Thursday, June 29, 2006

Advance Directives-Part I: The Incredible Life of Paris Hilton

This is a three part series that chronicle the discussion surrounding Advance Directives, that took place earlier this month during Dear Son’s most recent admission to Big Academic Medical Center. I wrote Part I during the admission.

Sometimes, I just wish I could be Paris Hilton for a day. It’s not that I think she is the most beautiful woman on the planet or that I necessarily even like her. I just know that I’d like to be her, for one day. One day to go shopping, massages, get my nails done, go to dinner and then go to a fabulous party with lots of gorgeous people and just have some fun. I need one whole day of nothing but fun.

Instead, I’ve just dodged another bullet. It appears Dear Son will recover and thankfully they didn’t have to vent him. While the primary diagnosis is “aspiration pneumonia”, they really suspect it was another MRSA pneumonia however they only way they would know for sure is to get a culture, and they will not be doing that this time.

It was Saturday morning and we had been here for since Wednesday. I came down with a horrible sore throat yesterday morning and was sick as a dog. I know it’s just stress but that doesn’t make me feel any better. I am never sick. To be quite honest, I felt miserable and sleeping on this hospital bench just wasn’t cutting it. I could hardly stand up let alone keep my eyes open. I needed to make sure I didn’t breathe or get near Dear Son. I just wanted to go home but can’t leave Dear Son alone. It’s not that they won’t take good care of him, it’s just something I never do.

I was thankful he’s recovering and a little worn out from the second admission in less than one month. I’ve spent Mother’s Day and Father’s Day here. In the last month, we went from death’s door to the gymnasium door for graduation and back to the hospital. It was all going to be resolved and it was going to end. We could go back home in a few days and resume our lives and see the kitty. I would be a good Mom and let go of my idea of wanting to cook for my son and instead switch to 100% g tube feeds with Pedia Sure for the rest of his life. It was a done deal. Until the PICU Attending Doc came into the room.

Our conversation started rather casually and quickly got deeper. She moved from a standing position to sitting on the couch to begin to talk about the next steps. You know you are in trouble when that happens. They don’t come in to sit. That means they are going to tell you something that you don’t want to hear and something that they have to tell you. Standing is good, sitting is bad. Just some little things I’ve learned after all of these years.

I thought I was way ahead of her; that she was going to talk to me about directives. But I was wrong. Sort of.

No, the conversation started with the fact that while they couldn’t be certain it was a MRSA pneumonia, they decided to treat it as such just in case. Then she moved on tell me that if Dear Son can’t manage his secretions that this scenario could repeat itself again and again and we could be here every month. If that should happen, then we may need to consider a trach so I could suction the secretions to keep him from getting a pneumonia. Suction him to keep him from getting a pneumonia and to keep them from having to vent him again and again, suction him to keep him living.

Then there is Palliative Care that I can speak with. And then of course, they could also just give him some oxygen and make him “comfortable”. I have to admit, I was a bit blindsided by the conversation. She was asking me to make some choices. I assumed I needed to make them now and I just wasn’t ready.

I sat there thankful and grateful for her honesty and preparing me for the fact that this was never going to end. Inside, it gets really hard. I slip into a deep depression, wondering how on earth I can ever live without Dear Son and feeling my options closing in on me. The choices get worse, kind of like trying to decide which thing you are going to eat on Fear Factor. There are no good options. My mind quickly shifts to self pity: What did I do to deserve this life? What did Dear Son do? What does Paris Hilton do? I want what she’s having.

Wednesday, June 28, 2006

Head vs. Heart

Maria of has organized The Literary Cheese Wheel, challenging some bloggers to write the cheesiest, dorkiest piece we can about one entity meeting another. After reading a few of these, I couldn't resist. Here goes:

Head vs. Heart

“Who’s in charge? I am in charge, that’s who. That’s why they so often refer to me as the brains of the operation.”

“Well, if that’s true, then how come you can’t exist without a heart, mind you? You would know that if you truly were the "brains" of the operation, as you like to say.” “I mean, really, if the heart stops, that’s it! Finnito! You are done!”

“Yes, that’s true. But what have you got if you haven’t got the brains? Nothing, I say. They’ll call you a vegetable. How do you like that!”

“And you think women are attracted to brains?”

“Why yes, I do.”

“No, they want a man with a good heart. That’s what attracts them! (Wink, wink).”

“You can’t be serious? Have you ever heard a woman want a man without any brains? No. If they don’t have any brains, they’ll say, he’s got his head up his ass.” Women want a man with brains, I tell you.”

“No. They want a man with a good heart. Women don’t divorce a man with a good heart, you know.”

“Well, I can tell you, the brains are what women want. I know that. If they haven’t got any brains, they’ll call them a dumb ass. How do you like that?”

“As I recall, women also use the term, smart ass, too.”

“Why, yes, women like smart men. You don’t ever hear women say it’s a smart heart, do you?”

“Of course not, we use the term heart smart, because it’s the activity that gets me going and that is precisely what’s good for you. Gets me all revved up! Gets me pumping! Oh, yes, gets the blood flowing! Oh, I am getting excited now! Gets the missus all worked up and happy!! That’s the heart for you! And where are the brains at that time? They don’t care about the brains then, do they?” Ha, got ya there, my man!

“Oh, yes. And why do you think the heart got all worked up? Did you think about that? It’s because the missus wants another little one with some brains around the house. She never says, I want a child with a good heart. No, sir. It’s the brains, these women are paying for. Like Harvard or Yale graduate. They aren’t asking for a good heart.”

“Well, maybe they should. What good are the brains without a good heart?”

