2020 10 24 Rehab

2020 10 24 Saturday. 

This was first day of rehabilitation. We were able to meet the weekend crew and get a little familiar with a few doctors, nurses, and therapists. We were able to start getting a little familiar with what to expect and what is expected of us.  As of this day one we have a feeling that this team work is going to work.

This morning during parent speach session, Mom was able to have him say 3 words. While reading a book in bed he said "anguin" for penguin. He said "roar" for the lion. He said "efant" for elephant.

During the day we met several therapists and then Alex and I were able to work toward a goal.

We have left a long road behind us. The road was bumpy, broken, dark, foggy, and just outright miserable at times. We went through several deep, dark tunnels where we definitely didnt see the light at the end of the tunnel. When in those dark tunnels, we were on a track..a shitty track..we couldnt see the light...the tracks jerked us from side to side and almost tossed us all off several times. We stayed on the track with faith that because the track was laid...there had to at some point be a light and an end to that damned dark tunnel. We know that we still have a long road ahead of us. There are steps to be taken and work to be done and we are ready

2020 10 23 rehab

 2020 10 23 Friday

Morning Boston childrens Hospital

Afternoon Spaulding Rehabilitation

Alex has transitioned again between Boston Childrens Hospital and a rehabilitation facility.

We are on day seventy something and have a long road ahead of us for recovery. We continue to adjust medicines and feeding in order to get him up early and keep him awake long enough to participate in therapy sessions.

As of this morning Alex is able to sit for a while unassisted. If he sits for to long, he loses strength and leans over. He us able to stand up about ten times for 10 second each time three times a day. After the stands he is exhausted and needs a break. He is able to show signs that he will be able to grab and release objects. He hasn't spoken other than a few times of saying "E Pa" three times.  We are in rehabilitation and we will work on adjusting seizure meds ( he is currently have 7 to 12 a day). We work on preparing him to get back to sitting, standing, walking, talking.  He isn't yet focused, we don't know what he sees. He turns his head sometimes, but not certain of how clear his vision is. Every medicine that he is on have side effects. Many of the medicines cause issue to his vision. We don't know if his vision is impaired from surgery, trauma, stroke, infection, or medicine, right now only time and medicinal adjustments will help answer those questions.

We left the Boston Childrens Hospital behind us, we will return for follow up exams in the next couple of weeks before we know how to proceed with infection and seizure medications. Today we are in a rehab facility, this is where we need to get our walk, talk and grip on... We have a long road....but this looks like the place to be!

Writing from the first night.

I lay on a couch about ten feet from my sleeping child.  It is something after ten and I can hear the quiet ticking of the wall clock about fifteen feet away. I have a ringing in my ears from the past seventy something days of hospital noise, this silence allows me to realize that there is a ringing that I didnt know existed. Its almost like that sound we hear after a rock concert. Well, it is not quite that....but there is ringing. I am ten feet away. I can see my son, nothing blocks my vision, no wires, no IV lines, no respirator, no eeg lines, no machines. It is quiet. I can hear my son breathing. I can hear him breathing...I haven't heard that sound for over seventy days. In this recent past, it has been mechanical systems, machines, pumps, alarms, dings, beeps, etc.

In the present, It is quiet, It is peaceful, this looks and sounds like the right place for our recovery.

There are only 12 kids on this floor in therapy at a time. It is very quiet during sleep time and it is pretty busy during the hours where kids do thier therapies.

Alexs room overlooks the Charlestown Naval Yard and the Boston Harbor.

He is able to watch a lot of boats coming in and out, we see the tug boats in and out of port but can not hear a thing.

Alexs room door is wide open and there have been no sounds from the hall in over 20 minutes. There have been no alarms, no dings, no codes called over the intercoms. There is no evidence of nurse chatter and no consistent shuffling of feet nor babies crying.  If the sounds exist, we have not heard them.

Covid rules have me quarantined with Alex. We are here and we will be getting to work. For sanity we have a wonderful view of the harbor and the peacefulness of theses still waters. We watch as large boats drift in and out. We watch as smaller boats make the ripples that disrupt the peaceful waters. Below our room is a playground. We watch the kids play from our window. It looks fun from behind this window that ia 8 floors up. From behind this window we look out and pray for the day that we may be out there looking in.

2020 10 19

2020 10 19 Day 76

"The habit of persistence is the habit of victory" anonymous.

We keep at it, we do not give up. Things aren't easy today....but we believe that what we do today will give us a better, stronger tomorrow.

.
"Don't count the days....make the days count." Muhammad Ali

Ive been keeping track of the daily activity while noting the progress, is that wrong?. We need to get that grip, focus on the work and get into making these days count..every hour, every day is critical and we need to focus on it all. We have meds, feeds and rehab and we need to make them all work. We have a daily to do list written with dry erase board marker on brown paper towels.  It is on the door, we cant miss it. Is that considered making the days count?

2020 10 19 Alex Status

2020 10 19 Day 76

We are currently on day seventy something and haven't left the hospital for the final rehabilitation facility yet. We left our home, families, friends, business, work and chores behind seventy something days ago. 

We miss being home and we truly miss our oldest son beyond words. I haven't written about my oldest son and how much I miss him, the hikes, the walk and talks, the fishing, the bbq on the deck, the frisbee tosses, the silly teasing that we throw at each other etc. Its been seventy something days of no old kid.  He is a big boy keeping the grandparents and house in check. I respect his privacy and don't write about him here as much as I do in my daily journal. We are seventy something days in a hospital making the attempt to heal and strengthen his younger brother. Healing and strengthening his younger brother  is a tough task, especially when everything else going on in the world around us keeps us from being together as a family or even seeing the family.

