Sometimes Less Really Isn’t More…

I remember the first time Dear Son took a walk without any assistance in the gait trainer in elementary school. He had been working on that for some time in physical therapy, however this would be the first time they would show me that he could operate the gait trainer on his own, without anyone physically touching or guiding the gait trainer. I remember how happy he was, to navigate the gait trainer a few steps in the hall of the school and how odd it was that he didn’t need me at all. He didn’t need me to hold on to the gait trainer, to steady the gait trainer or anything like that. I remember being pretty excited on the one hand and on the other, not really knowing what to do with myself. I didn’t know what to do with my hands. Usually, I would have to help him with everything and well, he just didn’t need my help. It was such an odd feeling and a good feeling at the same time. After all, it wasn’t very often that there was anything Dear Son could do on his own, without my assistance. He couldn’t stand on his own, eat, use his hands or roll over and yet, here he was taking a few steps on his own, in the gait trainer. I remember the big thing at that time, was wondering if he was going to walk or hoping that he would someday walk on his own.

I think back to those times now and find myself wanting more. I guess maybe wanting more isn’t a good way to put it, but rather, I don’t want anything less.

I remember a few years back when he lost his ability to weight bear. Then he lost his ability to roll over. Then he lost his ability to eat. And then, he lost his ability to go on long walks with me because he couldn’t keep his head up very well. We used to take long walks around the golf course where we live and we’d stop briefly at the beginning of the walk and swing a bit on the double swing overlooking the water and then again at the end of our walk. At some point, he got too heavy for me to lift into the swing and I wondered what we’d do. Fortunately, I found that he was just as happy sitting in the rocker at home after our walk.

Soon, we moved inside and he liked to sit in his rocker and look out the window after school. As he began to weaken, he’d begin to fall over to his right side and nearly tumble out of the rocker. He has no use of his hands or arms so it’s not like he can catch himself or anything like that, so he really needs to be watched carefully. Soon, it was no longer safe to let him sit there and look out the window. When he could no longer do that, I moved the rocker over near the dining room table, where he’d sit and listen to the country music on his iPOD with his head lying on the table. When he’d get tired, I’d take the hoyer lift and take him into his bedroom. But some days, he’s not even able to do that. Today, he tried to lie his head on the table, but he couldn’t sustain it. After a few attempts, I took the hoyer lift and moved him into his hospital bed, where he could lie down and listen to his music. He was asleep in less than five seconds.

Sometimes in life, we want too much and we find out that less is more. And sometimes, less is well, just less. I feel like I am stuck in a long goodbye and I don’t like it. I want more. A lot more.

Note: Dear Son is sixteen and suffers from a progressive neurological disorder and intractable seizures due to a random mutation of the ARX gene.

Dream Mom Appears on Reuters.com

I just found out that my post, "When Good Manners Go a Long Way: In Support of Etiquette- Based Medicine" was published on Reuters.com yesterday in the Health Section. I am very excited. You can view the link here:

http://www.reuters.com/article/blogBurst/health?bbPostId=B7rkpR7712nbCzD2wfQWdJF3GCz9CpgnL17JavCzAxsMd1gq0GL

In 2006, I was invited to be part of Blogburst, the world's largest blog syndication network in the world. Blogburst is operated by Pluck Corporation, who formed a strategic alliance with Reuters in 2006 to syndicate all third party blogs as part of their news and information service. It has taken some time, however as part of my agreement, my blog posts are now getting published at least once a month in major media outlets.

When Good Manners Go A Long Way: In Support of Etiquette-Based Medicine

I was reading the Grand Rounds today, when I came across this post written by, “In Sickness and in Health.” This blogger wrote a post in response to an article she read in the May 8, 2008 New England Journal of Medicine titled, Etiquette-Based Medicine by Michael W. Kahn, M.D.

“The article opens with the question: "Patients ideally deserve to have a compassionate doctor, but might they be satisfied with one who is simply well-behaved?" The author goes on to say, "A doctor who has trouble feeling compassion for or even recognizing a patient's suffering can nevertheless behave in certain specified ways that will result in the patient's feeling well treated.”

The author goes on and outlines a checklist of physician etiquette for the clinical encounter and gives a possible checklist for the first meeting with a hospitalized patient.

"The basic manners include:

1. Ask permission to enter the room; wait for an answer.
2. Introduce yourself, showing ID badge.
3. Shake hands (wear glove if needed).
4. Sit down. Smile if appropriate.
5. Briefly explain your role on the team.
6. Ask the patient how he or she is feeling about being in the hospital.”

The blogger, “In Sickness and in Health” argues that etiquette is not quite enough. I am not going to argue with that, but rather, I’d like to offer a different perspective in support of the article. In the article, the author states that perhaps “patients may care less about whether their doctors are reflective and empathic than whether they are respectful and attentive.”

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Dear Son has had over fifty hospitalizations since he was born. Most have occurred at Big Academic Medical Center, a large teaching hospital twenty five miles from our home. Over the years, we have had a few hospitalizations that have spanned over thirty days. One in particular was quite stressful and happened a few years back. At that time, Dear Son was vomiting severely and they couldn’t determine what was causing his issues. He had a new g-tube installed in May of that year and had hospitalizations for vomiting in September, October, November and finally December/January of that year.

During that time, several specialties were called into see Dear Son, many of whom I had never met. In addition to the attending physicians, I might have other physician specialties consulted and see them along with the residents and fellows as well for each of them. I stayed with Dear Son twenty four hours a day and the number of hospital personnel that entered my room on a daily basis was over fifty. During that time, I spoke with the Pediatric Attending Physician and told him that each of the residents/fellows needed to identify themselves and their specialty when they came into the room. He agreed and said that he had the conversation with them on several occasions however they still didn’t comply. They didn’t seem to grasp the importance of it. More often than not, they also incorrectly assumed that if they identified themselves once, that I would remember each of them and their specialty no matter what time of the day it was. As the days wore on, and the lack of a definitive diagnosis went on, I became weary. I soon began asking each and every person, their name and their specialty and asked for them to identify themselves when they came into the room. Only then would I answer their questions. (The reason is that once I knew what their specialty was, I could frame my response and better answer their questions.) It would have been an easier hospitalization for me if they had done that.

It’s amazing how those small acts would have had a positive effect on that hospitalization. In addition, I think it’s just good manners for any hospital personnel to do that. During this hospitalization, I was “on” twenty four hours a day. It was hard. Two of the things that were particularly hard for me were: 1) having to talk to someone the minute I woke up and 2) not having fifteen minutes to eat uninterrupted. On one occasion in particular, prior to building the new hospital, they had showers in the room that had a curtain that went around you. I was taking a shower when a nurse came in and asked me several questions regarding Dear Son. I was “in” the shower for goodness sakes! I also remember one day, asking for fifteen minutes to be by myself to eat. Normally, it’s not a big deal when I am there to talk to physicians or anyone, even if I am eating. However, when you are there for weeks at a time, it can be very challenging to be “on” twenty four hours a day. I remember asking a nurse for just fifteen minutes by myself “once” in thirty days. I think the reason it was so hard was because I am not an extroverted person. If I would tell most people that, especially those that know me, they would laugh however it’s true. I am friendly and speak to people however on a scale of 1 to 10, with 10 being extroverted and 1 being introverted, I am about a 6. I need some time to myself every day without anyone around. I crave it. Not having any for weeks, well, that was very uncomfortable.