Tuesday, June 27, 2006

The Bus Stop

It was a cold windy day, the kind where you hope you won’t have to be outdoors for two minutes, let alone anything more. There was a little snow on the ground and patches of ice everywhere, small ice patches that were stuck between patches of grass and on the uneven surfaces of the parking lot. The wind was whistling and it was just plain, bitter cold. I was happy to riding in my warm vehicle, just coming back from my lunch hour heading towards my office. There were plenty of businesses on either side of the street, several malls and many strip type malls, if you could call it that, but lots of them since this was an area that drew a fair amount of shoppers or shopper’s dollars. There were bus stops on this street, but they were rarely used, not even by poor people, because there weren’t many in this area. To be quite honest, I never paid much attention, because I had never seen anyone waiting for a bus, until today. Off in the distance, was a man, standing on the side, waiting for the bus.

The bus stop consisted of a sign, noting the route number and not much else. There wasn’t a bench because well, there weren’t many people that took the bus and because they didn’t want anyone taking it either. I noticed the man, standing with a cane, or attempting to, waiting for the bus. I couldn’t get a very good glimpse of him, since I was so far away, but I couldn’t take my eyes off of him. His cane kept giving away on him and it looked like he would fall at any moment. He looked like he would be unable to stand without the cane and coupled with the windy day, it was an disaster just waiting to happen. As I drove closer, I saw the problem. There were patches of ice mixed in with the grass, making it difficult for him to balance.

I looked at him and thought of Dear Son. Dear Son was only five at the time, and I couldn’t get the image of Dear Son trying to stand and balance in his little walker, out of my head. I thought of him in his AFOs (leg braces) and how difficult it was for him to stand and then looked back at this man. I turned my heat on high and pulled my SUV over and asked him if he wanted a ride. Not a smart thing to do of course and the first time I had ever done something like this. I was a well dressed woman with money in my pocket and yet here I was about to pick up a stranger. I thought for a moment that perhaps he could try to rob me or worse, but that thought quickly evaporated as I watched his cane give away again under the ice. No, I wasn’t picking up a stranger, I was helping someone who needed it today. I just couldn’t let him try to balance waiting for a bus on a cold day like today. It just wasn’t right.

He got in and immediately the smell of alcohol filled the interior of my car. The smell soon intensified with the heat. I tried not to choke on the smell while he thanked me for the ride. We made small talk and I asked him where he needed to go. He was heading towards the mall which was located directly across the street from where I worked at the time. I didn’t tell him this of course, but told him it wasn’t a problem. He needed to catch another bus to get home. There would be four busses that he would catch on any given day to get to his job and another four busses to get home. He couldn’t drive because he couldn’t get a driver’s license due to the seizure meds he was taking. That made getting a job and getting to work all more difficult. I talked about Dear Son and his seizures trying to pass the time and to let him know that I understood. Somehow he began to talk about his accident that led to his disability. He was in a car accident and was in rehab for many months. Seizures developed after the accident. He was on multiple seizure meds which I recognized, many of which were similar to Dear Son’s meds at the time. He admitted he was still in quite a bit of pain. I wondered which came first, did the alcohol cause the accident or did he start drinking to relieve the pain? It was neither here nor there I decided, because to be an adult man and unable to drive and stand would be difficult enough and not much of a life. That much I knew. I could tell by his demeanor, his eyes glancing down, that he didn’t exactly feel too great about himself. I also knew it was important to look him in the eye as we spoke, to let him know that he did matter. The car was really getting hot now but I left the heat blasting on high because his hands were still red from the cold. We arrived at the bus stop and he thanked me for the ride. As he got out of the car, I was thankful for the opportunity he gave me, to do something nice.

Sunday, June 25, 2006

Little Cat's Fake Girlfriend

I was in the Gift Shop at Big Academic Medical Center searching for a little something for Dear Son as I usually do. I saw this Little Cat all curled up in the corner and bought her. She looked remarkably similar to our "little cat", an eight pound Munchkin cat named Wiggles or Wiggs as we sometimes call him for short. Wiggles is our Munchkin cat with the short legs that was due to a genetic mutation similar to the dwarfism gene in humans; as you may recall, I wrote about a post about our cat some time ago. I bought this little cat for Dear Son and set her on his hospital bed. Dear Son had lots of laughs as I talked about how much this cat looked like our little Wiggs.

Upon arriving home from the hospital, we set our Little Cat on the sofa. Wiggles eyes bugged out from across the room and he jumped up on the sofa to check out Little Cat. He determined quickly that while she looked like a real kitten and even felt like a real kitten, she was a fake. He quickly dismissed her. Until today.

I left Little Cat on the sofa and today he decided he just might like a Missus. He came over and lovingly licked her rabbit fur. He curled up beside her and quickly moved away when he saw me looking at them together. Then he decided he didn't care and layed down beside her.

So, now what? Is this the equivalent of a blow up doll for my cat? Or does he just want a "trophy wife"? I dunno. Maybe I just opened up a can of worms.

Note: Photo on the left is our short legged cat Wiggles standing on the kitchen chair. Photo on the right is the "fake" kitten and Wiggles.

Friday, June 23, 2006


Dear Son had a pretty fun day yesterday laughing all day with one of the student nurses. Then he had a visit from the clowns at the hospital-Doctor Cowboy and another clown, whose name escapes me. He darn near split his gut open laughing so hard. I was sorry that I didn't get a picture of them because her hair was truly a masterpiece that words can not describe. She had all of her hair pulled straight up on her head (held in place with a flag pole in the middle) and she was a real masterpiece. After that excitment, the student nurse and I took him for a walk in his wheelchair in the hallway. As we passed a nurse's station, one of his former nurses recognized him and called out, "Hi, Handsome". Dear Son's head whipped so fast around in her direction, I thought he was going to have whiplash. I was laughing so hard at that.

Tonight he completes his final doses of IV antibiotics and we will be released in the morning. I am so excited to be going home.

Note: I took this photo of the female clown the following day. Her hair looks quite beautiful, don't you think?

Wednesday, June 21, 2006


Dear Son continues to improve. He is off the oxygen and breathing room air for over a day now. There is still a spot on his right lung but he sounds much better today. I expect we should be going home in a few days as soon as the Vancomycin completes it's course which is Friday night or Saturday. He looks really good and is happy.

I am sorry I didn't update sooner, I was sick myself and went home for two days. I am feeling much better.