We are still at Boston Childrens. On a good note, we are daily increasing in strength and working toward a better Alex. On a good note Alex is stable. On a bad note he is not stable enough to go far, we have I.V. meds for another four or five weeks. We need to be close enough to this hospital as his infections are not yet cleared and fevers may arise at any time. We will need another mri in four weeks and maybe an eeg as soon as five or six weeks. We need to travel to and from but Alex is still imobile which makes travel so much more difficult.

Alex is currently stable enough to move to the rehabilitation facility by ambulance where they can focus on getting him to sit, stand, walk, talk. He may be ready but his health insurance and the local rehabilitation facility do not agree with each other. They currently toss red tape around at a critical time where a child has need for prime time rehabilitation. This kid has gone through a lot. A major brain surgery, a stroke during that occured during, a life saving second surgery, a life saving third surgery, a reconstruction surgery, a trial rehabilitation at a local rehabilitation facility and an emergency revisit to Boston Childrens to treat two infections. The infection treatment is a five or six week dose via I.V..

The teams here at Boston Childrens have worked feverishly toward stabilizing Alex, they are adjusting Alexs medications so that he can work with therapy teams during the day.  The therapy teams here are awesome, but they tell us that we should move toward rehabilitation facilities that provide many more hours, more focus on rehabilitation recovery etc. We sit here now greatful to be stable, but upset that red tape and insurance companies hold a child in a place that he should be moving on from.

We want nothing more than to get our son better so that we can get home. It has been over seventy something days that we have been away from our normal and we haven't yet started a rehab that may take two months. Insurance company says it may take four to six weeks to come to an agreement between insurance and rehabilitation facility...how can this be???? These two have been in the process for two weeks already, how can this be a thing??? There are facilities, there are insurance companies, how can communication in 2020 require four to six weeks. In four to six weeks one can build a facility. I am not sure who else to get involved in this. If anyone has any ideas please comment below.

We have visited this Boston Hospital many many times over the past several years. We have come here for one hour doctor visits as well as two day three day or four day long visits to do eeg and video monitored testing. We have had times when we came up and stayed at a hotel for the one night before appointment because we had the early 8am or 9am appointment. We are a three hour drive with normal traffic and getting Alex up and out our door from a deep sleep is a very difficult task. To ease Alex's morning frustrations, we have come the night before an appointment. For longer stays, we have stayed at family housing where we have met other parents who told of thier long stays. As I heard the stories then, I felt so sorry for the child, the parents and the families. I could not imagine a week stay for us, yet we heard storys of people who moved to town to stay for several months.  Never, never, ever did I foresee that Alex and our family would be in that similar situation. 

I never guessed that a thin matress on a window sill or a hard surfaced plastic pull out couch would be my restful sleep space for months. I never knew how greatfull I would be for this here plastic pull out. A couple of weeks ago I was sitting on an ant infested half rotted wood wall, in the rain, wishing I could be by my kids side...so im lovin this here couch. Never did I know how important the simple, weak family room coffee, single pack cheerios, single wrapped graham crackers, raisin bread and single serving peanut butter pods would be. As a caregiving parent, things change. Almost everything changes. While I lay on his hospital bed by his side, he sleeps and I stare at the hospital room walls. I listen to youtube prayers while praying for a kid to focus, wake, talk, sit, stand, walk, laugh....I pray and I am reminded of how much we truly take for granted. We all take simple tasks like sitting, standing, laughing for granted.  I wonder if Alex is in pain when he sits or stands.  He can't speak so I don't know. We don't know.

We work with so many teams to try to figure this all out. It is a challenge, But we are making progress. This past weekend he sat on his own at the edge of the bed for several minutes. He was able to stand with assistance seven or eight times for three times a day. I am determined to get him to sit, stand, walk and use arms and legs. Mom is determined to get him to speak and focus on people, toys, books, etc.

We work with several teams, he is awake, as his parents we are learning about him as he wakes. Simple things take so long, simple things that we took for granted months ago are now so important and are the focus of our prayers today. How many mornings should I have thanked God for currently having the ability to sit and stand. I should have thanked God for having given us the ability to walk and talk. Kids jump and play right?  Well... as I walk through these hospital halls, I can sense the frustration of children and parents of children who can not. How many prays of desperation have these walls seen and heard over the years?

No matter how much someone tries to plan things out, things always seem to go a slightly different direction.  You can write a to do list daily, yet during your day something will go sideways and you will find that other things got done, but your list was not completed and sometimes not even touched.

Our to do list was try every medication and directive before surgery. We had surgery to correct something and things went sideways. Seventy something days later I sit bedside as he lays in bed. We have been away from our family and our normal for way to long.

After what we have been through and after the horrible, horrible, horrible words that doctors spoke in the extremely critical times...I am greatful that I am still here sitting bedside with him and that he is able to somewhat respond. Its been seventy something days, we are here, we are safe and surrounded by professionals, but we parents are tired and Alex appears ready to move along and get to rehabilitation.

Lord we pray for the right place and the right people at the right time...Lets get to moving forward however you see fit. Lord give me the strength to see this all through. Let me help without getting in the way. Let us give this kid back his legs arms and voice.  Lord the end goal here is to get Alex back to him.

2020 10 17 photos

2020 10 17

Photos of last 3 days.

Alex is a little more awake. Doctors have taken away medications that have allowed him the opportunity to be more awake. In being more awake he is starting to make attempts at eye focus, he is making attempts at standing and is sitting a little stronger for longer periods of time.  He is smiling more now that he has a wheel chair and the ability to leave the room. He enjoys seeing people im the hall. He reaches out to almost every nurse as if he wants to hold thier hand along the walk.  He loves loves loves holding mommy's hand as he is wheeled down the hallway.

