us, and after this exile show unto us the blessed fruit of thy womb,

Jesus. O clement, O loving, O sweet Virgin Mary

Cycling Analogy:

We are pedaling. For the last couple of miles the gears on the rear derailer were skipping. Every time we drop down to get a little distance they skip and we go back up. We spin...we dont get the distance we want....we make that little adjustment on the gear cable at the handle bars. We pedal and get ready to try changing the gears again with hopes for more distance.

2020 08 17

2020 09 17

Day 12

Alex Status:

Sunday Alex made several attempts to wake up. He opened his eyes a lot but it didn't appear as though he could see.  He is still heavily sedated. The doctors want to keep him as calm as possible to allow his brain to recover therefore they sedated him a little deeper.  Most of his vital signs are giving the impression that the swelling in his brain is going down. He may (or may not) be having an mri this morning to confirm that this is true (that his swelling is going down).

Sunday he was on less medication and holding his stance so an mri was scheduled.  Over night the eeg showed that he may be having  seizures which in turn increases his blood pressure. As of last night and early morning todays focus is now to manage his seizures and reduce his blood pressure.

Our Satus:

Right now we sit in a chair about 10 feet away from him. We sit and watch him sleep. Even though he is entangled in wires. Iv lines, respiratory hoses, bandages, Eeg leads, pressure cuffs and temperature regulating blanket. 

We sit and watch him sleep.

We listen for his breathing even though we can not hear a thing over the mechanical system that recycles the air within the room nonstop.  The force of the air supply and return is so loud and intense but we hear it and we put it in the back of our mind.  The sound of the mechanical system is there, it is loud but it doesn't effect our being.

We listen for his breathing as we pray but often get interrupted by the dings, beeps, honks and the flashing lights of the pumps that supply his medications and his ivs. We often get interrupted by the loud alarms that beep, ding and or honk when his vital signs or respiratory numbers go above or below the set parameters. Every time one of these alarms goes off (which 2 days ago was very often) our hearts skip a beat. Each beep, ding, honk lets the doctors know of an issue. Each beep, ding and honk raises our blood pressure, our anxiety. Etc.. (A good sign is that Sundays alarms were very much less than Saturdays and Fridays).

We sit and watch even though we can not completely see him the way that we want to see him...we sit and listen even though we can not hear him the way that we want to hear him.

Prayer:

Lord God. Remain by Alexs' side.

Help him to recover peacefully.

Lord Thank you for the progress that we see and we want to thank you in advance for the cures and the healing that YOU WILL bring today.

This is another day, O Lord. I know not what it will bring forth, but make me ready, Lord, for whatever it may be.  If I am to stand up, help me to stand bravely.  If I am to sit still, help me to sit quietly.  If I am to lie low, help me to do it patiently. If I am to do nothing. Let me do it gallantly.  Make these words more than words, and give me the spirit of Jesus

Amen.

Cycling Analogy;

On the flat road. We pedal. We pedal and feel like we can push...we push just a little and the gears skip. It is annoying...we want to push to get the distance and the gears skip...

We change gears to where they wont skip and we pedal...take a deep breadth tell ourselves that we should be content here because we will be alright.

2020 08 16

2020 08 16

Day 11

Status:

Yesterday Alex opened his eyes several times throughout the day.

Alex softly squeezed our hands a few times. We have no idea of what he is thinking.  I do not know if he is scared, confused or calm and trusting.  We sit. We wait. We sing. He tolerates.

During the night he hardly closed his eyes. His eyes are not focused on anything. But he keeps opening them. He is trying hard to wake up and appears to be showing us that he is frustrated about what is going on. He is begining to show movement through his right arm a little more. He is under heavy sedation to keep him calm and to keep him steady. Sedated so that he can calmly heal with time. The readings are showing that his brain appears to be healing. Monday we confirm it with an mri. He is Sedated so we wait.

Prayer:

Psalm 27: 13 14

I remain confident if this:

I will see the goodness of the Lord

In the land of the Living.

Wait for the Lord;

Be strong and take heart

And wait for the Lord.

Isaiah 41:10 (To descendants of Abraham)

Do not fear for I am with you. do not be dismayed, for I am your God.