Thank you for all of your prayers, e-mails and concern.

Sunday, June 18, 2006


Dear Son continues to improve. They put on a high humidity cannula today at 100% oxygen and 4 liters so we are making progress. They are calling it an aspiration pneumonia however they continue to treat it with IV antibiotics as a MRSA pneumonia since they can't get cultures. If he were vented, we could get some cultures from the lung but since he is not, they won't get them. They are recommending a full 10 day IV antibiotics on Vancomycin so we will be here for a few more days (they are also treating him with a second antibiotic). He remains on albuteral treatments every two hours. They are starting him on g tube feeds today and we will remain on 100% g tube feeds indefinitely. It appears we should get out of the PICU tomorrow and head to the Pediatrics floor for the remainder of the admission.

Saturday, June 17, 2006

The Road Less Traveled-A Father's Day Tribute to Dad

They were watching television. Dear Son was pretty small yet, the floppiest sack of potatoes you would ever meet. His Dad, would sit on the floor with his legs apart and his back leaning against the sofa, and prop Dear Son in a seated position between his legs so that his back would be supported by Dad’s stomach offering full support for Dear Son. Dear Son would tilt his head back, his little mouth would open and Dad would drop a spoonful of his milkshake into Dear Son’s mouth. The milkshake, was a combination of pop and ice cream, that Dear Son loved. Inevitably, at some point, some of the milkshake might run down Dear Son’s chin and onto his shirt, usually a new white one, that would prompt a scolding from Dream Mom, about keeping his shirt clean. The boys nonetheless, would carry on, each happy to share the milkshake together. This tradition, would be repeated over the early years, until Dear Son decided he no longer wanted any ice cream of any kind. By this time of course, he was too large to sit with his Dad.

His Dad was always good to him. When Dear Son was only three, he was sent off to school. I worked part time at that time, and Dad worked the night shift, so he could earn more money to care for our family. Upon coming home from his shift, he would get Dear Son off to school every morning, always on time, and never, ever, even a minute late. I could always count on Dad, to make sure he was fed, warm and dressed for school, even if his clothes weren’t perfectly matched, as I would like. Dad’s idea of fashion, meant that all clothes in the same color family went together, even if the shades were not compatible. Thus, all red tops and bottoms went together, all blue, etc. Sometimes, I would have a fit over this until I would step back and look at the big picture and realize that the important stuff, that he is warm, dressed, and on time for school, were being met. I also decided I could set out his clothes the night before and the dilemma was solved.

Over the years, Dad had one vision. Some call it denial, some call it a vision. I’ll call it a vision, because it’s from the heart. His vision, was that his son would be normal. Any picture that would be taken, would be met with a prompting, “Dear Son sit up straight” so Dear Son would look normal.

Dear Son is the spitting image of his father. As the bus driver once said, "No DNA test required." His Dad is a muscular type, a former competitive bodybuilder and powerlifter in his twenties. We always thought our children would be really into sports; we never dreamed we would use our muscles to lift him into a wheelchair. Dear Son was always a very slim child. My sister used to call them the “Twins” after the Arnold Schwarzenegger movie featuring Arnold Schwarzeneggar and Danny DeVito because Dad was big like Arnold and Dear Son was short like Danny DeVito. Today, Dear Son is getting much taller and it’s looking the roles might be reversed.

More recently, when Dear Son hit puberty, his Dad would teach him how to be a man. He would tell Dear Son that he needed to sit up in his wheelchair like a man or tell him to cough like a man, whatever that means. Or he might tease me for watching my decorating shows and tell me that he was turning on some “car” shows or auto racing for them to watch. I would laugh of course, telling him that those 500 laps did nothing more than put him to sleep. Dear Son didn’t care of course, because he was laughing and sitting with his Dad. His Dad was a father who would give up everything for a son, who could give nothing in return, and yet, it was always more than enough.

Every father has dreams for their only son, the son who will rise up and become the man of his father's dreams. Sometimes, dreams don't work out as you imagined.

They say that the eyes are the windows to the soul. If you look closely into Dear Son's eyes, I bet you would see the following message, dedicated to his Dad for Father's Day. It would go something like this:

The Road Less Traveled

I am the son, no father every dreamed,
A journey, no father would ever wish for his only son,
A journey, few have traveled,
A journey, none would want,
The road less traveled,
With you Dad, my father, and my friend,
Thanks, Dad, for an incredible ride.

Happy Father's Day with all my love.


Dear Son


Dear Son looks better today and has his eyes open. They took him off of the BiPAP machine an hour ago and put him on the high humidity face mask at 60% and 10 liters. He seems to be doing o.k.

Friday, June 16, 2006


Dear Son was admitted to the Pediatric Intensive Care Unit yesterday. Last night, his respiration increased significantly and he was started on the BiPAP machine at 100%. This helped him a great deal and it has since been reduced from 100 to 80 to 60, where he remains currently. They continue to treat it as an aspiration pneumonia; the chest x ray seemed a bit better today so that is very good news. At the present time, he remains unresponsive but I am pleased that he is progressing in the right direction.

In retrospect, I am glad that he was able to attend his graduation last week. It made the events of this week a little easier.

Thank you for all of your prayers, comments and support. It was nice to read them throughout the day.

Thursday, June 15, 2006

About Dear Son

Dear Son was hospitalized yesterday for respiratory distress. He was admitted around 11 a.m. however we are still in the Emergency Room waiting for a bed as of this morning. He had a fever and was working pretty hard upon admission. It does not appear to be a bacterial pneumonia but they are treating it as such with several antibiotics to be safe. They started him on two liters of oxygen and they increased it to three liters. That is all the information I have at this time. I have not spoken with the doctors today.

I will not be posting until we are home. I do have a Father's Day post nearly completed and hopefully will be able to post it this weekend.

Thank you for your support and concern.

