The Electronic Medical Record-Changing the Way Healthcare is Delivered?

Monday was my second experience with the new Electronic Medical Record (EMR). Our first visit with the EMR was last year, when our pediatrician’s office converted. The nurse came in to take Dear Son’s history, walked in with her laptop, sat down and typed in my concerns. She took Dear Son’s vitals and then entered everything into the system. Very clinical, I thought. And extremely impersonal. I hated it. When the physician came into the room, he just jotted down the notes and elected to enter them into the EMR later. I was relieved.

My second experience with the EMR was on Monday. It was our first visit, Dear Son and I, with this GI physician, a motility expert. Dear Son is considered a complicated patient, by most physician’s assessment. At this stage of the game, he is out of the area of expertise for a lot of physicians, due to his diagnosis. Dear Son suffers from Cryptogenic Infantile Spasms, caused by the ARX mutation, has Progressive Motor Dysfunction and has a Progressive Neurological Disease caused by an abnormality of the dopamine receptors.

Our visit was scheduled for 3:40 p.m. We picked him up at school at 1:15 and arrived early for our appointment, allowing plenty of time for road closures. We had experienced heavy flooding in most areas, the worst in thirty years, so several highways were closed making travel difficult. We got into the examining room around 3:45 p.m. and the physician came into the room around 4:35 p.m.

Our visit started out fine. The hospital has forwarded extensive paperwork to be completed prior to the visit. This included pertinent medical history, all prior GI tests, medical history from birth to present, along with all hospitalizations, surgeries and growth records. The nurse took the medication sheet I had prepared and left the room to enter the information into the Electronic Medical Record. The physician, whom I had never met, came into the room and introduced himself, shook my hand and started the visit. He had read the history I prepared and asked a lot of questions. As we went through the visit, the physician repeatedly stopped to enter information into the EMR. When he did this, he would have to turn his back towards me, and then enter the data in the system. As he did this, he would take time to review it and edit it. Then he’d stop, turn around and continue on the visit, then stop again, turn his back and have to enter information into the system again. Our visit that started at 4:35 p.m. ended at 6:20 p.m. Over half of the time, was spent with the physician entering information into the EMR. It was distracting, it was annoying and excruciating to endure. I felt like I was having to do his job with him. The physician was personable and knowledgeable. He communicated well and when he asked me questions, he faced me and did everything right on an interpersonal level but there just wasn’t any getting around having to stop a visit and enter information into the EMR. I even asked him in the middle of all of this, how he liked the EMR. He explained that it was o.k. and that it took a lot of time, especially for complicated patients like Dear Son. He said it wasn’t as bad for the simpler cases however I would guess when you work at a Big City Pediatric Hospital, you probably don’t get many simple cases. He said that he would have to come back tomorrow and review the EMR and add more detail since he was just summarizing today. I thought of how excruciating it was to endure this. He wasn’t just jotting notes in here. It was more like the process of writing a letter; you know the kind when you sit down you think it’s only going to take five minutes and forty five minutes later, you are finished. In this case, the physician would type something, then go back and delete it, then write it again and edit it repeatedly. It was downright annoying. I wanted to take the keyboard away and just type it in myself. After all, I knew what my concerns were and I’d have been more than happy to summarize that for him.

In Dear Son’s case, his motility was affected by several issues: his gene mutation, the progressive motor dysfunction and the Scopolamine patch. The dopamine receptor problem (The progressive neurological disease is an abnormality of the dopamine receptors.) and lack of gaba (due to his gene mutation) may result in increased vomiting, GERD and gastric emptying delays (both dopamine and gaba are involved in reflux). In addition, when he is ill, his motility is worse, resulting in the bloating and vomiting issues we experienced earlier this year. The physician recommended a new gastric emptying study be completed and then after that, a possible g/j tube would be inserted. The g/j would allow us to bypass Dear Son’s stomach, where many of the motility issues are occurring. In addition, I’d have a consult with nutrition. I had many questions however it was a bit awkward trying to converse with him, with constant interruptions to enter the data.

Sometimes, I’d lose my train of thought because he’d ask to stop and enter in the data before he forgot. In the meantime, I am trying to think through the ramifications of this new g/j tube on our lifestyle. For example, the g/j tube would mean that he could only receive feedings via the feeding pump and never via a syringe since via the syringe would cause severe diarrhea. This would mean that I would have to give meds at midnight and then get up by 3:30 a.m. to start his feeding so it would be completed in time for school. This would be difficult to administer since I need to get some sleep and the sound of the pump running all night is loud and annoying, assuming I could actually get up at this hour every day, in addition to having my own business, working, and caring for Dear Son 24/7 without any nursing help. Of particular concern, was that if the g/j tube would become dislodged, I’d have to take Dear Son to the nearest ER where he would have IV feedings, until the g/j tube could be placed in him again. Without a wheelchair van, I’d have to call an ambulance for transport and this would be very expensive. It would also mean that on a day when I’d have a doctor’s appointment, it would be extremely tough-how would I administer a three hour feeding when I am transporting him to a doctor visit? While a g/j tube might be a simple solution bypassing the stomach motility issues, from a more practical standpoint, as far as I am concerned, it requires more thought as a long term solution for Dear Son.