Daily Alex and Dad selfie in empty hall with covid mask. We wanted to go up to the roof top garden but it was too sunny and breezy.

During our wheel chair stroll we saw these dragon wings painted on the wall. We had to stop and show our wings!!!!

Alex sat up in bed to give mom a hug.

2 Kings 20:5 "This is what the Lord, the God of your father David says; I have heard your prayer and have seen your tears: I will heal you. On the third day from now you will go up to the temple of the Lord.  I will add fifteen years to your life.

Alex is in good spirits. He is having a very hard time, but smiles and plows through the day with smiles along the way.

Sitting at the edge of the bed and finding his balance was very difficult on this past Monday and Tuesday. With hard work, determination and dedication Alex sat up about 7x Saturday unsupported for a few minutes at a time.

Psalm 6:2 have mercy on me lord, for I am faint; heal me Lord, for my bones are in agony.

No one would ever imagine how difficult it could be to sit up, unsupported at the edge of the bed.

"We need to get through this kid, you are doing awesome...this is really really hard but you are doing awesome!!!."

Little by little, one sitting at a time we will get there.

Isaiah 41:10 "so 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 hold you up with my right hand."

Today (Saturday) Alex stood up at the bedside with assistance. He made several attempts at standing and rocking me back and forth while hugging me. He stood about 10x...6 of them were pretty strong.

2020 10 13

 2020 10 13 Boston Childrens Day 70

Alex

Alex is still in Boston Childrens.  Doctors continue to adjust medications with hopes to keep his seizures under control while working toward reducing thier sedating effect. Doctors need to finetune all medication doses and scheduling so that sedating medications do not interfere with his daily therapies.

He is also currently on a pretty strong 6 week dose of antibiotics via iv) to address two infections. Alex is yet again making valiant efforts to stabilize and to start moving around. We finally saw the first signs of left leg movement. We have been pushing and waiting to see him move that left arm and left leg. Late last night as mom and I sat bedside, he lifted his left knee up a few times. We put his leg down flat, smacked his inner thigh to stimulate the area and within seconds he would bring his knee and leg up on a 2, 3, or 4 step motion, which to me could have been the most exciting leg dance that I have ever seen in my lifetime.

Today we say a morning prayer and thank God that he had an ok day and night yesterday. We pray that last nights sleep give him the peaceful rest that he needed. We pray that the rest gave him the energy required for todays upcoming physical and occupational therapies. He moved his leg late last night...a leg dance...

Prayer.

The Miracle of the Sun, also known as the Miracle of Fátima, is reported to have occurred on 13 October 1917, attended by a large crowd who had gathered in Fátima, Portugal, in response to a prophecy made by three shepherd children, Lúcia Santos and Francisco and Jacinta Martoq. People came and they while there witnessed the dancing of the sun.

Throughout my childhood my family and close knit community attended Our Lady of Fatima church. The parishioners pray for Marys intercession in thier petitions through masses, Candle light vigils, candle light processions, etc. In 1917 Mary appeared and asked that  we pray the rosary, in prayer asking the Lord to forgive our sins so that our prayers may be heard. It is said that is was crucial that we pray for lost souls.

"Dear Jesus have mercy on us. Save us from the fires of hell, lead all souls to heaven, especially those in most need of your mercy." Amen.

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 our sinners now and at the hour of our death. Amen.

2020 10 12

2020 10 12 Boston Childrens Day 69

James 5: 14-15

"Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. The prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven." 

Isaiah 41:10

"So do not fear for I am with you, do not be dismayed for I am you GOD. I will strengthen you and help you, I will hold you with my right hand."

Alex is currently still at Boston Childrens Hospital in process of recovering from a couple of infections. We had left the hospital a little over one week ago but had to return unexpectedly and in emergency.

Since last Saturday Alex was put through several tests mri, lumbar puncture, blood work, etc. He is seen by several teams of doctors.

We meet each of the teams at least once a day and sometimes 3x a day.

The dozen medications that Alex is currently on are adjusted almost daily in order to maximize the medicinal value while allowing for his therapies.  The balance seems to be a difficult one and is then an ever changing process.

Alex is recovering from this 10 day setback and today we prepare for the next step.  If you read back in blogs to "rehab im covid", we pray that we don't go back to the same type of situation.  Here he is currently stable, mom and I work as a team and he is slowly waking and reacting to both of us differently.

With the dozen medications that he is on....we were still unable to see the Alex that once was.  We (Bela and I and the teams) work feverishly and tirelessly to get him back. Meds make him very sleepy, we pray that after every restful sleep he wake a little closer to the little man that he once was.

2020 10 09

 2020 10 09

"The heartiest of plants survive because they weather the storms and never stop reaching for the light". Robert Clancy.

"When a train goes througb a tunnel and it gets cold and dark, you dont tear up the ticket and jump off. You sit and you wait and you trust that soon enough you will see that light at the end of the tunnel" unknown.

-Alex is currently recovering from an infection. Today (Friday) we can recognize him.  On Monday and Tuesday his eyes and right side of his forehead were so swollen that he wasn't able to open either eye, nor could mom and I recognize him.

For the past thirty something days Alex has been frustrated with not yet being able to sit, stand, move his left arm nor leg, nor speak his mind.

- Last night he may have had one or two hours if sleep. This poor little guy is having a hard time. He is "strong like bull" to put up with it all. We are still uncertain of what keeps him up, what aggravates him, etc.

We think that maybe it is because of the ten medicines that he is currently on or it may be because of the hook ups.

He is currently hooked up to three heart rate lines on his chest, the oxygen sensor on his left toe, the intervenius lines in his right arm and the blood pressure cuff on his left arm. Alex needs to get better so that things can be reduced, so wires can come off, so cuffs don't press.