That hospitalization cost $172,000 and the total for all of them that year exceeded $250,000. The hospitalizations were a result of a medical error by a surgical nurse placing a too large feeding tube in him that not only blocked the stomach opening (hence the vomiting) but caused a ton of abrasions. He had a Vagus Nerve Stimulator implanted at that time and the surgical risk was increased due to the risk of vomiting during the operation. He lost over 10% of his bodyweight and became comatose. On top of that, there was confusion over the hospitalization and our normal doc thought he had been released and I couldn’t get nutrition to authorize a feeding over the Christmas holidays. It was a disaster and the worst hospitalization to date. The repeated hospitalizations weakened Dear Son. He was not able to go to school for nine months following that hospitalization and the tenth month could only attend part time. I could not work during this time since I needed to care for him. He slept almost twenty four hours a day. He lost his ability to weight bear and never was able to weight bear again. He walked on his knees prior to that hospitalization and never walked again after that. I lost a lot of him during that year and never regained it. Today, people assume that since he isn’t hospitalized a lot, that he’s doing well. I remind them that he’s lost a lot of skills over the last few years. If they had asked me how I felt about the hospitalizations, I could have told them.

Etiquette isn’t only nice, sometimes it means a lot. I have learned a lot from Dear Son and over the years, when the lifestyle of caring for disabled individual has worn me down, simple acts of kindness mean a lot. Somehow, stating your name and your specialty and title doesn’t seem like a lot to ask. And that hospitalization, it happened in 2004; I still remember the fact that they didn’t introduce themselves and how I was treated. That’s four years after the hospitalization occurred. Maybe Dr. Kahn is on to something. Thank you Dr.Kahn, for thinking of me.


Note: Time to celebrate-this is my 250th post as Dream Mom!

The picture is of Dear Son at the playhouse last month when we saw the children's play, "The Wizard of Oz" hosted by the local Lions club.

A Mother's Day to Remember

I remember my first Mother's Day, standing in church holding Dear Son close to my heart. The choir was singing, "On this Day O Beautiful Mother." Tears were welling up in my eyes. Dear Son, nearly six months old at the time, had already been through two hospitalizations, one, the first week of life and the second, nearly a month long at Big Academic Medical Center. It was there that they diagnosed the seizures and started him on ACTH therapy. ACTH therapy was a type of steroid injections that were given into his little thigh on a daily basis, as I recall. The home health agency had made a mistake and sent adult needles to our home. We had been through so much in such a short amount of time and yet, it was just the beginning. What never changed was my love for Dear Son. Although my life for him has been different than what I had dreamed for him, and also for me, it has been no less rewarding, maybe even more.

In 2006, he suffered not one but two MRSA pneumonias and nearly died. After the second one, he was no longer allowed to eat by mouth and has remained on g tube feeds ever since. I've fed him on holidays every so often but the reality is that he can no longer tolerate any food by mouth, even then. I miss cooking for him. I hear mothers complain about not wanting to cook or not having time to cook for their families and I envy them. If only....

And yet, I could go on and on about what he can't do, the fact that he can't walk, the fact that he can't sit up on his own, or use his hands, or talk to me. I wish just once, he could magically talk and I could hear his voice and hear what is on his mind. We fantasize about that sometimes. I'll tell him I wish he could talk for just one day and he smiles. I tell him I probably wouldn't say anything since I'd hate to miss a even a second of hearing his lovely voice, if for just a day. His eyes light up as he envisions the fantasy. I always end up telling him that even if he can't speak, it would never change my love for him. He knows that deep in his heart. I have no doubt about that.

And yet, I am enormously blessed. I have his beautiful face to kiss every morning, I have his spirit and his smile. To know he is happy, means a lot to me. He has matured over the years and I am blessed to have seen him do that. If he were not disabled, I might not know that all of the things we normally expect, like walking and talking are blessings.

I know my time with him is limited. I know that it won't be long before the ravages of his progressive neurological disease take over and yet, I am thoroughly enjoying today. I remember when I was thirteen and my father died. I remember how it felt and how everyone in our house cried for three weeks. Every night, I would hear my mother, my sister and I cry over the loss of my father. I know that when I lose my son, it will be worse.

And yet, I came awfully close to losing him to the MRSA pneumonia in 2006. And today, I'll reprint the post of that frightful day. That day, will always be a reminder to cherish each and every moment with him, no matter how small or insignificant those moments may be.

To remember that time, I bought the tea set you see in this picture. I purchased it in the gift shop at Big Academic Medical Center as a reminder of that event. It reminds me of the hardship and the blessing of that Mother's Day, when I came so close to losing him. I also decided to start a collection of tea sets after that.

Today, Dear Son and I will go to a family cookout and celebrate all of the mothers in our family. It will be a great day, because I have my son. And before I eat, I will say a prayer for all of the mother's who lost their sons and daughters this year, for they will need it.

God Bless you all. Have a Happy Mother's Day.

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Part III-A Mother’s Day to Remember (Originally published June 1, 2006)

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. It reminds me of when he was in the hospital when he was a little boy. I could never hold him in my arms to my chest with the IVs in him and the very first thing I would do when they took them out was to give him a full body hug. 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. I remember the calendar that was sent home from school each day in May where it summarized the highlights for this month. Mother’s Day was on the sheet so I knew Dear Son remembered it. They would always send home these little gifts, that supposedly Dear Son made for me. I would open them and be excited about them and tell him how much I loved them. He would beam ear to ear when I did this. He had an excitement about him that was absolutely contagious. 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. He makes my day.

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 the 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 explain that there are only four children to date in the world with Dear Son’s gene pattern. 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. She says she checks the box off to order the blood and it arrives. 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 explain to her that it would help if the pc was working in the room. I could have googled transfusions and had a lot of my questions answered and not wasted her time. 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

The entire series on the MRSA Pneumonia is here:

Part I-How it Began

Part II-The Rescue

Part III-A Mother's Day to Remember

Part IV-The Conclusion

The Purpose Driven Life

The home sat off the side of the road, it’s well manicured lawn fresh from a recent mowing and by all appearances, this was a nice place. The morning was crisp and I was early, all good by my own accounts. This was my first visit to a potential day program for Dear Son and I wanted to make certain I wasn’t late. I debated taking the tollway but decided upon the back roads to get to the place. Nothing against the toll road but sometimes the back roads are really pretty in the spring and it gives me a good idea of the road the bus might take to bring him here. Or not. I have to remember, the school doesn’t transport him here, that would be my responsibility.

I waited for the Vocational Counselor to arrive. At Dear Son’s last IEP (Individual Education Plan) they pushed for me to pursue a day program for Dear Son. Legally, he can stay in high school until he is 21, and they would have to provide transportation for him as well as all expenses for his therapies, as they do now. They are pushing for all of the special needs teenagers to leave high school after four years and pursue a day program or vocational training. I reminded them that unless I found a program that Dear Son would thrive in, that he would remain in school.

I stayed in my car and looked a little closer at the facility. On one end was the residential program, where the children and adults lived and the other end was the day program for the adults. I had heard of this program from Dear Son’s Orthopedic Surgeon, who serviced these children’s needs for the last nine years via the clinic. He felt the children were very well cared for compared to other places he’s been.

I looked at the windows, the white blinds all closed. As I peered up and down the large horizontal structure, every blind was closed. Somehow, that didn’t seem friendly to me. The building sat next to large radio towers, another negative. I wouldn’t buy a home near them and it didn’t seem safe to have them within fifty feet of the structure. As I looked over the lawn, I wondered what the backyard looked like. That would be important as that would be where the children would go when they went outside. I was hoping they might have a wheelchair swing. Dear Son would like that.

The Vocational Counselor arrived and we went inside. We signed in and waited for a while before someone arrived to greet us. I looked at the signature page and counted the signatures for April-only six so far this month. I looked back at February and March and saw that there were only a few every month. Apparently, no one visits much. We waited in the lobby and watched the reception desk, which appeared to be part of the medical clinic. A young woman sat in a tilt wheelchair, her feet bundled up in an odd type of cloth shoe that looked more like a slipper, as if to cover some sort of casting. I imagined it was Dear Son sitting there and wondered how long they would let her sit there alone, staring into space. I tried to peer into the room, to determine if it was a medical room or if it was a residential room. I saw what appeared to be a dresser of sorts which made me think it was her room. But no one came. Finally, after ten minutes or so, we were greeted by a nurse’s aide who phoned the woman we were scheduled to see.