P.S. I spoke with several physicians throughout the day. Dear Son has been moved to the Pediatric Intensive Care Unit this afternoon and continues to work hard. They have him on albuterol continuously now as well as the same two antibiotics. Interestingly enough, he developed an allergic reaction last night to one of the antibiotics so they are treating that as well. They have discontinued the g tube feeds in case intubation is necessary however I am hoping that will not be the case.

Wednesday, June 14, 2006

The Looking Glass

I was nearing the entrance to get on the highway when I saw her. I did a double take at first, since there’s normally no one walking in this area. I don’t come this way often, but when I do, I have never seen anyone walking. She had a boy in a wheelchair, who looked to be about twelve or so. He was tall and thin, his long slim legs coming together at the knees and then going out at the feet like an isoseles triangle. I tried to get a good look at him, but he was still a distance away, while I was stopped at the red light. The boy looked to have cerebral palsy. It was weird I thought, that I could almost guess his diagnosis, from this distance. He had on jeans and a spring jacket, much the way I would dress Dear Son, on a day like today. You had to always think ahead, when you’d take them out, to make sure they were dressed warm enough, since they don’t move while you are walking them, and that I will always be warmer, because I am the one getting the exercise. They were stopped at the light, on the opposite side of this rather larger intersection. When the light changed, she began walking him across the street, in his large wheelchair. The boy smiled and became pretty excited, that they were moving of course. Many times, he lifted his feet off of the foot rests and waved his arms uncontrollably, in his excitement. I couldn’t help but think, he reminded me an awful lot of Dear Son, only Dear Son looked healthier, if that were an option.

The woman looked surprisingly like me, in a way. It was not only her clothes but her hairstyle and her mannerisms. I watched her closely as if to see what impression I might give people as I walk with Dear Son as I normally do. She walked a little bent over, because the wheelchair handles sit low, causing you to bend over to get enough leverage to push them. It’s easier of course, when I attach the tall handlebars to Dear Son’s wheelchair, because it eliminates this problem and then my back doesn’t hurt so much. It was a bizarre sight seeing this woman, on the one hand it looked like I was looking at a mirror image of myself and on the other hand, it was like I was on the outside, peering in, seeing my life, or her life as it may be, from the outside in. She crossed the street with her boy and then proceeded to wait for the next light so she could walk north, approaching me. I was in the far right lane heading south, and she was a good six lanes over, but still, I kept watching her as if I were watching myself.

From a distance, she had that tired look on her face. Her smile lines were non-existant and the lines on her mouth pointed down. She looked down as she walked, partly because of the lifestyle I am sure, and partly to keep an eye on her son’s feet, that dangerously dangled below the footrests as she walked across the busy intersection. She looked up only to see the lights and to make certain it was safe for her Dear Son. That much I could tell. I couldn’t stop staring at her. It was like looking at my past, present and future all rolled into one. She did look tired though. I don’t know that I look tired, but I certainly feel tired sometimes. This life will wear on you after a while. I always say it’s the lifestyle that depresses you and never the life. I tried to get a glimpse of her face but I couldn’t make it out with all of the cars passing by. Finally, she approached the end of the crosswalk. I was stunned to see that she was much older than I originally thought. She wasn’t wearing any make up and she was far beyond the age that that would be a good decision. I wondered to myself how much this lifestyle ages you, always taking care of someone and never having much time to care for yourself. I imagined that she might be much younger than she looked, kind of like the people they get for that show, “Ten Years Younger” where they bring on a person and put them in a soundproof booth and have them guess their “real” age, then do a real makeover and repeat the same scenario, to see if they were able to get them to appear, “ten years younger” to the public.

I continued to stare. Had she been closer, I wouldn’t have been able to do this without seeming rude and yet I was just fascinated. I was trying to figure out if she was the mother or the grandmother of the boy. Not that it mattered of course, but I was curious. Did the lifestyle age her that much? More importantly, does or did the lifestyle age me that much? That was the bigger question and the answer that I really wanted. The boy was happy though, much like Dear Son. It was amazing how much information I could gather about the boy. He was well cared for, I could tell and having a ball. That would make her happy too; I just knew it. Our lives were more similar than different I decided. The light turned green and I stepped on the gas. Anxious to move on.

Thursday, June 08, 2006

Fast Food

We had a little ritual, Dear Son and I. Every time he was released from the hospital, I would make his favorite dinner, the night we got home. Sometimes, days would go by before we could go home, sometimes weeks and one time, over a month went by. During his admissions, he might go from eating “some” hospital food or not eating anything at all, depending on how sick he was. It was a routine I started a long time ago, to celebrate being home and to celebrate being able to get a hot, home cooked meal, something I miss after weeks in the hospital.

Dear Son is definitely a creature of habit. He likes pretty much the same foods, over and over and over again. That isn’t to say that he doesn’t eat healthy, it’s just that he likes the same foods. From the beginning, I worked on getting at least five fruits and vegetables in every day and do my best considering his oral/motor issues. I also let him regulate his appetite and tell me when he was full. This might be as simple as him turning his cheek when he was done, but you always got the message.

His paternal Grandma would always like to give “tips” on what Dear Son should eat. She always was trying to get him to eat some dessert, but he would not have any of it. I would always tease her and tell her that Dear Son is the skinniest boy in the family, as if she were a failure. She would always laugh of course and Dear Son would give her a big smile.

His normal diet consists of fresh fruit pureed or finely chopped in his oatmeal for breakfast, and then poultry or occasionally meat, vegetable, and mashed potatoes for lunch and dinner. These were easy things for him to eat, especially with his oral/motor issues. Summer was always exciting because the fruit would always be sweeter, once it was in season, than it was during the rest of the year. We’d pick up the sumptuous peaches, blueberries or strawberries, etc. sometimes at a farm stand and other times, in the produce section like we did normally. It was just the sweetness of everything when it was in season, that he loved. I used to talk to him about it when we would buy it, how fresh it was and how good it would taste in his cereal. For lunch, he used to eat applesauce or fruit/yogurt and a sandwich until a few years back when decided he would prefer a “hot” lunch every day. Since the school lunch is never anything he can eat, his “new” lunch would simply be whatever we had for dinner the night before.