-Today Alex Looks better than he did yesterday. We pray that the two heavy duty antibiotics that he is currently on are working the inside as well as they look like they are working on the outside.

-today Alex has an MRI in the afternoon to confirm what the antibiotics are doing.  We will sit anxiously in a waiting area while the mri is in session and then we will await anxiously on mri results as well as  the results for a plethora of blood draws.

- Alex didnt sleep through the night, so we let him sleep through his three therapy sessions this morning. We do this because he cant be fed until the test is over. We are scheduled for four pm which means that we may only get to testing late night.

-We sit, wait and pray that MRI results show healing in the positive direction.

Alex and I at thirteen

Forty something years ago I prayed..."Lord let whoever I ask to dance say yes and please let the dance be one of those Jorge Ferriera rhapsodies that lasts forever."

"Music is a therapy. It is communication far more powerful than words, far more immediate. Far more efficient."            Yahudi Manuhin.

"Music has healing power. It has ability to take people out of themselves for a few hours." Elton John.

"Music moves people. It connects people in ways that no other medium can. It pulls heart strings.It acts as medicine."  Maclemore.

"Music is life....that's why hearts have beats."

At thirteen I was in seventh or eighth grade. I was fortunate to have my sister Filomena who advocated for me and had me in a catholic school in the hollow. In school I was about 7 miles from home but 1 block from my brother Tonys restaurant, 3 blocks from Fernandos Travel agency and two blocks from Columbus School the school where my sister was a teacher.

I felt far from home, but was always close to everyone.

At thirteen I would walk from school to Tonys restaurant on Thursday and Friday nights.  The place would be busy and I would help out by washing dishes 4pm to 10pm. It wasn't easy but I didn't mind it. It was an interesting environment to say the least. The point here...I was thirteen and washing dishes till 10pm. My brother would give me all the tips, so that made me very happy. I was thirteen and making ching!!!. I was excited, I felt accomplished and was surrounded by adults with interesting point of views.

I was thirteen, I liked school and the pretty girls, at thirteen I was preparing for confirmation. At thirteen Tony let me drive the balleeenyas around the Columbus school parking lot across the street  from the restaurant when things were slow. The balleeenyas was an old beat up volkswagen beetle with the heart and mind of its own...almost like herby the love bug. There were a few of the love bugs in my family. My sisters was the newest, the cleanest, but I didnt get to drive that one until I was fifteen.

At thirteen I had those school boy crushes on girls that shall remain nameless. Some were neighbors, some family friends and others were girls that I met in church. At thirteen the Portuguese community was tight. The church had festivals, the Portuguese club had festivals and Omanel restaraunt had social dances every Sunday night from seven to midnight. My brother Tony was very social. My brother Tony worked hard when he had to, but he partied pretty damned hard as well. He loved to fish, he loved his boat, and he attended every festival, picnic and Sunday night dance.  Tony often asked if I wanted to go. At thirteen, the last thing I wanted to do was stay home. I was so fortunate to have supporting family and to have him and my brother Alcides to take me fishing, boating, to the parks, sledding, etc.  At thirteen I looked forward to washing dishes on Thursday and Friday.  Working gave me tips and the opportunity to hang with my brother. Washing dishes gave me leverage.  I would work late Thursday and Friday and then would beg my mom and dad to let me go to the dances on Sunday night.  The dances were in a small hall, there was a small bar in the back and the room was filled with the community families and friends. Local bands would play portuguese music and couples would dance. At thirteen I was excited, My sister Filomena would always take me to orher types of dances such as fundraising dinner dances that she and her husband Fernando were part of. She always took the time and made a point to get me on the dance floor. She and I would dance, as a beginner i would lead us in bumping into other couples through out the night, but it was ok, we were all community. I probably gave her black and blue toes and I probably wrecked a dozen of her expensive shoes, but she never said a word. At thirteen she had built up my confidence on the dance floor. During these fundraisers and festivals or picnics there were dinners and then dancing.  Directly after dinner the bands would start, at the same time all of the macho men rushed to the bar for espresso and after dinner alcohol. At thirteen my ass was left behind at the table listening to the band. I will never forget the first time I got a tap on the shoulder from one of my sisters friends hey lets dance....uhm ok. I learned pretty quickly to make sure I was the lonely thirteen year old at my sisters table, that got me the dances....

It was culture, it was community, it was family, it was nerve racking as a boy to come out of a shell, but it all made a person, it gave a kid confidence. So at thirteen, I looked forward to the dances, the music, I was as shy as every other thirteen or fourteen year old kid, but I prayed to God during the week for my crushes to be at the dances with thier parents. My prayers didn't always come true, but when they did, I couldnt always find the courage to ask until the last dance. I would go home upset, beat myself up mentally with the "oh man...why didnt I try a little harder to get that dance????"

I was thirteen then, Omanel and the Sunday night dances were the place to be. I loved the music and every other Sunday when Tony had his night off work...I had the opportunity to try my courage at dancing yet again. I was thirteen and Jorge Ferriera was going to be the band on one of those Sunday nights. I could remember the smoke filled room, the smell of seagrams seven that was soaked into the carpets and the body odor of the dumb ass porkchops that didnt believe in deodorant. The minute you walk into the hall you feel the body heat, you smell the smells and you knew right there and then that tomorrow morning your clothes were going to wreek of tobacco.   I recall the table and the surprise to see that there were girls similar to my age at the table. I was so psyched...here I was at thirteen but thinking...some of these adults are gonna force us young peeps to dance together...bingo!!!! That night The band played and I could not care less about who was playing...you could have had bozo the clown playing polkas... It was guaranteed dance partners!!!  It just happened to be  Jorge Ferriera and he played. Jorge is famous for rapsodies and his songs go on for about twelve to fifteen minutes.  I was so psyched to have dance partners my age, one of which was my childhood crush that I had prayed the Lord would let me dance with. Anyway all of this work up of story and I can begin to get to the point.