She came to greet us and and walked us down the long corridor to her office. I peered into the residential rooms as we walked by to get a closer look. There were three beds to a room, each with it’s own dresser. There weren’t any sheets on the bed, but there were comforters strewn at the bottom of the beds. There was a single four drawer chest next to each of the beds. Most had no personal effects of any kind. I saw one boom box. I imagined that without any personal effects, there weren’t many visitors.

We chatted briefly with the woman as she asked for Dear Son’s information. She informed me that he was by far the largest teenager here, including the adults. At 164 pounds, well, they didn’t have anyone that size. I explained that I was here to visit the day program and was not looking for residential placement. This would actually be the first residential home I had ever visited in person, so I was certainly curious.

We walked down the hall and the first place I saw was the living/family room. It looked nothing like the pictures on the website. The website showed a bright, cheery, light filled room that looked like a nice place to live. The family room as I saw it, looked like it was rarely used. There wasn’t any seating of any kind however there was a large screen t.v. and some bookshelves on the other side. The woman told us that this was where the kids were every night. They watched t.v., got massages, played games, etc. Her words clashed with the surroundings because I couldn’t figure out where anyone would sit.

We walked down the hall and to the right was a small room with a sign outside the door that said, “Family.” I asked what the room was for and she said it was so the family could visit with the residents and have some privacy. I asked why they couldn’t visit in their rooms and she said they could. I didn’t believe her for a minute. Something just wasn’t quite right.

As we walked down the hall, I peered into the other rooms. No sheets on the beds. We stopped at this one room and she described all of the activities that took place there, when I interrupted her to ask some questions. To me, I needed to understand just who lived there and how they took care of them. There were 57 people there-1/3 were peds and the rest were adult residents over the age of 18. None were ambulatory. I wanted to know who placed them there-the family or the state. Secretly, I hoped the state had placed them there since it seemed so dismal that a family would do that to them, however I would be wrong. Of the fifty seven, fifty four were placed by their family and 3 by the state. Only one had behavioral issues. That was important to me since I was trying to find a Day program that had kids similar to Dear Son-lots of physical and mental disabilities but no behavioral issues. As I asked more questions, it appeared they were 99% public aid funded and hadn’t had a funding increase in eleven years. They did however had a group that financially supported them and helped them pay their bills.

We talked some more and as she continued the tour, we saw the bathrooms. She explained they were bathed every evening and had a sponge bath every morning. I thought that was a lot of work. As she talked some more, I began to wonder how many aides they had to assist them with their tasks. Turns out they have one aide for every seven children. That’s a lot of work to bathe them, get them dressed, feed them and get them off to the Day program every morning. I am tired just taking care of Dear Son! And to change diapers on top of all of that, that seemed enormous. The Vocational Counselor chimed in that most places had one aide to every ten to twelve adults as if that should make me think better of this place. I didn’t. And then I asked about the sheets, and why there weren’t any on the beds. She said it was housekeeping responsibility and pointed the workers out, as we walked down the long corridors. The only problem is that there weren’t any linens in sight. Anywhere. As we continued the tour, I was getting physically ill thinking about this place. I just wanted to sit down before I fainted. Fortunately, there were handrails. I couldn’t imagine Dear Son having to live here. It seemed so very cold and impersonal. I didn’t buy the fact that one person could take great care of seven kids/adults with these kinds of needs. I know I couldn’t.

We saw the day program which was more of the same. Thirty adults in a room, every wheelchair tilted back, all of them expressionless while three adults tried to conduct a lesson of sorts. I knew then that her comment about the visiting room for “families” was a lie because none of these kids knew what was going on so there’d be no reason for a special room for privacy. All of the adults in the wheelchairs, were all the same size, the same height and almost the same weight. I don’t think any of them exceeded 100 pounds. I didn’t think it seemed normal that none of them would have grown to a normal adult height and weight. I can see now that Dear Son would have been a giant of sorts. But he’s not a giant, he’s just a normal, healthy, adult teenager. As I looked around the room, I saw every adult, tilted back in their wheelchair, expressionless with nothing to live for. I imagined to myself that if Dear Son were here, he would be like that in less than six weeks. If you don’t nurture these children, they will die, first in spirit and then in the physical. I knew then that he would never come here. We walked back to her office and she told me about the waiting list for the program. I took the application and left, knowing I would never fill it out. I felt guilty for wasting paper.

I left the house, feeling physically ill. It was such a stressful day, seeing them like that. To make matters worse, I knew that there were residential facilities far worse than that. And here I was just looking for a day program! The whole experience just solidified what I always knew, that Dear Son would never, ever, step foot in a residential facility.

Later that day, I got Dear Son off the school bus. The bus aide asked me how the tour went. I described it to her and told her what I saw as Dear Son listened. After she left, I told Dear Son that I was just looking for a school type program for him after high school and that he was always going to live with me. Dear Son leaned over and gave me a lick (kiss) on the hand. It was a warm and sunny day, so we sat outside, talking and listening to the birdies, him in his wheelchair and myself in the rocker. As we sat there, we talked about the beautiful birdies and the songs they sing for him. While I talked to him, he continued lean his head over so I would kiss it, which is his way of giving me a kiss. Between that and licking my hand, he must have given me thirty kisses. You can’t tell me these kids don’t get it. As I came inside, I felt intense pride in what I do for him on a daily basis. His bed is always made, his sheets are fresh, he gets his meds on time and he starts and ends every day a happy kid. He is loved and he knows it. I am blessed. And it’s Dear Son who blesses me. He is my purpose. And when you live your life with the right purpose, you live a life with no regrets and a life of immense pleasure.

Discharged Today

Dear Son was discharged this afternoon from the hospital. The gastroenteritis ran it's course and he appears to be back to his normal self. He should be able to return to school tomorrow. The best part is that I finally got some answers and we were able to rule some things out.

His pediatric neurologist came in today and felt that the scopolamine patch contributed to Dear Son's vomiting issues due to it's effects on the central nervous system. He made some changes to the amount/volume of the formula Dear Son is getting and we'll see if Dear Son does a little better after that. If not, we may need to change the rate at which I feed him via the feeding pump. I felt much better after this since I wasn't comfortable attributing all of his issues to the gastroenteritis simply because both of the vomiting episodes that preceeded each hospitalization occurred immediately at the end of his feedings. I am glad he was able to figure this out.

Shortly thereafter, the nurse from the g-tube clinic came by and he confirmed that the Mini Button that was recently installed appeared to the be the right size and should not be causing any obstruction. (As I previously mentioned, Dear Son had obstruction issues related to a g-button several years ago.)

Upon returning home, I googled the scopolamine patch and found this article indicating decreased absorption of oral medications due to decreased gastric motility and decreased gastric empyting. Knowing this will make it easier to problem solve from this point forward. Should Dear Son continue to have issues with the volume of the formula he is getting, we can always switch from two cans of the current formula to one can of a higher calorie formula to reduce the volume in addition to decreasing the rate should that be needed.

Finally, I was glad that Dear Son didn't have a Nissen. If he did, he would have been even more uncomfortable due to the motility and decreased emptying since it would have made it more difficult for him to vomit.

Hopefully, he'll sleep well tonight and things can get back to normal. There was a high point to the hospitalization however. Last night, Dear Son was sleeping while I was reading a book. I glanced over from time to time watching him sleep when I looked over and saw him smiling in his sleep. It wasn't just a grin but a great big smile. It was beautiful to see and even more beautiful to know that he was happy. It must have been a pretty good dream because he was smiling for quite a while. The last time I saw him smiling in his sleep was when he was a baby. I can't begin to tell you how much I loved that moment.

