Sam's Condition (just the bad stuff)

I had to write this for a social worker.  It was hard.  So I thought I'd post it, because it felt like a challenge like this should be memorialized - or something.  Either I'm just feeling sorry for myself or else I'm really proud of my ability to spell arcane medical words.

Sam Forsberg is a 29 year old boy with the mental capacity of about an 18 month old.  He is about 4 1/2 feet tall and, on a good day, weighs 80 pounds.  If he goes too much below 75 pounds he gets sick from being too thin.  He has aphasia (which means he can't figure out how to talk) and dysphasia (difficulty swallowing).  He also has a very high arched palate which may be part of his swallowing difficulties.  He has bi-lateral choroidal coloboma (which means a hole in the back of both of his eyes) and strabismus and nystagmus (which means his eyes wobble up, down and sideways).  The last time we took him to the eye doctor, she said he also has some astigmatism.  He has a certain degree of ataxia (which means he shakes or trembles a lot especially when tired.)

All of this is because something went wrong about a month before he was born.  Maybe he had a stroke.  He was born with brain damage in the back part of his brain.  He can't walk because he has damage to his vestibular nerve and so he has very little sense of balance.  He isn't very strong, tires easily and has very low muscle tone. He also doesn't have a very good temperature regulator, so I can't take him outside if the weather is too cold or too hot.  He has asthma, so I am not supposed to take him outside on "ozone action days".

He can't chew, which means everything he eats must be pureed or mashed.  According to the dentist, this means his teeth are MORE likely to decay than if he actually chewed, so I have to be very careful to brush his teeth often.  If he swallows something too thin, he chokes and some of it goes into his lungs.  If he swallows liquids that are too thick, he chokes and stuff goes up his nose.  Sometimes things that he has swallowed half way come back up into his nose and then, we think, go back down into his lungs.  He has very extensive nasal polyps because of this nasal regurgitation.

All of his life he has had a lot of congestion.  No one is quite sure why.  He doesn't seem to have any allergies, although he does have asthma because his lungs are so chronically full.  His nose is always running and he often has huge amounts of mucus clogging his nose and throat.  He had almost constant ear infections as a child.  The muscle that is supposed to help his ears drain is either missing or non-functional because of his high palate.  We lost track of how many different ear doctors tried to put tubes in his ears.  (I can think of 5 off the top of my head)  The tubes never lasted long.  But his ear drums have been perforated so many times that he seems to have developed permanent holes in them now, so we don't have as many ear infections.  This is good because he is resistant to some of the antibiotics and allergic to others because he's been on them so often.  Now we try to avoid using antibiotics as much as possible.  He usually gets pneumonia about once a year and we give him antibiotics for that. 

About 6 years ago he had a very bad bout of pneumonia and had to be hospitalized.  At that time we met Dr. Mutlu.  He has been caring for Sam's lungs ever since.  He discovered that Sam also has Central Sleep Apnea  which causes his Co2 levels to rise.  Sam is in compensated respiratory acidosis.  This means his body is working overtime to compensate for the extra Co2 in his blood.  If the Co2 rises too much, he dies.  So bringing down the Co2 has become a central focus of our lives the last 6 years. 

We tried for about a year and a half to get him to wear the bi-pap machine, but finally gave up because I wasn't getting any sleep and started to see snakes in the corner of the room!  Instead, I keep a close watch on his blood oxygen level with a pulse oximeter.  I try to keep it between 87 and 95.  If it gets too low, I have an oxygen condenser at home and I can give him oxygen.  It never gets too high naturally, but sometimes it can get too high with the oxygen condenser.  If it gets too high, the sleep apnea gets worse and his Co2 levels rise.

He has always seemed to sleep best between the hours of about 4 am and 11 am.  I used to dress him in his sleep and take him to the car to get him to school or program.  He was always late.  I would feed him in the car when he woke up.   Dr. Mutlu said this should stop.  It is vital that Sam sleep whenever he can.  When he sleeps deeply, he breathes deeply and this is the best way to bring Co2 levels down.  So we let him sleep.  He often takes a nap in the afternoon as well.  This means that he has been unable to attend Esperanza very often.  When we have a very good day, I bring him to visit for a few hours from about noon to when they close at 2:15. 

In addition to letting him sleep and preparing all his meals carefully so he won't choke or regurgitate, there are also his breathing treatments.  I give him chest PT with a chest vibrator 2 or 3 times a day.  This takes 30-45 minutes each time.  I also give him a nasal irrigation twice a day and nebulizer 4 times a day with medications prescribed by Dr. Mutlu.

I have three recent examples of how necessary all this is.  First: in December my husband had surgery for prostate cancer.   He came home with a catheter and was very weak.  I spent a great deal of time taking care of him.  I skimped on Sam's treatments.  Sam got pneumonia.  Second: whenever I fail to keep all the food and sleep and treatments in balance, Sam is up all night whimpering.  Third: When we went to see Dr. Mutlu on February 22 of this year, Sam's blood gasses were stable!  After 6 years of rising blood levels, and all my efforts to slow the rate of rising, we have finally stabilized him!  His blood levels are still much higher than normal, but this is a great victory.