At school, they would take him out into the community once a week. The purpose of this, is to get them to try new things and learn how to act appropriately and/or learn the skills of daily living, such as grocery shopping. They might take the kids to a restaurant, to the park or to the grocery store and buy their favorite treat. Dear Son will have none of this. He only wants to eat his mother’s home cooking.

He used to have one kind of cookie that he liked a few years back. He loved this cookie so much that he used to give me these flirty eyes and a great big smile when he wanted some. He would eat lunch in his wheelchair and then look over towards the armoire where his special cookies would be stored inside in a special container, just for him. I used to call them his “cookie eyes” and somehow that became a nickname of sort that stuck. The cookies he liked, were Nutter Butter Bites, because they were made with peanut butter and they were bite size. No other cookies would do. Ever. He would rather eat nothing, than to eat any other cookie, including home made peanut butter cookies. He gave up eating these cookies a few years back.

He also doesn’t like desserts, of any kind. I admit I typically don’t keep any junk food in the house nor do I make desserts. It’s not because I don’t like them, but I try not to eat them. So I can’t say that he’s grown up around this. But it sometimes presents a problem when say, there is a birthday cake at school or they go out for ice cream and he refuses to eat. They also do a lot of cooking at school, as part of their activities of daily living, but he won’t eat that either. He loves “mixing” though, where they hook up a switch for him to activate the mixer but eating, no thank you.

Since that time, he has two favorite foods: blueberry yogurt and Grandma’s Tuna Pot Pie. Grandma’s Tuna Pot Pie is an old family recipe that is the least calorie friendly dinner that we eat at our house. But it’s his favorite. Every time he is released from the hospital, I make him a tuna pot pie with broccoli on the side, mashed potatoes and a glass of skim milk. He loves it. I roll his wheelchair up to the table and he takes his face and tries to smash it down into the food, his way of telling me to hurry up, because he wants to eat “now”. I try to stop this of course, grabbing his shoulder and telling him to give me a minute and then proceeding to give his a spoonful as soon as possible, so as not to ruin his shirt.

Except for now. The last meal he ate was on May 9th, the day before he was admitted to the local hospital. Prior to the admission, he was able to eat pureed and soft foods or foods without much texture. This made meat and some vegetables out of the question, but I learned to do some work arounds and cook things differently so he could eat them. But now, it’s different. I pour in a can of PediaSure four times a day, at nine, noon, three and six and then I am done. Four more cans are used for his night feeding which starts at nine p.m. and run until seven a.m.

So I am in essence, lost. I honestly don’t know what to do with myself. I hate not cooking for him. I miss the smell of a turkey roasting in my Compact Showtime Rotisserie, that I purchased from QVC, which is my favorite cooking appliance. I put in a whole turkey, slice up some sweet potatoes to cook on top in the vegetable tray and then steam up some broccoli on the stove, and we have a delicious meal in about sixty to ninety minutes, depending on the size of the turkey. The remainder, is sliced and weighed in three ounce increments and stored in bags in the freezer, to be used for salads or sandwiches. I have cooked dinner exactly twice since I have been home. It’s not too much fun eating dinner without my favorite buddy.

The plan is that he will remain on the PediaSure, until it is safe for him to eat and until his throat heals. At this point, he is not able to eat or drink anything by mouth. I have tried to get him to take a drink, but he will have none of it. I fear that he may never go back to real food, a fear I am certain is unfounded, but I remain hopeful nonetheless. I just know that this isn’t my definition of motherhood, pouring a can of PediaSure into a bag for supper. Fast food, it’s just not right.

Wednesday, June 07, 2006

Tuesday, June 06, 2006


I am not sure at precisely when they started to occur, but somewhere after the first thirty hours in the Pediatric Intensive Care Unit (PICU), the conversations began to get weird. This is by far the scariest part of what happens in the PICU, because it’s the part that alarms you the most, and yet, is the part where no one will provide you with the “real deal”. It’s the part where you know things aren’t going too great, or rather, you are beginning to cross that line of never coming back. These conversations are started innocently in the beginning, usually by one of the not so great nurses, in the PICU. Sometimes, these are the night nurses, but the conversations are definitely not started by the really good ones, because they know better not to go there.

The questions might start kind of innocently, like, “What’s his baseline?” Not a bad question to ask in the beginning, but a few days into it, it’s not looking like he’s coming back. So I would describe his baseline, which would be met with a look on their face, that was equivalent to a flat line on a heart monitor. A kind of disbelief, as if I were lying about this kind of thing, which I am not. It’s not that they can’t imagine it, it’s just that we are so far beyond that baseline, that it’s evident, it was probably the last time I would see that behavior. The question is asked of course, as if the motionless, comatose, teenager, hooked up to the ventilator, has a normal baseline of doing basically nothing. Then, perhaps, there might be an inkling of hope that his baseline, being similar to his current state, isn’t so bad.

Then there is the sweet nurse, who knows precisely what to say. She says, “I can’t wait to meet Dear Son when he opens his eyes.” I tell her all about him and she really was the best nurse, my favorite in the PICU. I bring in pictures of Dear Son the next day, from when he was younger. I bring in the pictures more for me, because I love to see his smile. She looks at the pictures in disbelief and blurts out, way too fast, “How long ago was this picture?” She means of course, did he go from being halfway normal to nearly dead in a few days?

Then I ask the question about being unconscious. This is a question that they all love. I say to them, “Is Dear Son unconscious?” I kind of know the answer to that, but I’d like them to tell me otherwise. His eyes have been swollen shut for almost a week now, other than the slit he exposed on Mother’s Day for me, and a brief opening on Friday at the local hospital. They are taking blood gases faster than I can keep up. He is totally unresponsive to me and I am unable to arouse him. The nurse begins to do the dance, not really wanting to answer my question until I back her against the wall, with my questions. It’s not that I don’t really know the answer to the question, but rather, I want a different answer than the one that I have in my head.