I will strengthen you and help you;

I will uphold you with my righteous right hand.

Song.

You shall cross the barren desert

But you shall not die of thirst.

You shall wander far in safety

Though you do not know the way.

You shall speak your words in foriegn lands

And all will understand.

You shall see the face of God and Live.

Be not afraid...

I go before you always.

Come...follow me...

And I will give you Rest...

Cycling Analogy.

We pedal...its a flat road right now. We are warming up (but its still dark) we feel like we may have our legs...but since we dont know the route and cant see clearly we pedal cautiously and slowly.

2020 08 15

Day 10

Status:

Medications: Alex is on less medication and showing to remain somewhat stable with less swings.

He is currently on 2 medications (continuous drip) to keep him in his deep sleep. He is on 1 pain medicine (continuous drip). He is on an antibiotic that is covering infection of brain and lungs.

Breathing: Alex is intubated and oxygen is being provided through line in his throat at a slow rate.

Nutrition: He has an IV line that is providing him with proteins and calories and a second IV line providing lipids.

His State:

He is deeply (supposed to be completely) sedated so we had not felt him squeeze our finger nor wiggle his toes until this morning at 6:45am. Up until now he  has shown a little reaction of open eyes when the doctors do the annoying routine lung suction about every 4 hours.  At 645 I stood over him, held his hand, and this time felt a different level of warmness. His  nurse Ryan was pronouncing the medications for me and Alexs eyes opened and his fingers moved within my hand.  Alex gave a little gag through the respiratory line that is in his throat as a sign of him trying to cough. He was quickly given a bolus of sedation to calm him and not allow him to get overly excited. 730 neurologist came to see for themselves and Alex very lightly responded to the command of "Alex squeeze my hand".

This is a good sign!!!!

We sat here for 9 days waiting for a sign...today his eyes opened, that's a sign... oh the joy to see that. Oh the joy to feel his fingers soo soo gently squeeze my hand. I want to squeeze his hand so hard and pull him off his bed to go about some other type of daily routine...a routine other than the routine that we are currently in....but today he is here, we are here...he gave us a sign that he can hear us. He let us know that he hears us. Doctors say this is great...but we need to let him rest so that he can heal and get his strength.

Thank you for all of your prayers, your positive thoughts and energies. Keep them coming.  On a separate blog I put up a short list of some prayers that we have been praying over him, feel free to backtrack on the pages to see.

Readings and Energies:

James 1: 2-5

"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything."

James 1: 6

"But When you ask. You must believe and not doubt, because the one who doubts is like a wave of the  sea, blown and tossed by the wind.

Cycling analogy:

The road is pretty flat right now. Not sure for how long...It feels like we are warming up...we are moving forward. We are starting to get a little distance while we are not putting as much effort into it....we just pedal...and are thankful that we can pedal, the fog is starting to lift, we can see a little bit more ahead of us, and start to record some distance.

Prayers for Alex

These are a few of the prayers that we pray while we sit bedside.

To our God:

Our Father, who art in heaven, hollowed be thy name; thy kingdom come; thy will be done on earth as it is in heaven. Give is this day our daily bread; forgive is our trespasses as we forgive those who trespass against us; and lead us not into temptation, but deliver us from evil. Amen

Holy Infant;

Infant Jesus, through the intercession of Mary,  your mother, we beg Your help in Alex's needs.  We believe that You are all powerful and can protect Alex. Full of confidence, we come to you, knowing that You will give Alex graces.

Lord God

Heavenly Father, watch with us over your child Alex and grant that he may be restored to that perfect health which it is yours alone to give; through Jesus Christ our Lord Amen.

Lord God

We praise you for your compassion and your goodness. Marvelous are your healing mercies.

Lord as sickness has invaded Alexs world, we wait and feel helpless. Lord that we are not helpless but all powerful in prayer.

We lift up to you Alex and ask for your healing power to fully permeate every part of Alexs body.

Lord we ask that Alexs body be quickly transformed into radiant health as you respond to prayer and your healing promises in the world.  in Jesus' name I pray.

Lord God

You are the Great Physician.  