I was thirteen. I was introduced to Jorge Ferriera, the smokey environment, the courage to get up and dance, the adrenaline, the sense of confidence and that music in the background that changed everything about how a thirteen year old looked at life. During the week this thirteen year olds simple life had me praying that I get a dance.  I worked as a thirteen year old, I had tip money in my pocket! At intermission Jorge Ferriera sold records, eight track tapes and cassettes. My sister had a record player at home and there was a cassette player at my brother Tony's dishwashing station so I took my tip money and like a big man bought a record and two cassettes.  On Thursdays and Fridays I would play those cassettes while I washed dishes while reliving that Sunday night where my prayer was answered and I danced.

I sit here bedside about forty years later. At thirteen my kids gone through a lot. I sit here bedside while he sleeps, with nothing more to do than plan for his tomorrow. Forty years ago I looked like him, I was his height, I was his build. At his age I had experiences that I am so so so sorry that he has not had.  I wish that he could have had the opportunities that I had.  He has opportunities, but not the same. I was his age and height driving a volkswagen around the Columbus school parking lot. I was his age and washing dishes and watching the chefs cook stuff up. I was his age forty something years and prayed that I would get to dance. The music didnt matter but there were several songs that seemed to be the hit.

Fast forward to Alex at thirteen. Alex loves to fish, he loves to ride his bike, he loves to kick the soccer ball, he loves Dora Dance and I think that I have forced him into loving Jorge Ferriera songs. When home our youtube is programed to play Jorge on repeat. Alex is excited about the music and he moves and grooves to it.  While here in the hospital he is lethargic His medications make him sleepy especially around physical therapy time. Several times through out therapy sessions the therapist put on easy listening guitar or acoustic guitar, that only makes him sleepy. I ask the therapist if they would mind my music...they shrugged thier shoulders...I put on Jorge and the kid sits right up!  This week Ive used Jorge ferrieras song "Tiro Lido" for arm therapies and the kid loves it and will work hard with it.  So I sit and think about how different we are, yet how similar. He works with the same exact music today that I worked with forty something years ago.  There is a religious song by Jorge "amar como Jesus amo"  that we sang at home and now sixty something days at the hospital, Ive sang it to him every night before he falls asleep. The songs pick him up and get him moving yet the songs calm him down give him peace and comfort and het him to sleep.

Forty something years ago I was thirteen exactly as Alex is here today. Forty something years ago I was in a smoke filled room trying to stand up, trying to gain enough courage to dance.  Forty something years ago I prayed for a dance partner, I wanted to dance. Today at Alexs bedside I see that he too did today what I did forty something years ago.  We had Jorge playing from the cellphone in the background. He was still, he wouldn't get up, I turned up the volume, played one of Jorges rhapsodies and he sat right up! He sat up bedside and we made several attempts to stand, several attempts to get up and dance. We didnt get far, it was sloppy, but he had the courage to get up and do it. Alex and I are different at our own thirteens, but had he been given the same opportunities, how different would he really be? Today he was sooo much a mirror image. The same exact music, the same exact situation...needing the courage and finding the strength to get up and make that attempt to dance. Forty something years ago I prayed that the Lord allow me that opportunity to get a dance or two in. At my thirteen, I would have never ever guessed that forty years later I would be bedside praying that same prayer...Lord please let me have the courage, the strength to ask for a dance. Lord let whoever I ask to dance (then it was the pretty girls, now forty years later it is my lil man Alex) say yes and let the dance be one of those Jorge Ferriera rhapsodies that lasts forever.

 

2020 10 06 Alexs Eyes

2020 10 06

This morning Alex opened his eyes. Yesterday morning both eyes were swollen shut. On Saturday night Alex had an unfortunate bedtime diaper change incident where he bumped his eyebrow/ forehead on the siderail of the hospital bed. An emergency ride by ambulance brought him back to the emergency room at Boston Childrens.  Here we are again three days into this stay under going MRIs and LUmbar Puncture and blood draws to confirm that the insane amount of swelling to this poor kids head is only a bump and not also a bump with infection.  Alex is on all of his original nine medications (original since surgery) and now two new antibiotics and a probiotic.

Last night he didnt sleep well. He was taken off one seizure medication and maybe the lack if it caused issue.  He however was able to open both eyes this morning. At four am When I opened my eyes from the short nap I heard him laugh, I leaned over and saw the white ans brown and cried tears of joy.  This poor kid had his eyes swollen shut and was swinging at his pillows with aggravation and frustration. I cant even imagine what was going through this poor kids mind. All the pain from the surgery, the inability to move, the inability to speak and now here he finds himself laid out flat and unable to see???? OMG!!!!!!  WTF???? 

How do I gain this kids trust again? Every day I wake and tell him that today is going to be a good day. Every day I go through the morning routine and tell him that everything is going to be alright..... This kid still holds my hand as if he is comforting me.  When things are about to happen he grabs my hand and I am blessed to have him do so. A few weeks ago he xouldnt grab anything. When he is about to be pinched bu a needle or touched by a nurse he turns, he tries to bury his head in the pillows. i tell him things are going to be alright and he straightens out. He trusts me. I am heart broken when so much uncontrollable crap happens. I hold his hand everynight before he goes to sleep. I tell him that tommorow will be a better day. Tonight he squeezes my hand. He squeezes tight as if to tell me he is alright, he slips his fingers under mine for the secret handshake and snaps as if to tell me that it is all good. We are all good.  We promise that things are going to be ok and we secret hand shake to seal the deal. This isnt good, this has been a roller coaster nightmare from hell, yet this kid can slip his little hands under mine to give me that secret handshake that lets me know that we still have a deal.  