Their were lots of other examples of this weirdness, that escape me now. But I distinctly remember how odd the questions were starting to become, mostly from their end. It was as if they knew death was inevitable and yet, were hoping it was not. I simply wanted their honesty; that is always the best as far as I am concerned. Not answering my questions, or avoiding them, just makes me imagine things far worse, since I don’t always know what to expect. Honesty always brings me peace because it frees me from worry, although sometimes, honesty might generate a few more questions.

The next episode of weirdness comes at the microwave. I am heating up my veggie burger when a young Hispanic father, gets in line behind me in. He has a home made lasagna, that looks absolutely divine, compared next to my veggie burger and spinach salad. I ask him how long he’s been here. He answers, “Since one o’clock.” I didn’t mean him, I meant the patient. I cut him a lot of slack, after all, he’s in the PICU so things probably aren’t too great. He came in to relieve his wife. I asked him again, who was in the PICU. He said his thirteen year old son fell fifty feet out of a tree. Horrified, and wanting to know what happened without any gory details, I try to ask what’s going on. “Did he break anything?” “No,” he replied. I said, “He didn’t break anything?” I repeated my question in disbelief. “No, he didn’t break anything.” “That’s good news, I said.” Frustrated, I plugged on. I kept asking a ton of questions and yet, none of the answers would reveal the reason for the PICU admission. I continue on with the father and find out the child has some bruised ribs. O.K., I am thinking, you don’t get into the PICU for bruised ribs. My veggie burger is almost done and after a few more questions, he blurts out that his son had some holes drilled into his head to relieve the swelling. He tells me this, like he was reading the instruction manual on his pc. Very matter of fact. Zero emotion. Oh, my gosh, I think. I have a flashback to a conversation between a mother and a surgeon this morning in the hallway, where she asks about facial reconstruction. I wonder if this is the same child since the father mentions the fact his face was messed up too.

The microwave buzzes. I take my food and tell the father that I hope his son improves soon. You would think I would be a bit more eloquent in these situations however experience with this has not proved to be the case. I sit down to eat and the nurses come to suction the ventilator and World News Tonight comes on to talk about the war. Weird.

Sunday, June 04, 2006

The Big Day

Dear Son’s schooling began at the age of three. I was very worried, sending a child off to school, who could not walk, talk, feed himself or do much of anything. The school bus would arrive at our home, and I would wheel him onto the little yellow school bus, then leave for my part time job. Dear Son loved school. I was so worried and yet, he adjusted so well. There were seven children in his classroom, five little girls, and two boys, one of which was Dear Son. His teacher called it Dear Son’s harem, because the little girls would circle around him and dote on his every move. I found this hard to believe, until I attended one day, and saw the little girls in a circle around him. He would look at something, and one of the little girls, would couldn’t walk herself, would scoot her body across the floor, like a mermaid, and retrieve the object for him. He would give her a big smile and the scenario would repeat itself many times a day during the school year.

School consisted of physical, occupational and speech therapy, on a regular basis. Therapy was hard for him, not only didn’t his hands and arms work, but he had fluctuating tone in his body, which made therapy more difficult. His shoulders and chest had extremely low tone and he was quite floppy at times. Everything he did, was just plain difficult. He’d take naps at school too, always in the same spot, nestled in a corner, near the teacher’s desk. Substitute teachers would soon learn the routine, when they’d try to move him to a different area, and then he would fuss until they put him back into the same spot.

But there was one thing Dear Son wanted more than anything. He wanted to walk. Walking was problematic because he couldn’t use a regular walker because his arms and hands didn’t work. He required a special walker that would attach around his torso, to assist him. He always loved the physical therapist the best, because he’d get to practice. He’d get annoyed at the activities to build strength for walking, he just wanted to walk. And when he did, he would come alive. His face would light up, he would squeal and he would try to get his feet to move really, really fast, forgetting everything the therapist just taught him about standing and balancing. He wanted to go. And he wanted to go fast!

He would work so hard at doing things that just came so easily for most other kids. He would endure countless minutes in a stander every day, a stander where the kids have their leg braces on and are strapped upright in a standing position to increase their ability to weight bear on their legs and to help their bones grow strong. If you have ever witnessed a child in there, it’s not very pleasant to watch. When they can’t talk, it’s even more difficult, because you worry that when they get tired, and they can’t speak, that they can’t tell anyone. I asked the little girl who went to school with Dear Son years ago, who I wrote about in the Bingo story, what it was like to stand in the stander. She was the young lady who at fifteen, just had her sixth hip surgery. She said, “It really hurts. Sometimes, after I am in there five minutes, my legs really hurt and I try not to think about it.” The children were sometimes in these standers, for up to forty five minutes. I wrote too about Dear Son, in “The Silent Champ” where he worked for three years on trying to pull himself upright into a sitting position. My point is that these kids work hard, and have worked hard for years.

Years passed and the kids grew with him. Neighborhood kids that were the same age, wanted nothing to do with Dear Son. They weren’t being mean, they just didn’t have anything in common. He couldn’t talk or walk so he couldn’t play the same sports as they did and his hands didn’t work, so there were never any game boys or anything else for him to play. Bikes were out of the question and just about everything else was too. There was nothing that was normal, that they did, that he did too. He was like an outcast.

The Special Needs Programs were great though and Dear Son flourished. His friends on the little yellow bus and in his classroom were great. Always the extrovert, always the handsome boy with a great smile, that was Dear Son.

So in January, I received a letter regarding his high school placement in the fall, which means he would be graduating from the eighth grade this year. Curious, I sent an e-mail to our District Coordinator to see if he would be receiving a “real” diploma, a different certificate, or none at all. While I know that he certainly doesn’t meet the requirements for graduation in an academic sense, he still deserves some credit, for working so hard. She responded and said that he will get a “real” diploma. I was estastic. For once, Dear Son will be normal. Average. Like everyone else.