Back to the Hospital

Over the weekend, Dear Son remained lethargic and continued to have watery, loose stools every one and a half to two hours. He was exhausted and was unable to get out of bed. On Sunday, his abdomen seemed rather hard after his feeding and I contacted the Pediatrician on call thinking that his abdomen did not seem normal to me. They told me it was probably fine and we agreed that I would call in the morning and come in. A few minutes later, he vomited his formula rather forcefully so I called the Pediatric Neurologist at Big Academic Medical Center and he said to bring him to the hospital. Dear Son would vomit another five times in the next hour.

They admitted him on Sunday and the Attending Doc (Peds not Peds Neuro)admitted they probably released him too soon. They treated him for dehydration and I was fortunate to catch it early. They stopped all feedings and he has been on IV fluids only. Today, we began adding some things back and are checking to make certain he does not have a stomach motility issue along with the virus (There are motility issues related to his genetic mutation.)The Attending mapped out a plan however there was a snafu with the nursing staff today so the plan did not go as written. (I had to work today so I was gone for a few hours and when I returned I noticed that things had not gone as directed.) I had hoped he would be released tomorrow but we'll see. A stool sample was obtained previously however the results are still pending. While it is doubtful that would change the direction of the care, it would be good to have the confirmation.

A few years back, he had issues with a too large feeding tube that blocked the stomach opening and recently he switched to a larger size, although it was still a low profile balloon. We are trying to get that reviewed so we can rule that out.

While most likely, it was simply gastroenteritis, we need to err on the side of caution. Because of the vomiting, I wanted to get some confirmation first that the volume or amount of the feeds he was getting was fine and secondly that the volume or rate that it goes in is not too fast. For example, was there a problem that there were too much fluid in the stomach because it was pumping or going in too fast or was it a motility issue of the stomach not emptying or finally was there any kind of obstruction. I mentioned those to the Attending based on Dear Son's history and she agreed that we needed to rule some things out.

I will attempt to keep you posted although it is very difficult since I have very limited internet access and the access I have is rather clumsy at best. I am hoping there aren't a lot of errors in this post since I am only able to get a partial view of the screen and can't see the entire text.

Hospitalization and Botox Update

Dear Son was released from the hospital yesterday for treatment of gastroenteritis. He came home from school on Tuesday and seemed fine and was actually quite happy. He had a late supper (via the g tube). He was half way through his dinner when I had left his bedroom for ten minutes. When I returned I had noticed some white foam around his mouth and thought he might have had a seizure. I turned on the light to investigate when I noticed he had vomited severely (through his mouth and nose) and was lying in vomit and an enormous volume of liquid stool (the amount is beyond words). I became quite alarmed at the sheer volume of the situation since I had never seen anything quite like it. I paged the doctor immediately thinking something terrible had happened. While waiting for the return call, I cleaned everything up. (This was a feat in itself since I couldn't lift him off the bed without the hoyer lift. This meant, I had to figure out a way to do the entire bed change, clean up and new sheets without lifting him out of the bed.) It took a half hour. I was concerned he may have aspirated since he was on his back when I came into the room and I had left him propped on his side. When Dear Son vomits, he tries to problem solve by rolling on his back which is dangerous.

No sooner than I had it cleaned up, he began to vomit more severely and I called 911. We went to local hospital and then transferred to Big Academic Medical Center. The concern was aspiration and dehydration. I was up the entire night on Tuesday and it didn't feel very good. Fortunately, a fever never developed so he was taken off IV fluids and we were able to come home last night. They assured me it would not get any worse.

Since we got home, he has continued to lose a lot of water via his bowel so my main concern right now is dehydration. I am giving him more fluids than normal. He seems a bit warm so I am watching for any fever.

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Botox Follow Up

For some time now, Dear Son had been experiencing severe night time choking. In January, we tried botox injections for him however the result was short lived. It lasted around three weeks and the effects tapered off over time. Typically, they'll try the botox injections every four months if they work. Since the effect did not last until the next injection time, the ENT nixed a second attempt. Our next step would have been removal of the saliva glands and if that didn't work, a trach might be necessary. I really didn't want that to occur.

I spoke with Dear Son's Pediatric Neurologist regarding the issue and he suggested we try a scopolamine patch. Dear Son has been using it since April 1st or so and the results have been downright amazing. The patch worked right away and stopped nearly all nighttime choking. Prior to the patch, Dear Son might spend the entire night choking so severely that he didn't get much sleep. The patch reduced 99% of his nighttime choking and he's been sleeping very soundly ever since. He sleeps so soundly and quietly now, that it took me a few days once he got the patch because I didn't hear him breathe at all. It's been a few weeks and now that he is getting some really good sleep, he seems much happier and more like his old self. He came home from school on Tuesday and gave me a ton of kisses while sitting in the rocker. (He leans his head over towards mine for me to give him a kiss or if I put my hand near his mouth, he licks it, that's how he kisses.) I can't get over the dramatic transformation.

Interestingly enough, the insurance company had initially refused approval of the botox and had recommended scopolamine. The pediatric ENT had some conversations with the insurance company and explained to them that scopolamine is an adult prescription and not recommended for children. He explained that Robinal was the pediatric equivalent of scopolamine. We had tried Robinal however it did not work for Dear Son at all; the fact that the scoplomine patch working is fantastic! We are lucky to have such a good pediatric neurologist. In addition, since Dear Son is sleeping well, I am finally getting some sleep.

Removing the Wig

If you are a Good Morning America viewer, you saw Robin Roberts announce her decision today to remove her wig and appear on the air with her nearly bald head. Robin has been battling breast cancer for a few months now and detailed her struggle on GMA. As part of that reveal, she chronicled her decision to shave her head when her hair fell out, then appeared in a fashion show in February without her wig and finally appeared today with her own hair, now that it has started to grow back. In doing so, she made a comment somewhat to the effect that her hair represented the life she was holding on to and not where she was now. The statement was in many ways profound.

One of the most challenging aspects of caring for Dear Son, at least for me, was giving up my career, many years ago to care for Dear Son. Over the years, it was a struggle. It was not enough to manage his declining health or his loss of milestones, but without a career, there was never really enough money left to do much of anything so along with the career went any kind of goals. Because I loved what I did, I found giving up that life to be very difficult. It was hard not really fitting in anywhere and working menial jobs so I could care for him. The boredom level was extremely high and I felt punished somewhat, that because we don’t have daycare in this country for the disabled, that I was forced to live this life.

Earlier this year, I had the opportunity to attend a black tie event for the Respite House. It was a lot of fun planning for the event and getting dressed. Earlier that day, I was busy caring for Dear Son and happened to change a record number of diapers. I remember thinking about how nice it was to have a corporate type event to look forward to that evening and to be able to get dressed up and go out. At the dinner that evening, I remember the food and how good it tasted. It reminded me of the many corporate dinners I attended. Part of my job was to entertain clients so it happened fairly regularly that I would take them to dinner and an event, so eating out was a pretty normal part of my job. I’d travel to different cities and always managed to get in some personal time each time I went out of town. In addition to the client travel, we’d have our department meetings in some fun locations. As the evening went on, I met a lot of wonderful people. It was a really fun night and during that time, I would slip back into the Corporate world that I left behind, if just for a few minutes. Ironically, as soon as I’d remember back to a corporate event, I’d shift my mind back to Dear Son, as if the two could never really co-exist in the same evening, let alone the same event. During the fundraiser, they showed a clip of the Respite House that involved many of the nursing staff caring for the children. It was many of the same duties I did at home. It felt odd to be sitting at the fundraising table, when I was really a caregiver, as if my dirty little secret would be revealed anytime soon.

Make no mistake, I love Dear Son deeply. I’d never trade what I do for anything or anyone. But that didn’t mean that a part of me wouldn’t like to go back, to a time when I had a job that I loved and made a real income. In my dreams, I would often wish for a time when I could work full time and that’s part of the reason you will always hear me stressing the importance of daycare.