Alex needs your healing touch

Lord you are the healer of weakness,  viruses, chronic conditions, diseases, and You are the healer of our child Alex.  As we ask you to heal Alex, we will declare by faith that Alex IS receiving your abundant healing power right now and that Alexs' health IS steadily improving.

We declare that we will not look at what our eyes see, but we will look at what our faith sees. We will feed our faith concerning the healing power that is bringing health to Alex.

We will stand strong by hour biblical words: "By his stripes we are healed."  Thank you in advance Lord, for bringing your awesome healing power into Alex. Lord we praise you for healing Alex. In Jesus' name we pray.

Hail Mary:

Hail Mary, full if grace! The Lord is with thee; blessed are you among women, and blessed is the fruit of your womb, Jesus. Holy Mary, mother of God, pray for us sinners, now and at the hour of our death. Amen.

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.

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. 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.

St. Gerard;

Who, like the savior, loved children so tenderly and by your prayers freed many from disease and even death, listen to us who are pleading for our sick child we thank God for the great gift of our son and ask him to restore him to health if such be his holy will.  This favor, we beg of you through your love for all children and mothers. Amen.

St. Peregrine;

O God, who gave to St. Peregrine an angel for his companion, the mother of God for his teacher, and Jesus for the physician of his malady: grant, we beseech Thee, through his merits, that we may on earth intensely love our holy angel, the Blessed Virgin, and our Savior, and in heaven bless them forever. Grant that we receive the favor for which we now petition. Through the same Christ our Lord. Amen

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 to do 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

Holy Michael:

Holy Michael, the Archangel, Defend us in battle. Be our safeguard against the wickedness and snares of the devil. May God rebuke him, we humbly pray; and do you, O Prince of the heavenly host, by the power of God cast into hell Satan and all the evil spirits who wander through the world seeking the ruin of souls.  Amen.

2020 08 14

Day 9 Status: 

Alex is still in a very deep sleep. Many of the emergency medications have been taken away (which is a good sign). He has several IV lines providing him with sedation, pain relief, antibiotic and fluids. He has a respirator that is providing his oxygen. His vital signs and the eeg (The equipment that monitor his brain) are somewhat stable most of the time. (Alex likes to throw us off guard so he makes all of the machines and alarms go buzz, beep and ding pretty darned often). The vital signs and the monitors show that his brain is begining to wake up, at this time the doctors believe that it is best that he remain at rest and recover a little longer before starling or waking himself up too quickly. 

Alex has not yet opened his eyes and he still does not squeeze our finger nor wiggle his toes. (He did a very little of that on last Thursday night...8 days ago) We know that he is in deep sleep right now (in part) due to the sedation medicine. Today they will continue to monitor many of his vital signs, eeg (brain activity), his fluid input and output. They will make a 3rd attempt at inserting an NJ tube. The NJ tube is yet another tube that would go into his body. This one would go in through the nose. This tube is important to start getting nutrition to the appropriate place. Nutrition to a place where it is safe to be when he starts to wake up. This is all tricky because they want to bi pass the stomach so that if he startles or has gag reflex when he wakes up, they want to make every attempt to keep him from throwing up. He currently has an oxygen tube in his mouth and down his airway, so vomit would have nowhere to escape his body and could end up in his lungs (we need to avoid that). So far he has been taking forced medications and clear IVs only (the ivs have what he needed for the past week, but he needs to start getting different nutrition). 

Today we hope for another step in the right direction. Every member of the several teams that are working with Alex appear to take every caution, and take every direction toward making the appropriate change for his improvement. The majority of them present themselves as strong and confident in what they are doing (especially the bedside nurses that touch every single machine, button, wire, iv line, medication, band aid, for what is truly an exhausting nonstop 12 hours at a time)  to make him stable. 

All of these professionals present themselves as strong and courageous which give us faith and hope.  

We know Alex can do this we have that faith! We know Alex can do his part... 

We see and want to believe that all of the professionals around him are doing their part which then gives us hope. 

We look forward to a better day today. We have faith in a better day today. 

