Tuesday September 29
Franciscans Childrens Day 01.
We were discharged from Boston Childrens Hospital this morning 1030ish.
Alex arrived at Franciscans 1100ish.
For the past fifty something days, I either stood or sat by Alexs bedside to provide support, care, playtime, med time, change time, etc. On the wall I had my notes of when, what and how. For many normal people this may seem weird, awkward, like I am either ADHD or a straight up nut job. I kept these ever changing notes on long strips of paper towels. The paper towel notes consisted of medicine schedule, feeding schedule, sleep schedule and the three or four therapy schedules. These were all important. Each of the schedules impacted each and every one of the others, yet no doctor, team, nor nurse would ever figure, nor begin to figure it out without daily noting.
His medicines make him drowsy therefore the drowsiness drives his sleep schedule. His sleep schedule interferes with his occupational, physical and speech therapies.
The goal here is to maximize and to take full advantage of his awake time. The goal is to utilize his awake time for the therapies therefore scheduling them appropriately.
For the past twenty something days I kept these long paper towel lists, I've used them as a tool to talk with the teams every morning and during the day with the ever changing nursing staff. As a team we have made changes to medicines, their times thier doses etc. As a team we juggled scheduling of the therapies. We scheduled the time and the order of the therapies. We found with time and experience that less strenuous to most strenuous worked best.
Speech is less strenuous physically but most strenuous mentally and emotionally. Ot (occupational therapy) may be less strenuous than the p.t. (physical therapy).
Almost every morning mom and I listened to what the teams had to say. Mom and I don't always agree with doctors or teams and we both ask questions from different perspectives. Mom and I dont always agree with each other, but we always 100 percent of the time agrees that we do what we do and when we do for "what is best for Alex". It is teamwork between the doctors, nurses, therapists and parents. Both parents chiming in and coming to an agreement and a conclusion. This process of agreement is crucial, this process of agreement is important for Alexs health and for the sanity of a family that had a soccer ball kicking kid fifty something days ago.
Today that was stripped away from us. This morning we left Boston Childrens Hospital. Today we said...this is a new chapter, this is a new begining, today we start therapies in a new place. We are gonna get up and kick ass today.
We had a few issues with pick line dressing pain and Alex had notible anxieties about being transfered from his bed to the ambulance travel bed. Mom and I calmed him in our own way. We traveled out the door, hall, elevator and out the hospital back door entry / exit for the ambulance transport parking. Unbeknown to me, Once he crossed the threshold of that ambulance door....that would be the last time that mom, I and Alex could be in the same place together until Alex is discharged from rehabilitation. Uhm....what the hell just happened?
Bela and Alex were transported to Franciscan Childrens.
We considered it because of its name once we heard it, they have a chapel, we assumed that it had something to do with the Franciscan order, etc. Our insurance wouldnt cover the other options unless this option turned us down. Most importantly we chose to stay here due to the short distance to the hospital if ever required. Physicians mentioned that rhe building is older but the therapists are outstanding.
I take the long lonely walk to the parking structure, get my self out of it and mapquest my way to the Franciscan Childrens. Generic building, very blah, very sand toned brick from the seventees?, large, long half cylinder - laid flat bleeched over- the -years awning and confusing parking. The parking attendant seemed upset that I interrupted his lunch when i stopped to ask if I should park in visitor spots or long term spots. He answered while talking with his mouth full and Boston accent....so I understood almost nothing. I parked where I think I understood it to be and made my way to the building. Im in the building and go through covid screening. I explained 3x that I was dad to the "Alex" that was just transported and transfered here. They asked me a few more questions, took my temp, made me swap my mask and asked if someone was with Alex...I said yes...his mom. The oriental lady taking my info and aiming the thermometer gun at my head said "ok...wait outside until your wife calls you."
Uhm what? What outside? Family room? Waiting room?
she said "No...outside building."
Confused I asked "Uhm what? Like parking lot outside?"
She said...."yes."
Ok so lalalalala, confusion, "what? Huh? Ok....so I am Alexs dad. He was just transfered here. Im going to be living here until he is better, I dont understand what misunderstanding we just had but you are asking me to go back outside? No waiting room?"
The oriental lady got nervous and made a phone call, a security guard was soon by my side and then some lady came over and without introduction starts the conversation with..."mom is with Alex and the nurses, they are settling in and our policy is only one visitor at a time". I was confused and said "that sucks, That wasnt expressed prior and so what room do I sit in and wait in? She responded with "you need to leave the building".
That didnt go over very well in my stomach. Im currently writing this 3 hours later (after seeing Alex for a bit) I am writing this from a broken down... wood railroad tie wall in thier parking lot as it begins to rain.
I asked the lady to identify herself and she did, I told the lady that mom and I work as a team. I have Alexs schedules in my backpack. I have medicine schedules and doses, I have his schedule in writing that is crucial for all the nurses to be introduced to. Not only that..."we could not be transfered here yesterday because you don't have epidiolex, a medication that Alex is on. Do you have it today?"...I knew the answer... The answer was no...."the answer is no because it was delivered to me in the hospital yesterday and is all in my backpack". Im thinking in my mind...I am Alexs rescue, mom and I work together at this and they are shutting us out over redtape bullshit.
We have to figure this out. At this moment as I sit on this broken down, half rotted broken down wall in the parking lot, my first impression of this place isnt a great first impression. From building, to parking attendant, to the crew that put up a wall between family and son. We understand 1 parent per night (we have organized arrangements elsewhere for that). We were prepared for that, but we weren't prepared to break up Alexs team during the day. This isnt something that a non verbal child who just lost half his brain function, mobility, and almost his life with in the past 50 days needs to go through. This isnt something that his family should go through. We understand the Covid requirements, we get it, we abide by and agree. Ive been in quarantine in a hospital for over 50 days. I haven't left bedside other than to go to cafeteria for food. I left for 12 hours on the 12th of September and then right back to the bedside. I dont leave, mom brings food. Mom gives Dad a break and vice versa. This Covid reg now just kicked our ass. They have plans in place but they dont make sense. Ugh I have ten pages to vent on.
Prayer
We are here.. Lord... I believe in all things for a reason...we are here. I heard that this is the place for Alex to rehab and for Alex to get stronger.
Lord forgive me for the temper tantrum that I have just gone through. I ask that you bring Alex the right people at the right time.
The outcome that I want and beg for Lord is a strong walking, kicking, fishing, rock throwing and talking Alex. If this is the place let it be...I will make whatever sacrifice and make this here ant infested wood wall my home. I beg for his strength, his stamina and his recovery.
Our father. Hail Mary, Glory be.
Today is the feast of Holy Saint Michael the Arch Angel.
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.
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