But something happened over these last few weeks. It was a bit of minor thing but it was huge for me. It started with the botox. As you are aware, one of Dear Son’s biggest issues was his lack of saliva control due to his deterioration. He’d choke on his salvia night after night and I was afraid he would aspirate and get pneumonia or worse yet, choke to death. The botox was great however it peaked at around the three week mark and then choking began to return. At that point, I had a conversation with the ENT over the phone about possible next steps. The next steps had included removal of the saliva glands, along with a Nissen and if that didn’t work, then we’d have to consider a trach.

I thought of the trach and was not very excited. I am rather squeamish and have a very weak stomach so the trach bothered me on many levels, one of which was how Dear Son would ever manage that and secondly, how I would ever be able to care for that myself. It would be very selfish if I had to deny Dear Son care he needed based on the fact that I had a weak stomach. On the flip side, the thought of caring for that would be very stressful. I began to have some conversations with a nursing friend of mine with regards to what a trach entailed and how it might work for Dear Son. She’s a pediatric nurse and cared for many Special Needs children, and many with trachs. I worried a lot about Dear Son being able to have a trach at all since he can’t hold his head up very well. I learned there were different types and there were things that we could maybe do to help him with this. Even though a trach might be far off, it’s always better for me to have some time to think these things through, as I don’t care much for surprises.

Once I understood how they worked a little better, came the larger decision…how would I ever tell Dear Son? Although we weren’t at the point where a decision for trach would need to be made, I began thinking about how this might play out. Typically, whenever I make a change for Dear Son, or the doctor makes a change, I tell Dear Son about it. I tell him what it going to happen, why it’s going to happen and I try to be pretty honest about it. I look him in the eye and always tell him that I wanted to let him know before it happens. I usually do this when he’s ready for bed and when we have a little quiet time or when he’s ready for a nap. I try to tell him a day or two before when it will happen since if it’s too far out I don’t want him to worry. I also make certain to include just the information that he needs and not elaborate on it too much. More often than not, he’ll lick my hand, which is his way of giving me a kiss. It means, “Thanks for telling me, Mom.”

But as I imagined the scenario in my head, I couldn’t imagine ever telling Dear Son that we were going to have to cut a whole in his throat. I could only imagine how that would break his spirit. Here is a young man who has been through a lot in his life. He has a body that didn’t work very well and a body that he spent years on in therapy trying to get it work somewhat like a normal person. To make matters worse, he ended up losing the very skills that took years to attain. And now, I was going to tear a whole in his throat. In addition, this would only present more issues for him, the panic of whether or not someone would or could help him if I wasn’t around and a whole host of different scenarios. I couldn’t imagine that.

On top of that, was how it would affect another hospitalization? What happened if he got another pneumonia? What exactly am I doing? Am I extending a life out of selfish purposes or am I really doing things to help him when he’s sick? At what point is too much or at what point is enough?

After serious consideration, I decided that I would not do a trach. I made the decision that whatever happened, it was not going to happen for Dear Son. All other factors aside, I couldn’t imagine having that conversation with Dear Son. And that was it.

After I made that decision, I was rather proud of myself. For the first time in a long time, I was able to be proactive about a decision that would potentially save or extend his life. And I felt good about it. For so long, all of the decisions were always about extending his life or doing whatever I needed to do to make him well or to make things easier for him. I don’t regret any of them. It was always very comfortable for me. They were always the right decision at the right time. But this one was huge. For the first time, I made a decision based on where we were right now, not where I’d want him to be or rather, to extend his life at any costs. I made the decision from a position of strength. By making the decision now and thinking about it far in advance, I could really explore all of the options. I didn’t feel I was taking anything away from him by not choosing to do it but rather I was giving something to him. I was allowing him to keep his spirit. I was allowing him to keep his body in tact. I was allowing him to be him, no matter what happened. And whatever happens, it will be o.k. I will love him no matter what works or doesn’t work anymore.

So today, when Robin Roberts said she was making a decision based on where she was now and not holding onto the life she had, I had to agree. For the first time, I made a decision on where we were now, not trying to hold onto the life he had, or we had, at any cost. And that felt really good. Sometimes, we have to let go to move forward. And sometimes, we have to be pushed. This time, I did it all by myself.

The Memory Keeper's Daughter

I remember distinctly the relief after my prenatal testing when I found out the baby would be “normal.” No more worrying. I don’t know what I would have done if I found out the baby wasn’t going to be normal. I mean, it’s not like I wouldn’t have the baby, it’s just that it would have been a different experience, maybe taken the fun out of the pregnancy. Back then, in 1991, having a baby with any kind of retardation seemed like a pretty big deal. It was like the “worst case scenario” of the pregnancy world. Since that time, I’ve seen some real “worse case scenarios” but back then, that seemed about as bad as it could get.

Of course, my Dear Son wasn’t normal. He wasn’t normal on day one or any day after that. He had breathing difficulties and turned blue within the first twenty four hours. He had “suspected seizures” on the first day and the journey began.

The first few years were a bit of a blur. It was a lot to learn the whole “system” of healthcare. I remember going into a school in one of the early years, when he was in elementary school. They were getting ready to transition him to the regular school system and I had asked to see several classrooms/schools so I could better understand the placements being considered. I asked to see two of the schools they were considering that had children “below” Dear Son’s level and two schools “above” his level. (When I say “schools” they were actually different classrooms although all of them were also located in different schools.)

One in particular was quite scary. It had a lot of retarded or severely delayed children there. It was past capacity and the day I visited seemed very short staffed. I remember walking in there and thinking it was like a pediatric version of “One Flew Over the Cuckoo’s Nest.” I was totally scared. There were kids running around, one was standing on his head, and it was total chaos. There were about forty to fifty kids in the room. One little girl came up and grabbed my hand and held it. I wanted nothing to do with this group, but I couldn’t not hold her hand. All I could think about was getting out of there fast. Looking back, I think there were many children with behavioral issues in addition to their mental disabilities. There were some with physical disabilities as well but I knew it was not the place for Dear Son.

Over the years, I became more comfortable being Dear Son’s mother. Make no mistake, I always loved Dear Son, I had never been around anyone disabled so I didn’t know what to do. I wanted to be a good mother but it takes a while to learn how to do basic things. Prior to having Dear Son, I never had any desire to work with Special Needs children or adults. I am not sure that I still do, however I am no longer afraid of them.

Fast forward to last year when Dear Son was at the Respite House. On our last day there, there were three mentally and physically disabled children receiving therapy in the main room. As I looked at each child, I saw how beautiful they were. I saw that first. I looked at them and for the life of me, I thought they were perfect. Although they had issues, none of that mattered anymore. I thought about that a bit and realized it took me sixteen years to get to that point. Maybe I was there sooner, who knows. But I can certainly thank Dear Son for changing all of that.

So it was really interesting to watch Lifetime’s, “The Memory Keeper’s Daughter.” It reminded me of the time, when Dear Son was born, and having a child with Down Syndrome or a disability was something no one wanted. I mean, why else are we testing for that?

As I watched the movie open, I saw the baby and thought of how beautiful she was. I remember the baby looking the nurse in the eyes when she was going to drop her off at the home. As the movie progressed and they visited the “home” it was upsetting to me to think that disabled children were given away or are still “put away” in a home. In fact, it’s still a pressure today, to think about “putting them in a home”, something I never want to do with Dear Son. The movie hit home with me and was very difficult to watch because now after having a baby with disabilities, I can not for minute, imagine life without Dear Son. During the commercial, I went into his room, to check on him and whispered, “I love you” to him.

All of this made me think about how different it is today. The internet has changed a lot of things. All of the bloggers with special needs children, especially the younger ones, don’t realize how lucky they are to have the internet. Back when Dear Son was born, there was nothing. It was much more isolated back then to have a child with disabilities. It’s not like you could “google” anything when you had an issue.