Prayer and energies: 

Hebrews 11:1 "Now faith is confidence in what we hope for and assurance about what we do not see" 

Proverbs 3: 5-6 Trust in the Lord with all your heart and lean not on your own understanding; In all your ways submit to him and he will make your paths straight. 

John; 12. Jesus said, "I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life." 

Cycling analogy. 

We are somewhere in the first couple miles of this ride. The adrenaline is pumping and the mind is in that brain foggy blur with deep down question of "what the hell is going on?" It is like that early raw morning where the suns not up, we are cold and our body still has those uncontrollable trembles. We have not yet woken up, but we are here. We have never ridden in this darkness nor this kind of weather before.....it is the darkest of mornings and it has the thickest, densest fog that we have ever encountered.  We cant see the road and we are in that uncomfortable zone where we don't know whether our bodies or the weather will warm us. We truly don't know what the day ahead will bring. We weren't given a map nor do we know the terrain, so we can only take the challenge when it presents itself.  We are most thankful that we clipped in...this we know..  We can pedal... it is still dark...it is still foggy...it is still pretty damned cold...but we can pedal. We have faith, we have trust and we have confidence. We are strong. We look ahead but can truly only see inches above the front wheel.  Its pretty damned dark...we cant see...but We confide and trust God to help us take, accept, and come out of each upcoming straight and each upcoming turn safely. We have that faith and we trust because we know that with each turn we truly do get closer to that time on the clock where the sun will have to rise...the fog will have to lift and then we know that we will be able to see.

2020 08 13

2020 08 13

Status...

Over night Alex showed slightly active signs of a waking brain (which is a good thing) via 1. the eeg, 2. bloodwork 3.fluid results, 4. his 4 bedside monitors and 5. his pupils. He presented a pretty strong defensive reaction when they attempted to clear his respiratory line into his lungs.  He is in a very very deep sleep, therefore no reaction in terms of squeezing my finger nor opening his eyes.  We wait and are told that it may be a few days more...so we wait. 

We will have another catscan this morning they are closely monitor the swelling of the brain and want to see reduction. They also do these tests to assure that there is progress and not the opposite.

The Doctors are going to medicate him a little more (as planned) so that he may continue to rest and not place necessary stress on his brain. As a parent, family member, friend we all want him to recover and to recover fast, unfortunately the best for Alex at this moment is a slow steady recovery.

Prayers and energies...

We thank all of our families and friends who have been praying for and speaking to Alex.   We know that our souls can hear...therefore we believe Alex is listening to you all from deep down inside...we strongly believe that Alex can sense and hear each and everyone of you.  We see and  believe that all of our prayers as individuals are working as a whole.  I pray. I send the words into the winds so that the words may be carried far and wide.  Knowing that that all of you are doing the same assures Alex that the prayers are traveling far and wide for God to hear. Far and wide so that all of the angels and saints may hear and pass forward...project...reiterate the prayers to our God.   The positive thoughts and energies and energies are well received, We are in a tough spot but are reminded of and clearly see that there truly is progress.

Psalm 27: The Lord is my light and salvation...whom shall i fear?  The Lord is the stronghold of my life...of whom shall I be afraid? For in the day of trouble he will keep me safe in his dwelling; he will hide me in the shelter of his sacred tent and set me high up upon the rock. Hear my voice when I call, Lord; be merciful and answer me.  I remain confident of this: I will see the goodness of the Lord in the land of the living.   

Wait for the Lord; be strong and take heart and wait for the Lord.

My cycling analogy:

(as i currently see it and try to make sense of this all)

We are getting ready to ride the distance of a dozen centuries all at once and all consistent (that we truly didnt train for). We clipped in, we started pedalling for the last several hours..  but at too fast of a pace The coaches all just reminded us to slow down. The Coaches said hit the porta potty, adjust the bike shorts. stretch, take a sip of water, and maybe grab a little more gu so that when the route starts to climb again we can be rested and a little stronger as a whole.

I will make attempts to update here daily. Alexs bedside is a little busy so responding to all of the texts is overwhelming and impossible at the time. Please do not hesitate to text and let us know that you are sending prayers, positive thoughts?, positive energies, etc...but please forgive us if we do not respond.  We hear. We appreciate and please keep it coming.