Eighth grade graduation pictures were taken in February. In early May, I wrote the check for the cap and gown. They would be green, the school colors, which would look great on Dear Son. Graduation was just around the corner. I was so excited. Then, the MRSA pneumonia occurred. At this point, hoping he survives becomes my number one priority and graduation was the furthest thing from my mind. While he was on the ventilator, I received a visit from the school nurse and the District Coordinator of the Special Education Program. During the course of our visit, the District Coordinator mentioned how much she knew I was looking forward to the “graduation” and that she hoped Dear Son would recover and attend. My eyes began to tear up. It was the kind of conversation that you have with someone when you know there isn’t a snowball’s chance that this might really happen, but you say it because you are trying to be nice and give them hope. On that day, I was just glad he had lived through Mother’s Day, but he was still on a ventilator and I thought he might die.

Fortunately, Dear Son did recover from the MRSA pneumonia and I was asking his doc about his recovery. He said that the recovery is typically two to three months, so Dear Son would not be returning to school. My hopes for the graduation were dashed. On a whim, I decided to ask him if he could attend. He said that he imagined I could strap him in his wheelchair and wheel him into the graduation, if I wanted to, but that he didn’t think he’d be ready. I spoke with his teacher last week, about the big day. She agreed to attend rehearsals and offered to take him into the gymnasium to receive his diploma, if he is able.

Dear Son is home now. He’s happy, he’s smiling and I have been talking to him about this big day, on Tuesday, June 6th, 2006. I can’t wait. We plan on attending the graduation, unless of course, he is not feeling well. I will finally get to see my son graduate. And get a real diploma. And be normal, for one day. This graduation, is for me. I’ve earned it.

Friday, June 02, 2006

Part IV-The Conclusion

It is now Monday. Thankfully, Mother’s Day has passed. The transfusion that was performed Sunday evening (Mother’s Day) is the turning point for the MRSA pneumonia. It stabilized the blood pressure although he was still considered a bad stable. Over the next few days things begin to improve. The vent settings are reduced, two of the three antibiotics run their course. The ventilator was a major concern up to this point since Dear Son is not very mobile normally. Because of this, I am told that it makes getting off the ventilator more difficult. Dear Son eventually gets off the ventilator and is moved out of the PICU to a Pediatrics floor for a week and is finally released to go home. Today, he remains on g tube feedings five times a day, respiratory therapy four times a day, chest PT four times a day, his seizure meds four times a day and other than that seems quite happy. He is still not able to eat or drink at all. I miss cooking his favorite meals and somehow it’s not quite the same. I am told the recovery is two to three months.

In the end, I am thankful that he recovered. I wonder how many more of these emergencies he will have and how many more he can endure and how many more I can endure. They change you after a while. The little things that may have irritated me ten years ago, are not a big deal. I have a hard time not rolling my eyes when people complain about little things. I’d often like to tell them to quit complaining but I don’t because I realize that their life is “normal”.

It changes you too because it gets harder and harder to define a true emergency. When you’ve been through the big stuff, the little stuff seems so minor, that you wonder if you should even call. I often use the analogy that it’s like having a fire in your house every day-at what point does the fire get big enough that you need to call the fire department? For other people, any fire in their house will elicit a call to the fire department.

Having all of these emergencies prepares you oddly enough. I have an up to date emergency information sheet, a car bag packed at all times for emergencies on the road, a things to take to the hospital list, etc, etc. But I am never prepared for a funeral.

Sometimes people tell me, “How do you do it?” or “You seem to be handling it well.” I do handle it pretty well but then I’ll crash after the crisis has peaked. When the crisis began, I was far more stressed when they weren’t getting results at the local hospital. I can easily see the difference in the level of medical care at each facility. I was relieved when the Air Team arrived. I was concerned when he was comatose and unresponsive on the ventilator. I was panicked when they tested the power at the hospital when Dear Son was on the ventilator and didn’t bother to tell the parents. But none of it compared to the depths of depression I felt when the doc said Dear Son was lucky to be alive. It’s when the crisis has passed that the depression get very deep. You do come out of them quickly but for a few days, I am extremely depressed. It’s that you feel like you’ve just dodged a bullet and then someone says, “Wow, that was close.” You never forget how close it was.

I realize too that one of these days, I am not going to be so lucky. One of the things I miss the most, is working full time and having a career. These last few years have been bittersweet. While I love taking care of Dear Son, I desperately miss having a career. When Dear Son passes, I will be able to resume my career, only to come home to an empty house and realize that the good times were when Dear Son was alive, not coming home to an empty house.

And then there are the issues of when is it all enough? When do you stop trying to save him and when do you let him go? These are the kinds of discussions that people have with their heads. People will debate these issues often but when you are in the situation and have to make a decision, I find I follow my heart. When you are in the trenches, it’s pretty hard to let them go. You don’t care for them twenty four hours a day and then let it all go so easily. I pray often that I’ll never have to make the decision to “let” Dear Son go.

And finally, there are always those who feel that we shouldn’t save these kids. That somehow, because they are severely disabled, that their lives are less or that they are worth less than other lives. I go to my son’s school and I really look at these children. They are happy. They live every day from the heart. It is more often than not, our paradigm that we live in and because they don’t fit, we think their lives are less. That’s not true. Their lives are harder, because we haven’t figured out a way as a society to make them easier, but their lives are not any less valuable. I think Becca summed it up best the other day on a comment she made on Neonatal Doc’s site when she made a profound distinction between support needs (and the severity of disability) with quality of life. She said, “Quality of life is about being loved, valued, cared for and comfortable. How well your body works and what help you need doesn’t factor into it…unless that help is withdrawn or limited in some way.” And for Dear Son, he is loved, valued, cared for, comfortable and happy. That is the best ending. As Jack Nicholson said in the movie, “It’s as good as it gets.”