But more than that, is how time is changing. Recently, my niece and I began having more e-mail conversations surrounding pregnancy, now that she is pregnant with her first child. She is a beautiful young woman and it’s really wonderful to see how excited she is about this baby. I think she has taken a picture of her pregnant belly nearly ever day so far, or so it seems. In every picture, her face is absolutely glowing with excitement. She is smiling ear to ear and is so happy. A few weeks ago she told me she was expecting a girl. In addition, she decided to name her Gwen. She began referring to Gwen in all of the e-mails. I thought that took a bit of the fun out of things and that I always liked it a bit more when people didn’t announce the sex of the baby until it was born. I didn’t say anything though.

As the weeks passed, we continued to write. I opened one e-mail recently and she mentioned that she was no longer going to have any more tests done on the baby. She said it really didn’t matter anymore because if she found out she was having a baby with disabilities, it wouldn’t change anything. She was already in love with Gwen and nothing would change that so she figured she would just enjoy the remainder of the pregnancy. I should also mention to you that her husband has MS. And then she said something quite interesting:

“You know, I think by naming her already, it has made her a "real person" to us. Everything is Gwen this and Gwen that :) I think we have bonded with her that much more just by naming her. She's no longer "the baby" or "it," she's our little Gwenyth Faye :) That's why when the counselor was telling me about all sorts of other tests we could have done, I decided against all of them. I had the initial screening and the 20 week screening done, and everything looked fine. I have no interest in testing my blood to see if I am carrier for cystic fibrosis. I'm not the type of person to say, oh you know what, this baby isn't going to come out perfect so let's scratch this one and try again. I truly believe that God doesn't give us more than we can handle. I like to look at obstacles like opportunities.”

She went on to talk about the changes her husband made when he was diagnosed with MS and how those were positive for them. Then she wrote,

“I know at times, more often than not, it might get overwhelming caring for Dear Son, but you're so good with him and you love him so much. I have never seen you get frustrated or yell at him, not once. I'm sure you may feel frustrated at times, but it's so nice to see how you take such great care of him. You have never once acted like Dear Son is a burden on your life. I love that you are so passionate with all that you do for Dear Son. I think it is remarkable.”

As I thought back over the years, I thought that we are finally beginning to change the way people think about people with disabilities. Maybe they are no longer “challenges” but “opportunities.” Or maybe, they are just who they are meant to be, “beautiful babies.” Thank you Dear Son for showing me the way.

Designed to Sell

In July of last year, I started a business as a Professional Organizer. Recently, I completed my first “home staging” job and thought you might like to see the results.

Home Staging is a relatively new area in real estate. Home Staging involves decluttering, de-personalizing and organizing your home to show off it’s best features while eliminating the negatives. More often than not, this involves doing much needed repairs along with painting and cleaning. Most people don’t know where to start and that’s where a home stager comes in. Examples of a home stager might be: an Interior Designer, a Professional Organizer or a Real Estate Professional.

Recently, I was called to this home to assist the seller. The seller was recently divorced and the husband had removed most of the furniture and left the home with many needed repairs. She had a few real estate professionals who advised her to sell the home “as is”. I had met this client to help her organize her home office and I mentioned that this home could be fixed up and that she could get a lot more money. I’ve always had the ability to take the worst room or house and see it’s “potential”. In this case, I think it turned out quite nice.


Let the Staging Begin

For this client, I helped her declutter, organize, created a space plan for the furniture, and selected a color palette for each room. We agreed on a budget and I shopped for each room. In addition, I organized all of the kitchen cabinets and placed labels on every one as an added feature for a buyer. No more moving in and not knowing where to put anything!



The Kitchen



"Before" Pictures

"After" Pictures

These are the "after" pictures of the kitchen. The baseboards and moldings have been repaired and painted white. The floor has been updated. I made custom valences and drapes to go over the window and patio doors. I found a striped tablecloth at Target that tied in the kitchen and living room colors so I decided to use it and make the drapes and valences. I don't sew so I managed to make them all by using the finished edges of the tablecloths and then used an iron on mending tape. I measured precisely and then matched the stripes so the "repeat" was correct, much like you would do if you were hanging wallpaper. I made both window treatments, napkins and the kitchen towel that is hanging on the stove. I stayed within the household budget by doing all of the window treatments, curtain rods, rings, wood for the valences and "L" brackets for $65. You can see part of the window treatments below. I had to close the patio door drapes in order to take the pictures since the outside light was so bright. I added a matching cotton rug and fresh tulips to complete the staging. In the plant window, (I don't have an "after" picture of that.) I purchased some white pots from IKEA and planted an herb in each pot. I thought perhaps a buyer who likes to cook, might want to have their herbs in the kitchen and cook with them. I know I'd like that since I love to cook with fresh herbs.

The Living Room

This is the "before" picture of the living room. The client preferred to keep the bright yellow color on the walls instead of neutralizing it. I worked the color palette around this and chose white, yellow and brown as the colors with aluminum as the metal element. The walls and roses are yellow, the baseboards, drapes, vases and candles are white and the sofa, curly willow and decorative accents are brown. The client had the armoire in the basement and the desk in the foyer she was going to toss. It was painted a dark green. Instead, the desk was repainted and I built the wood elements of the room around the color of the armoire. I added a coffee table, baskets and side table from IKEA, along with white vases and candles. I added metallic table lamps with modern white drum shades. I chose aluminum elements in the curtain rods and floor lamp. Drapes were from Pottery Barn. I made the rose floral display in the foyer.

The Lower Bath

Here is a "before" and "after" picture of the lower bathroom. The bathroom was decluttered, organized and then "staged." I used accessories the client had in her home, just used them in new ways. The vanity was painted white and the handles on the cabinets were updated to a polished chrome.

An Upstairs Bath

I didn't have a "before" picture of this bathroom however here is one of the upper bathrooms "after" staging. All that was done, was painting the walls white, using a new set of towels the clients purchased and then adding some fresh tulips and a candle to make it nice. I chose the tulips because the green in the leaves matched the green stripes on the towels.

Delay

My apologizes for the delay in posting however I have been under the weather for over two weeks now. I am still not feeling very well and I now have an ear infection. I have been doing my best to take care of Dear Son, work and get some sleep when I can and not much else.

Dear Son just completed his Spring Break which meant over a week of 24/7 caregiving which can be a lot. I was fortunate to have his Dad split up the time with me, taking the first four days so I only had the last five days to care for him. It is a lot of work now that he is physically much larger and even more challenging when I am not feeling very well. Thankfully, Dear Son is not getting sick so that helps a bit even though his seizures have been increasing.

I suspect I will not have another post for at least a week until I can get to feeling a little better. It's hard to be creative until my head clears a bit. Thank you for being so patient.

Follow Up

As a follow up to the last post on Dear Son’s choking, I e-mailed the ENT. She is the one who performed Dear Son’s botox injections on January 22, 2008. She called me this morning however unfortunately, there aren’t any other meds to try and most likely the next step will be removal of his saliva glands and a Nissen. If that doesn’t work, a trach may be necessary however I hope that is not the case. We see her in clinic next month.

On a different note, one of the students from Big Academic Medical Center contacted me a few weeks back about conducting an interview for the college newspaper. She is a senior and has been reading the blog for over a year now. She states that she guessed it was the Big Academic Medical Center she attended based on the clues in the blog. She was doing a story on the Air Transport Team and since we have used there services several times over the last few years, she was interested in interviewing me. The story was supposed to print a week or so ago and she was going to send me a copy however I haven’t received it yet.

On another publishing note, my blog was published in a Big City newspaper. As you may recall, I was invited into the Blogburst Network in November of 2006. BlogBurst is the world’s largest blog syndication network.* Once you sign a contract, any of their publishers can view your blog and print your content. Recently, a Big City Newspaper published my blog in their on-line edition. You can see about it here. Ironically, it was the same post that I submitted to Newsweek’s “Your Turn” a few weeks ago.