2020 10 06 Ambulances

Eds Note Saturday October 3.

My intent was to leave quick enough to to get the parking lot sooner. It was late, it was dark, it was much colder now than it was only three hours ago. The outdoor temperature may have been the same, but my body felt and sensed it as if it were much cooler. I drove off and trusted that the dashboard gps would get me to where I needed to go. As the lady with the british accent spoke, I heard but couldnt always comprehend. I am tired, i am frustrated, nervous and annoyed. I take the next right sooner that the one thousand feet that the British lady had just mentioned. The GPS recalculates and I am back on route. As I sit at the red light I realize that the tips of my fingers are cold. I grip the steering wheel so hard that I stop the circulation to my finger tips. I loosen up and let the blood flow. I take a deep breadth and tell myself that this too shall pass.

A few lights later an ambulance approaches from behind me. I hate the sounds of the ambulances sirens.  

I flash back to when I was 13 years old, sitting behind a desk at St. Raphaels school. The smell of stale milk in the classroom because they didnt have a cafeteria and that strange smell of friday afternoons sweaty uniforms. Monday the class smelled like bleach and the kids smelled like various fabric softeners, friday the class smelled like stale milk and sweaty 13 year old body odor. Sitting behind our desk Sister Barbara, in her full head to toe dark black habit (that almost simulated the same scent schedule) would have us stand and say a prayer for the patient and the families as soon as we heard the ambulance sirens on the roads outside of our classrooms.  Ever since those classroom days, everytime that I hear a siren, I almost smell the milk and n.o. and I say a prayer.  i flash back to the times that I called the ambulance fir my father. I was young. I was nervous. I would call 911 with a tremble in my voice and my entire body would shiver uncontrollably. Ive ridden in several  with my father when he had strokes or heart attacks. I was scared then,  I was uncertain of the outcome and would just sit and pray. I hate the sound of sirens, even so, when I hear one...it brings back the memories and I can almost feel what the caregivers feel and so I say that prayer.

Sitting at the light, the sirens and lights get closer. I pull to the side and grip the steering wheel tighter than before. Im gripping the wheel so hard again that my finger tips are cold, Im clenching my teeth so hard that my jaw hurts. I ask the Lord to help who is in it and the family...how friggin Ironic.  The ambulance passes me on the left and I swallowed what I had, clenched my teeth and tried unsuccessfully to hold back a tear. I held back the rest of my tears because I still had to drive. The light remained red, the siren and the flashing lights disappeared slowly into the distance.  Here I am again, Im sitting in this car, at a red light as my kid gets further and further away from me.  Im so frustrated, annoyed, Lord......why?....one step forward and three steps back.  Lord, everything happens for a reason...right now I am confused.

Light changes and I make my way to the Boston Childrens Hospital parking structure. Mom is with Alex and must be a nervous wreck, which goes without saying. I am a wreck both inside and out but need to wipe my face off take a deep breadth and get into this emergency department.

Things just straight out SUCK. This little man has been at this for several months. It is enough already.

Bela and I are tired, Bela and I are on this crazy emotional roller coaster of happy...sad...annoyed...ok...happy... Really happy and then pissed.... aggravated ...etc.  I pray, we pray, we read comments and your supportive texts. We dont call because the tremble in our voice or our vulgarity of the moment may not be appropriate for conversation. We find support in what ever sign or reading or youtube video from different priests, pastors, motivational speakers etc. That we receive from you all.  We took a few steps forward and then again a few steps back. Everything happens for a reason...Lord....fix this.

Today as I sit in the vehicle wiping the tears from my eyes, I semi pray.  I semi pray because my anxieties dont let me focus on the words.  Im sitting in the car staring at the wall of the parking lot.  I recall a quote from....John Wayne.... I dont know why, but it is what comes to mind... "courage is being scared to death but saddling up anyway". Im scared about this situation, I dont want to walk through those doors again under these circumstances,  but no matter what I need to wipe off, toughen up and get in there. (I think john wayne kept a flask in his pocket for help...i dont right now...) I need to get in there hold the kid, move the kid, talk medicines, talk stuff and sit by this kids side yet again until he gets thru this.

Here we go again.

2020 10 05 Back to Boston Childrens Hospital

2020 10 05 Back to the Hospital

Alex was doing well Saturday Morning (I wrote about it in the last blog) and afternoon. Dad and mom switch for covid regs. He had a decent afternoon for mom.  Alex was working with mom on grip and grab, some OT, etc. 

Saturday night something happened and Alex now had a swollen right eye and forehead.  After nurse conferencing, after conferencing with all doctors up the ranks...We (mom and I...one of us on phone) requested that we move quickly and get Alex to Boston Childrens.  It didn't seem to sink into the team fast enough. I made clear that this was dangerous and dire and we needed to move asap.  At about 1030pm Alex was being transported by ambulance to Boston Childrens where we remain today Tuesday October 6th.  

Alex left eye is swollen shut and his right eye has swelling that changes through out the day. It is worse, then gets better, then fever spikes and then he feels crappy.  Alex has been looking horrible with the eye swollen shut and forehead swollen.  Alex is looking upset, angry and just rolls into a ball everytime a nurse comes near him. I don't blame him.

The Saturday night situation or episode may have caused a spiraling effect, but doctors are still confused and uncertain of what is going on. Maybe trauma bruise and maybe infection, so they are undergoing mri scans. Bloodwork. Spinal tap. Etc.  He is on fever reducing meds to keep him cool and he is on several antibiotics yet again just in case there are infections that are causing this swelling.