Thursday, June 01, 2006

Part III-A Mother’s Day to Remember

Today’s chest x ray is worse, as if that were an option. I have never seen a chest x ray like this one before. It consists of his head and then it’s solid white from the neck down. There are no ribs or anything on the x ray. It looks like a mistake but it’s not. They have diagnosed him with a MRSA pneumonia and Acute Respiratory Distress Syndrome. I’ll learn in a day or so that he was in septic shock as well. His blood pressure is unstable. They have tried to control it with blood pressure meds but it’s not working. Dear Son’s blood pressure continues to drop. He desperately needs a transfusion. They ask me again, or pressure me rather, and I decline. I have lots of questions and I don’t feel comfortable asking them with ten of them (there is one attending and multiple residents) and one of me. I feel like I am being bullied. I just want a familiar face or at least a one on one with someone. I don’t begin to understand the seriousness of this issue and won’t until a few days from now. If they had presented it to me differently, I might have responded much quicker. In the meantime, they continue the blood pressure meds. His glucose is now unstable as well. They have started him on insulin. His body is retaining fluids in all the tissues. They add the pressure boots to his legs to reduce the swelling. He doesn’t look much like Dear Son anymore. I think his face or jowls, that he has now, make him look more like John McCain. I hate John McCain.

It’s Mother’s Day today. The sun is shining in on Dear Son’s hospital bed and it looks to be a glorious day. Dear Son however looks horrible. He is hooked up from one end to the other. If I were to be truthful, he looks like a corpse with a bunch of attachments hooked up to him. I think to myself that this is not really living and wonder if I am being selfish in wanting him to live or if it’s right that they are saving him. I really don’t know the answer to this. I desperately want to kiss him but am scared of the vent tubing. I look at him up and down and try to find an open spot to kiss him. He’s got IVs in both feet, the boots on his legs, a catheter, his g tube, a central line in his hip, an arterial line in the other wrist, a blood pressure cuff on his bicep, multiple monitors on his fingers and hands, a ng tube out his nose and the ventilator tubing taped across his face. I kiss him on his knee and tell him I love him. I love him so much. It’s really hard to see him this way. In a way, it seems like he’s already gone.

Good Morning America, the weekend edition, is on television. They show a female soldier’s two sons and have the camera on the sons so they can see their mother. The little boy, who appears to be around five or six, is supposed to wish his mother a happy Mother’s Day. Instead, he begins to cry because he misses his mother. The Pediatric Intensive Care Unit (PICU) nurse sees this part while attending to Dear Son and asks why the little boy on t.v. is crying. I tell her he’s crying because he missed his Mamma and hadn’t seen her since Christmas. I mention that it’s Mother’s Day and suddenly Dear Son’s eyes squinted a bit as if he were trying to open them and finally one eye partially opens and he looked at me. Dear Son’s eyes had been closed for a few days now. He had been learning about Mother’s Day at school these last few weeks so I know he purposefully opened his one eye to wish me a Happy Mother’s Day. That was the kind of son Dear Son is. He’s very loving and adores his mother. The feeling is mutual.

The PICU Attending Doc arrives in the lobby of the PICU. She has lots of bright yellow and pink tulips in vases for someone. One of the staff delivers one of the vases to me and tells me it’s from the Attending Doc. She bought them for all of the mothers on the floor for Mother’s Day. God bless her heart. I am almost in tears now. I have told Dear Son for years that my two favorite things are flowers and little boys. He would always laugh at me. I find the doc and thank her. She says, “I am sorry you have to be here on Mother’s Day but I wanted to bring you some flowers and wish you a happy Mother’s Day”. I couldn’t think of a nicer thing to say to a mother today. This woman hit the nail on the head.

I spend the day praying. Actually, it was more like begging. I begged the Lord not to take Dear Son on Mother’s Day. Of all the days to take him, this would be the worst. I decide that this would be the absolute cruelest thing in the world that would ever happen to me and pray that it won’t come true. I would forever have Mother’s Day as the death of my only son.

I easily remember my first Mother’s Day when Dear Son was only six months old. He had spent three weeks at this same Big Academic Medical Center when he was only eight weeks old and Ped Neuro Doc had taken care of him. He started on ACTH therapy and had improved. I was so grateful for that. I held him in church on that Mother’s Day and tears streamed down my face as they played “On This Day O Beautiful Mother”. I loved being a mother and was thankful that he was alive. I had never felt more beautiful than I did on that day.

The Rounds occur. They tell me it’s a MRSA pneumonia. Not only that, they tell me the x ray looks worse than yesterday. I can’t imagine how much worse it can look, but take their word for it. I’ll learn later in the week that they had twelve MRSA pneumonias here last year. Seven died. Enough said. I think back to my first day at the local hospital when I asked for the MRSA screen. Why couldn’t they have put this together and figured out it was a MRSA pneumonia? Or at the very least, that they were in trouble? I am angry but let it go. Dear Son is still in big trouble.

The Attending Doc comes in to meet me and asks for the transfusion. She tells me his hemoglobin is 7.5 and they can’t stabilize the blood pressure. I tell her that I wonder how safe they are. She says they are safe but I need more information that that. I ask her if I can donate. She says that would take a few days to test the blood and we don’t have time for that. She says there is only a very, very small risk of contracting Hepatitis C or HIV from the transfusion and that they are safe. I tell her that I won the gene lottery with Dear Son and that if there was a minute chance he would get this gene mutation too. I tell her that I am not a lucky woman when it comes to this kind of thing. I ask where the blood comes from and she doesn’t know. I think she should know the answer to this question, meaning what blood bank they use, etc, etc, but I don’t butt heads with her. She is trying to help Dear Son. She explains that in her country, the doctors can just do what they feel is needed for the patients, and don’t have to ask the parents permission. In America, she says, it’s different. I wasn’t trying to be difficult, it was more that I wondered if a transfusion was really necessary. I tell her I will think about it.

Hours pass and I decide that it’s not worth it to debate this transfusion. I tell her that I’ll sign off on the transfusion and to have someone bring me the consent papers. I decide that it’s more important for him to live than to worry about the transfusion. Also, I really don’t want him to die today. Not on Mother’s Day.

Continued….Part IV-The Conclusion
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