But most of all, I’d like to thank you. It is your support that is always a pleasure to us. The comments are always so beautiful.

*Note: Pluck Corporation operates BlogBurst, and distributes the content to media sites and newspapers around the world. In 2006, Reuters formed a strategic alliance with Pluck Corporation, to syndicate third party blog content as part of Reuters news and information service. Under the terms of this agreement, Reuters will offer BlogBurst’s syndication service to thousands of its media customers worldwide including The Washington Post and the Gannett newspaper chains, among others.

Dear O'Son

Happy St. Patrick's Day!

Dear O'Son is all ready for the holiday today. It took a while but I managed to get a smile out of him. Yay!

The last few days have been quite challenging. Dear Son started having more seizures lately and when I couldn't get them under control, I called the pediatric neurologist. The medicine change helped the seizures however his choking increased significantly at night (one of the side effects of the meds is increased drooling) due to the increase in saliva. This is compounded by the fact that he is not able to clear his airway very well. He's fairly weak and has great difficulty coughing to clear the airway; at best, he'll simply yell out to clear it. I have elevated his hospital bed as high as it will go however it still isn't enough to help much with the choking. As a result, he is choking most of the night on his saliva.

The botox injections we had on January 22nd peaked around the three week mark and were less effective as time went on. He was scheduled for a second injection on May 6th however it is clear he will not be able to make it until then. I had scheduled another appointment in April with the ENT to discuss possible next steps-removal of the saliva glands and a Nissen (he did not have the Nissen when his g-tube was installed in 2004). I suspect that is where he is headed based on the failure of the botox.

In the interim, I'll speak with the ENT today to see if perhaps there is another drying agent or medication that he could use to assist in the reduction of saliva.

Winning Ugly

I’ll admit Dear Son’s inability to process his food a few weeks back threw me for a loop. I know it shouldn’t, I mean, it’s not like he’s been eating or anything. It was just the realization of another milestone in his downward spiral was achieved, if you call it that. Kind of like walking downhill and then slipping on the ice and nearly falling. You get hurt trying to stop the fall and then you realize what could have happened.

It’s a little more fun on the other end, when they are doing things to get “to” a milestone. Like maybe standing for the first time, even in a stander, now that’s moving forward. But the whole tasting thing, and not being able to eat, was just a reminder that there were ugly days ahead.

I remember lying him down that night to hook up his feeding tube. The cat walked by and I thought of how odd it would be if the cat were hooked up to a feeding tube or had a g-tube. It would be weird and we just wouldn’t do it for a cat. But somehow, it seems like a pretty good idea for our kids. After all, it’s a stop gap method for them. I remember we did it because Dear Son was having difficulty taking his seizure meds. They were mixed with food and he had so many of them that it altered the taste of the food and he no longer wanted to eat the food. Once that happened, he’d have more seizures and eventually he needed to get the g-tube, which solved that issue. It wasn’t until the MRSA pneumonia that he went to g tube feeds.

This whole deterioration piece is not fun. The botox injections, that were to assist with the choking at night, peaked at around the three week mark. For the first three weeks, it was great. Dear Son slept well since he was no longer choking through the night. It never seemed to impact his drooling though. After the three week mark, things went downhill. There are some nights that he has a pretty tough time. He’ll yell out the entire night and be exhausted by morning. It’s not every night but it happens enough. I am back to elevating the bed every night again. True, there were benefits to the botox injections, such as he’s not choking as severely as he did before, and for that, I am thankful.

But I ask myself, after the whole tasting incident and the realization that he’ll never, ever eat again, what’s next. His paternal Grandmother says to me from time to time, “that there is nothing to look forward to.” She would go on and on saying how Dear Son has nothing to look forward to and then sometimes that we, his Dad and I, had nothing to look forward to. For the most part, I just listened and it never really bothered me because I was so excited just to have Dear Son around for another day. I know that might sound silly but I am so thankful that I get to spend all of these days with him and I know that’s a blessing. I am glad I got to see him mature into a man; I am happy that I saw him grow up. I absolutely love seeing him smile. It really makes my day. But his inability to do anything more than taste his food changed all that. I knew then that we were headed backward. There was no more going forward. Ever. And that’s when I realized that there wasn’t much more than ugly days ahead.

It’s getting a little harder for him to get through his day. I work hard in the morning to get him ready for school and to get him to smile. I try to do and say things to make him laugh. More often than not, I might be lucky to get a smile out of him. He seems exhausted. After school, is worse, in some respects. He gets off the bus and looks like he’s been beaten to a pulp in his wheelchair. There are no smiles, his head is down and he sometimes has slept on the bus. He does perk up once he’s inside, and he’s happy to sit in a rocker for thirty to forty five minutes, but most of the time, he sits in his rocker listening to his music with his head on the table. After that, I take him in to his bedroom and he falls asleep the minute he hits the mattress, like within a minute. He nap until dinner time and when he wakes up, I’ll start dinner, which is Pedia Sure in his bag. And that’s it. He sleeps until morning, yelling out for diaper changes, choking, seizures or simply for me to roll him over.

I don’t know what more I can do for him. I just wish it were different for him. I mean, what’s next? What happens when he’s hospitalized for pneumonia, or something like that. What will I do? When is it enough? When do you stop? How do you stop? I just know I don’t want to be there. I don’t want to have to make any decisions. I want it to be natural. I don’t want to be put in any positions where I have to make any decisions. It’s just too hard. Because if I save him, I have nothing. He’s too tired and it’s physically exhausting to get through his day. I can see that. But if I lose him, I have nothing. What will I do? And how will I ever reconcile the fact that I made that choice? I can not do that either. Ever.

In football, when they fight hard to win, they call it, “winning ugly.” But in this case, I’d just call it “ugly.” Just plain, ugly.

When the Glass is Half Full

I remembered the face, the smile as broad as can be, the face of pure joy. It was the first time Dear Son was in a hot tub. It was as if Dear Son had died and gone to heaven. He never wanted to leave, he never wanted it to be over. He lay in the water, floating in his father’s arms, his face toward the sky, as the sun beamed down upon him. I had never seen him that relaxed or that happy as he was that day. But it was this face, that I remembered, when he smiled today. It was the same one that I saw when he was in the hot tub.

He had been vocalizing lately when I started his feeding this morning. The Pedia Sure pumping through the tubing like an electronic heartbeat, did not seem fast enough. By mid day, he started vocalizing again and looked up at me when I was in the kitchen. Dear Son, seated in his rocker at the dining room table, was listening to the radio. His head lie on a towel on the table to catch the drool that pooled near his mouth. Whenever I went near the kitchen, his head would come up off the table, as if to signal that he wanted something.

I took out his glass, a plastic cup with a squiggly straw built in the side, the only cup he had ever mastered. This cup, was the same one they taught him to use in elementary school. I had marveled over the fact that they were able to teach him to use this cup with the straw….I mean, how do you teach someone to suck up when they have very little oral motor control? You might be able to get him to suck a bit and then he never seemed to have enough suction to get the liquid all the way up through the straw. You’d have to tilt the cup so the liquid would be half way up so that when he’d suck, he’d get some liquid. I think they worked on this for at least a year and to this day, it remains as one of the greatest contributions the school system has ever made in his life.

I only have two of these cups remaining in my cabinet. The rest were tossed out and I saved another two in a cabinet I use less often, hoping I might need them again someday, knowing full well it will never be true. I suppose that would be called an emotional attachment to an object, something Professional Organizers like myself, should frown upon. If an item is not used, not loved or not needed, it should be tossed. Some rules are meant to be broken.