Lord. Our child has gone through so much in the past sixty something days. Thank you for the few days last weekend when Alex showed us his strength to begin recovery.  Give us that little man back. I sit in the corner of a hospital room watching my child as he lay yet again in a hospital bed.  Why Lord do you only allow us enough to get a few steps forward before we get sent several steps back? Why Lord do we fear you? Respect you? Pray to you for healing?  ask of you favors? ask that you pitty us? Beg that you forgive us? Request that you heal us?  Last week I asked that my family be together...here I am in a hospital emergency room with Alex and his mom.....this isnt what I meant...but it seams to me Lord that life for little man isnt fair right now.  Lord I am tired! Lord I am almost exhausted to the point that I just may not have the energy to pray....I beg you.  All who love and support Alex ask that you heal this boy. We ask that you you show us the healing and speedy recovery for this boy that we have beem praying for so that he and his family may rest through the night and have the strength to pray for others in need while rejoicing and praising you Lord for his healing. 

2020 10 03 week review

 2020 10 03 Saturday Franciscans Day 5.

The photo is of today ... Saturday ... Day 5 of rehabilitation. The photo was taken by a hospital worker walking down the hall collecting the bags of used covid required gowns. It looked as if he pushed the button to take several photos. What It looked like and what truly happened were not the same. There was only one picture for what seemed to be a three minute event.

The photo however captures the true feeling of the place.  It is somewhat foggy and blurry, everything around us is blurry and almost colorless or colorblah. It is lonely. The two of us are here but we cant even see each other through these damned masks. I see myself here adjusting his mask, making sure it covers his nose so that tommorow they allow us in the hall again. When I was young my dads car didnt have seat belts. Alexs older brothers Dad "Ed" had seatbelts in his....now Alexs Dad "Ed" needs to have seat belts, a box of face masks, hand sanitizer, disinfectant wipes and a box of latex gloves at all times...

I cant imagine what Jordans kids will witness.

Tuesday:

we were transfered by ambulance type vehicle to Franciscans for Rehabilitation.

Alex needs rehabilitation in order get all of his functions back.

as of Monday he is unable to sit, stand, move his left arm or leg, Walk, talk, nor focus.  He began to show signs of it all, but has not had the strength nor ability to do any of it alone.

We spent Tuesday settling in. We spent Tuesday in the shock of change and in the shock of the place that we have just entered into.

We came from state of the art facilities and are now in a building that is definitely "not". We do our best to put place aside and focus on the people and the teams.  It is extremely tough to do though...but we need to see what these teams are about.. We pray that it is all about the people here....because the building definitely needs help.

Wednesday:

We met all the teams. Bela meets half, I meet the other have. The goals are promising

..we hope to work hard and get things done. Alex is stable, he is hot and sweaty which is a big big problem, but he lays on the bed hoping that mom and dad have made the right decision in coming here. While here the goals are to fine tune his feeding, reduce his medicines, transfer all foods and medicines from J to G to finally some real meals that can be chewed and swallowed, and all types of therapies. The goal is to see him walk, kick, throw and ride his bike again. The goal is to hear him talk amd sing again. Wednesday was all about getting to know Alex.

His stiching is still not healed, they think a month or two, we cover every now and then because he scratches at them.

Thursday:

Alex worked with Dad and the PT and the OT. We made the attempt at getting him comfortable with them. With me Alex sat bedside several times. He looked like he was in pain and he hit the pillow really hard with his right hand. I think that Alex is showing his aggression by hitting the pillow. Alex ia not yet talking but he is laughing at mom amd silly stuff that I do. The therapies are starting slow with intent to progress as time goes. Currently Alex is being a hard ass and stuffs his head in the pillows when he sees the therapists coming.

Friday.

Last night was tough. The walls are paper thon and we can hear everything around us. Alex woke several times through the night. He is medicated and tube fed throughout the day and night, so nurses come in and out of his space often.  We have a schedule and a weekly plan of reducing and eliminating medicines and reducing and shifting feeding so that we can get closer to normal.  Today Alex had PT and OT with the therapists. I stayed back to see if they would succeed alone, but they are not there yet. Alex gave them all a hard time and didnt want to cooperate.

Im the afternoon the therapists brough a wheel chair and took him for a ride. Bela and Alex shared some laughs up and down the hall.

Alex was happy in the afternoon and toward the evening. He and mom had a successful afternoon.  By the time that I got to Alex at 830pm he had his night medication and was ready for sleep. I was able to get him to laugh at a few toys and play a few sillys before he fell asleep.

Saturday.

It was a good morning. Alex woke up less cranky than yesterday. We increased feeding and he seems to be tolerating it.

We had our routine morning "Portuguese Shower" (bedside towel wash). We brushed our teeth and put Jorge Ferieras "Tiro Liro" on the cell phone and got to bedside stretching. We worked OT

..the arms and hands, lifting, hitting, touching our nose and grasping with both hands. We worked these for about 1 hour 15 minutes...with the music he didnt even know.

After OT he had his noon medication that puts him to sleep for an hour. Once awake...i stretched his legs a little, sat him up bedside 3x for a few minutes at a time with lay down breaks in between. We attempted several hugs and then 3x standing hug for about 15 seconds each time. The standing works him so hard that his legs shake and he looks uncomfortable.

After about half hour of hard work he was able to get pushed around in his wheel chair.  He was all happy until he had to put the mask on. Learning is tough...changes suck...learning or relearning in a changed or different environment sucks even more.

2020 10 02 Covid and Invisible Walls

 2020 10 02 Friday Franciscans Day 4

Our lives during Covid Rules and Regulations. The invisible walls

Note from Friday Evening.