So, in summary, a brief list of his many diagnoses would include: profound mental retardation, ataxic cerebral palsy, chronic hypercapnic respiratory failure, bronchiectasis, central sleep apnea, asthma, dysphasia and aphasia.  There's probably a several more, but that's all I can think of at the moment.  Dr. Mutlu speculates that he has Joubert's Syndrome.  His small stature is due to failure to thrive in his first year.

Angels

Well, it happened again.  The three of us went to a wonderful concert by Luis and Roy http://www.tenors.net and enjoyed chatting with a lovely lady who told me I was "an angel" for being Sam's mom.  I don't understand why people feel that they need to tell me that.  I realize they think they are complimenting me, but for some reason it just makes me cranky.

Instead of speculating and grumbling, however, I have decided to write down some true stories about "angels".   


Ash Wednesday
Sam and I were walking down the center aisle to receive our annual smudge when suddenly he stopped and refused to go any further.  He reached into the pew beside us and, with his best smile, touched the woman sitting there who was praying earnestly.  As she stared into his smiling face, tears began to flow down her cheeks.  Sam made it very clear that he wanted her to get up and come with us.  People were backing up behind us, unsure whether to "cut in line" or not.  Rather than cause a further scene, she got out of the pew and came with us.  We got up to the altar rail and Sam knelt down beside her and began to babble and stroke her arm.  She just cried and cried and said things like, "Oh thank you."  Then the pastor came by and, instead of just doing his thing and moving on, he knelt on the other side of the rail and said "Thank you Sam for teaching all of us so much about compassion." I don't have the faintest idea what that was all about.  I'm just the mother.  I don't mean to be irreverent  here, but I kind of know what Mary must have felt as she watched her son do weird and miraculous things.  I'm  not the angel.  I'm just the amazed and fortunate by-stander.



Marriage Counselling
I play cuatro.  I love cuatro.  One of my favorite cuatro players is Queque Domenich.  Amazing guy.  Check him out on iTunes.  A few years ago, I got to play "back up" for him along with 200 other cuatro students at the graduation ceremony for the Chicago Cuatro Orchestra Program.  (ok I'm practically old enough to be the grandmother of any of the other students, but I was just as excited as they were.)  It was incredible.  We didn't know he was going to be there.  I will never forget the thrill of playing with him that night.   Afterward, we all lined up and he patiently signed all our cuatros. 



This is the cuatro that my husband misplaced.  I was devastated.  

The next day, when I took Sam to Esperanza, I was still very upset.  Eddie, one of the verbal guys in the room, noticed and asked me what was upsetting me.  I told them and asked, "Do you think that losing such a precious cuatro is grounds for divorce?"  I was sort of kidding.  But they took me very seriously.  When I came back to get Sam that afternoon, they had worked out an answer.  No. Losing one cuatro, no matter how precious, is not grounds for divorce.  5 is the magic number.  If Charley loses 5 cuatros then I can divorce him.  In the meantime, some retribution must be taken for the loss of this one precious cuatro.  The consensus was that Charley should pay for me to take kickboxing lessons.  

This advice made me laugh, which always helps a bad mood.  But when you think about it, it is pretty good advice.  In the room they have one of those big hanging bags that you can kick and hit, and have found it very useful for working out frustrations.  They recommended I try it.  More than that, it is incredibly healing to have someone - or a whole room of someone's - take my feelings seriously.


Murder Most Foul
When Billy called to tell me that our dad had been brutally murdered by a couple of crack addicts as they robbed his home, I went into shock.  I didn't know what to do with myself or what to feel.  I called Kelly, the weaving workshop instructor at Esperanza, to tell her that I wasn't going to be able to volunteer for awhile.  My friend Phillip took the phone away from Kelly.  He knew just what to say.  "Your father has died?  I bet you are feeling very sad right now, aren't you?"  He went on talking very matter of factly about my grief and, as he spoke, I started to feel again.  I started to cry for my dad.  Then Phillip took the cell phone all around the second floor of Esperanza finding people who knew me and telling them, "Jeanne's father has died.  Talk to her."  They all had something to say to me.  Sometimes it was in Spanish, and sometimes it was in some personal language that no one has figured out yet, but they all sounded caring.  I cried and cried and cried as they kept on passing the phone from person to person.  And that was the experience that gave me the strength to face all the stuff that came next.  


These people have cognitive disabilities or sometimes it is called cognitive challenges or mental retardation.  But whatever you call it, it doesn't impact their heart and their feelings.  They give so much joy and love and wisdom.  It is in our hearts that we feel the impact of miracles and they understand heart better than most of us.  These people are a gift from God to me and they have changed my life for the better.  I think that makes THEM the angels.  I'm just a recipient of their grace.


Bobby Tirelli, another friend from Esperanza, says in his new book, "I like angels.  They're real entities of love.  They've saved my life a hundred million times."  Amen, Bobby.