I pulled the glass out and filled it with some iced tea. He seems to like that on occasion, to wet his mouth. He doesn’t drink very often, as his swallowing ability has deteriorated, but he still enjoys it. I bring the glass over and sit next to him at the table. He smiles and I tilt the glass toward him. He falls to the right repeatedly and I try to support him while I tip the glass to help him get a sip. He chokes on the liquid then coughs a lot. We try again and when it happens a second time, he stops. I used to use a thickener however once he stopped eating and went to g-tube feeds, I never went back. The occasional sip, was just that, occasional.

I was taking lunch out of the oven when he looked at me again. I figured he was hungry so I quickly chopped up some food for him and mixed it with a vegetable and mashed potatoes, his favorite. His face lit up as I brought the plate over to the table. By now, he was smiling and laughing he was so excited. His face was exactly the same as it was in the hot tub, so many years ago. It was the face of pure joy. I put a tiny bit on the spoon and gave it to him. He was smiling and laughing so hard that I had to give him some verbal reminders to settle down so he could chew and not choke. There wasn’t any chewing required really, but I needed him to manage it slowly so he could swallow. Dear Son didn’t care and quickly took his face and tried to smash it into the food on his plate. That was his way of telling you to get the food in faster, to hurry up. That’s the way he ate dinner for as long as I can remember. He kept trying to smash his face in his food and I kept trying to stop him, since I didn’t want the food all over his face and all over the floor. He didn’t care. He kept smiling. I placed a small bit on the spoon again, thinking maybe I didn’t get enough in his mouth the first time, and gave it to him. Dear Son continued to smile but the food just sat in his mouth. I knew then, that he wasn’t able to chew it, eat it, or swallow it. Dear Son didn’t care though, he continued to smile and laugh, his eyes were lit up like it was the greatest day of his life. He stayed like that for at least ten minutes, the food never leaving his mouth. He never chewed it, he never swallowed it, he just tasted it. And it tasted good. I couldn’t get over how excited and happy he was just to get a taste. Not a bite, just a taste. A taste of real food.

Fifteen minutes later, the food came out of his mouth. I wiped it up and threw out the paper towel. I took the Hoyer Lift, attached the sling to it, raised him up and took him into his room. I lowered him onto his bed then removed the sling and hooked up his lunch. The two cans of Pedia Sure went into the bag and I turned on the pump. It would take one hour and forty five minutes for the 16 oz. to get into his belly to fill him up. But a taste, well a good taste lasted ten minutes.

As for me, I guess I’ll chalk it up to another lesson learned. Some people see the glass as half empty, some people see the glass as half full, and Dear Son, he’s sees it running over the top.

The Easy Button

It was 7:37 a.m. when I woke up. I had that panic when you know you overslept. I keep my alarm clock 35 minutes ahead so I was trying quickly to do the math. It was really 7:02 a.m. which meant the school bus was already outside, waiting for Dear Son. Dear Son, was sleeping soundly in his bed and there wasn’t any way we’d make the bus. It takes one hour to get him ready for the school bus and that’s if I pack his lunch bag and spare clothes the night before, which I always do. I went outside and informed them to go on.

Inside, I opened the phone book. There must be an easier way. My choices were to let Dear Son stay home from school or take him myself. Without a wheelchair van, I can barely manage getting him into the car. It takes everything I’ve got to lift him in there and if I am wrong, he’ll end up on the ground.

I opened the phonebook to see if there was some sort of wheelchair transport to take him to school once he was ready. The only listing was the local transit system bus. I called the phone number, but of course, we’d need to fill out a 12 page application, and an in-person interview prior to getting approved, and then I’d have to call a day in advance to get service and that’s if everything checked out.

I fell asleep on the sofa the night before. I woke up at 1:20 a.m. and quickly gave him his midnight meds. I usually give them at midnight on the dot but know I have an hour or so either way. Once he got his meds, and his diaper was changed, I stayed up and did some internet surfing and checked my e-mail. I went to bed at 2:30 a.m. and then couldn’t get to sleep until around 4 a.m. hence the oversleeping.

I decided to make the attempt to get him to school. I left my back brace on and got him ready and took him out to the car. I backed the car out of the garage, leaving enough room on the passenger side to get him in. The ground was icy making it risky. Hopefully, my footing would remain secure and his footing as well. Although he can’t weight bear, I can usually tilt the wheelchair totally forward and then swing him into the front passenger seat. I have to wedge my knee between his legs to do this otherwise his feet tangle when I swing him into the seat. I usually count to three before I lift him and ask him to help. If I am lucky, he’ll try to stiffen up for a second and I can make the transition. If he’s not able to do that, he’s on the ground. There is no in-between.

I got in him into the car and broke the wheelchair down into it’s parts. The wheels and the steel base they were attached to, went in the trunk and the rest of it in the back seat. His seat, the back of his wheelchair, the armrests, lunch box, backpack, sling and handlebars were all there. Sweating, I got into my car for the drive to school. In fifteen minutes, I could do this all over again. At least, I was 50% done. At school there would be help, but mainly once I got him out of the car since the male aide at school can’t lift him out of the car by himself. He’s just not used to it. To top it off, there was freezing rain coming down. Could it get any harder?

Once Dear Son was at school I went home to make some more phone calls. I learned that in addition to the transit bus, there was a bus in my county that would also take Dear Son places within a six county area for $1 per mile. I called the office, picked up an application and filled it out on the premises. To do this, we also needed to fill out another form, which required a State ID card.

I wasn’t worried about the State ID card. Our state offers an ID card but also offers a Disabled Card that identifies the person as disabled. It requires a physician’s signature, which I already had. I thought in lieu of a driver’s license, Dear Son should have an ID card, in case something happened to him. After all, he was sixteen now. And the Disabled ID card seemed perfect. If he were in an accident, they would know he was disabled. A few months back I printed the form and got the required signature so I thought I was set. Not.

To get this particular card, I needed that form but four other pieces of identification for Dear Son. One of which was Dear Son’s “written signature.” Well, Dear Son doesn’t have any use of his hands or arms so he doesn’t write. Not only that, he can’t hold a pen, hold a glass or hold anything in his hands. Nothing. There weren’t any other options listed for the disabled or those that can’t write, just a list of acceptable pieces of identification.

One of the other requirements was proof of residency. They wanted a utility bill in his name, or a lease or any of a list of bills in his name. Well, Dear Son lives with me, so we had none.

I attempted to call my local Secretary of State’s Office. Surely there was an oversight. They can’t expect that “all” disabled people can write or live on their own. The only number was a big city number and I waited on hold forever and finally hung up.

We’ll get a letter from the physician and hope that will suffice. Once that is done, we’ll get the Disabled ID card, then send in the form for the local wheelchair transit, and hopefully get approved. Once that’s done, we can go to the grocery store on a weekend or any time he’s home from school for a week’s vacation. Currently, we don’t go out of the house at all when he’s off, since it’s too risky and too hard to get him in/out of the car. I’d love to use it to go to the Arboretum this summer now that the cicadas from last summer are gone.

That was my morning. By noon, I had taken him to school, researched our options, drove across town and filled out forms, came home and made calls and did some internet searching for the Disabled ID card. I still had a long to do list of things to do for my business.

I sure wish there was an easy button. People need to think this stuff through more carefully. It shouldn’t have to be this hard to get a ride to school. I did what every other parent has done in their life, I overslept. I just wanted an easier way to get him to school.

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Note: I am sorry for the delay in posting. I had to take my pc in to the shop and didn't get this posted prior to taking it in.

On a different note, it's been about three weeks since Dear Son had the botox injections to decrease his saliva. It has worked amazingly well! His main issue was that the nighttime choking was so severe, I was afraid he would aspirate. Since the surgery, he hasn't had any episodes as severe as prior to the botox. While he still has days where he has difficulty controlling his saliva, and he still drools, his biggest issue is resolved. He is also sleeping much sounder and much better now that he's not choking through the night. I am sleeping much better too since I don't hear him choking and gasping for breath. Yay for botox!