I have a knot on my stomach. I want and need to sleep but the anxieties dont allow for the restful, peaceful sleep that one needs. I have a knot in my stomach. I want and need to eat but my teeth clench down so hard that they wont allow me to.

Google maps says that there are dozens of places to eat near me, but I lay here in the back of Belas car and have no desire to take a step in any direction other than the direction that leads me to my kids bedside. Unfortunately I cant (by law) take those steps yet because its not yet my turn (I count the hours before I can relieve Bela). I have several bags full of snacks, microwavable meals, water, coffee, tea and sports drinks, but no desire to have any of it...I usually enjoy food, real food of course...not the kind of food that I can pull from a target bag, but right now I have no desire to eat nor drink. I know that I have to, and I will force myself to, but I have no desire to. It is not for lack of having stuff...it is lack of having the desire.  I lay in the back of this car as if I am homeless, but I am not... I am very far from it. Materialistically I have everything that I need and too much more. I lay in the back of this car as if I am alone, but I am not...I have a huge loving family and a very large circle of friends that are at my side in spirit and would be at my side in person at the drop of a hat. I am blessed. I am. Very very blessed to have all that I have. I am blessed to have the love and the support of so many. I am so blessed to have all of the stuff...but all of it right now feels so useless.  What good is all the "stuff"?  What good is all of my cool, solid stuff when these invisible walls keep me from holding my childs hand or receiving that hug that at the same time is his physical therapy homework for sitting and standing ...but he doesnt know it.  At this moment none of the stuff nor family nor friends can change the situation that I and my family are in.. Stuff is useless...friends and family however keep my hopes up and encourage me, lift me, keep me focused on the long term picture...yet the Invisible walls continue to keep me from being by my kids side to help and see him progress. We currently have these invisible walls set in place by the very important covid 19 CDC guidelines.I inderstand the rules, the regulations, the guidelines....they kist now make a truly truly fucked up situation so so so much worse.  We have a health situation. My sons health is in need of medicine, physical therapy, occupational therapy, speech therapy, music therapy, professional care and most of all the love and the support of his mom, his dad, his brother, and family. Currently the rules say only 1 parent at a time and we can swap out 1x im the day. Only one parent can stay the night. We can have all types of cleaning crew, doctors, nurses, janitors, etc. But 2 parents cant be in the building at the same time. If moms in the room, Dads out in the parking lot and vice versa.  It is such a tough time. I can handle Alex physically and his mom can handle him mentally. I could get him to work and cooperate, but moms the one with all the book smart degrees in all the schooling and special needs stuff.  At all tomes now, one of us is stuck in a room with Alex independently, frustrated about how to help our child because the other cant be there at the same time to assist with normal day activities.  The simple activity of bathing my son who currently cant do it for himself is now daddy and some stranger nurse who hides behind mask, goggles and full body gowns. This was a mom and dad thing, yet "from here on out" during this "forced stay", my autistic, special needs son, who just had traumatic brain injury due to unforseen, unpredicted issues in surgery and that was in a medically induced comma for well over thirty days, this is now how he will relearn life. He will begin to wake, he will again learn to sit, learn to walk, learn to talk, he will begin to see these walls that we are within as his new normal and this weird mommy and some face masked people or daddy and some face masked people will be this kids new normal. Well....in my mind, in my heart, in my soul. THIS BULLSHIT IS NOT NORMAL!!!!!!

They have psychologists on his team, the psychologists cant see that this goes against everything ever written?? studied?? researched??

I havent seen my sons soul nor charecter since before his surgery almost sixty something days ago. Today I lay in the back of a car (one of my stuff...so I guess that I miswrote earlier...this is one piece of materialism that is pretty damned important right now, if it wasnt for this car ide be sitting on the broken down rottwd wood, carpenter ant infested rail road tie wall with an umbrella unable to type this note on my phone because i need two thumbs to type, but one would be holding the umbrella). I lay here listening to the rain and praying harder than ever for my sons recovery, Im praying for his strength, praying for his courage. I need him to sit up, get up, walk, talk so that we can get out of this place. 

I mean no disrespect to this place. I mean no disrespect to the people here, and I want nothing more than for us to all succeed together as a team. But right now this fucking place is just so dark and so lonely...It doesnt have to be...but it is.

There is that saying that "home is where the heart is".  Anything or any place can be a house or a shelter. I am studied in Architecture and studied as an Architect. My business and  profession was to make the spaces...the spaces are all great if you have a healthy happy heart, a healthy happy family. Try this...sit at your dining room table with your happy family, eat drink, tell stories...feel the space? It is a happy space. Now sit in that dining room alone...sit in silence...feel the emptiness...that space means nothing without the healthy happy family to fill it. When the room is filled with family the colors are brighter. Pull the families apart and the colors seem to fade. 

I live for my boys. For me to be well, they need to be well.  If They dont eat? I dont eat. If they hurt, I hurt. If they laugh....I laugh...

We are in a place. Due to covid there are invisible barriers. Invisible walls, social distancing, these guidelines force the businesses to follow CDC guidelines. The people here state that only 1 parent can be with the child and that a visitor may visit but

Only once a day and when visitor comes the parent needs to leave the building. They state that never can 2 parents be in the same room at rhe same time. Mom and I need to share time, swap out when convenient and communicate through notes on a bulletin board or by phone.

Right now Alex needs to make this place a home. When he is happy, I am happy. He isnt doing well with all of the strangers that come at him with masks, goggles and safety gowns, he is a kid, a scared kid, a kid in pain and know all this adds visual fear and trauma.

Alex needs to get better. We need to make things work.  We are now pulling all stops and coming at this from every direction but need to wait. I lay here in this car, praying, begging for the answers that will make him what he needs to be.