The visit was compounded by the physician’s heavy accent, making it hard to understand him at times. I had to ask him several times to repeat things, which only added to my frustration and probably his as well. Entering all of this data in the system, along with sixteen year medical history, was time consuming for the physician.

There were signs in the examining room about how they were converting to the EMR. I thought about how expensive it must be for a facility to do this. If every visit takes 50 % longer, then a physician will see less patients in the course of a day, just to enter in the data. In addition, if I personally were seeing a new physician, and he was stopping to enter data into the EMR, I can’t imagine I would ever feel comfortable asking him about a personal concern relating to a medical issue. Entering data into the system, is about as impersonal as it gets.

I remember a few years ago, when I went to an orthopedic spine surgeon about my back issues. He had asked if it would be o.k. if he dictated during my visit. I agreed. The visit started and he introduced himself and asked about my concerns. He stopped and dictated my name and concern. Then he reviewed the x-ray, explained it to me and then stopped and dictated the x-ray results. This went on through the entire visit. I never saw this physician after that because I refused to pay for an office visit and then have to sit there while he did his work, dictating. I chose another neurosurgeon instead, one where I didn’t have to endure his dictating. It was the same experience with the EMR. I felt like I had to sit while the physician did his paperwork, even though there isn’t any paper involved anymore.

The problems with the EMR in a patient visit are as follows:

• It’s time consuming. It took 50% more time to get through our office visit when he had to enter the data.
• It’s annoying. I don’t want to sit through the data entry piece.
• It’s impersonal and critical information could be missed. If I am not comfortable talking to a physician in the office visit, then perhaps I might not share information that may be critical to a diagnosis. If that occurs, then the diagnosis could be wrong and the treatment may not be effective.
• It’s disrespectful. I don’t want to sit through a physician doing his paperwork any more than I think he wants to sit with me while I do my paperwork. If they are asking me to complete medical history paperwork prior to the office visit, then I would expect that they could enter the data after I leave the room.

From a healthcare executive perspective, the problems would be:

• It’s time consuming. If office visits take 50% more time, the physicians are seeing less patients. Less patients equal less revenue.
• It’s expensive. Not only are the docs seeing less patients, but I’ve just replaced a lower cost worker, the medical transcriptionist, with my highest paid employee. Instead of the transcriptionist turning dictations into medical records of sorts, I have the highest paid worker, the physician, performing data entry.
• It’s less personal and critical information could be missed. If the patients are comfortable and can’t bring up their personal concerns to the physicians, then the physicians make the wrong diagnosis therefore increasing medical errors.
• Some patients don’t like it. If a patient finds it annoying, they may elect to go elsewhere, therefore decreasing revenue.

As a patient, I hope I don’t encounter any more physician’s with the EMR however I know that is only wishful thinking on my part. As more and more convert to electronic medical records, I hope they give some thought on the front end to how this will impact patient care. I am certain that even if they don’t give it any thought, about the time they realize the money they are losing by having their physicians spend precious time doing data entry when they could be making money, will change everything. After all, if I were employing physicians, I’d want them performing the tasks that no other person in my organization was qualified to do. In essence, I’d want them doing the job they were paid to do. I could pay another work much less to perform data entry. And isn’t that precisely what we are doing when they dictate? We are paying for a lower cost worker, a medical transcriptionist to turn that dictation into office visit write ups. Why make a huge investment mistake and have our highest paid workers, the physicians, do a data entry task? It’s a huge waste of their time and their money. In addition, it’s doesn’t attract any patient loyalty to the organization. What patient wants to sit through this?

The EMR is just another trend towards the depersonalization of healthcare. First we had the hospitalists and now the EMR. What I wish healthcare executives would understand is that the physician is the most powerful person in your organization. The physician is why I come to your facility. I don’t come because you have nice rooms, I don’t come because you are on the best hospital list (o.k. maybe a little on that one), I don’t come because you have nice landscaping. I come to your facility because I like your physician. Your physician is who I want to see when my Dear Son has an issue. It’s who I want to see walk through the door of the hospital room when my precious Dear Son is sick and it’s who I want to follow Dear Son through his medical issues. That is why I come to your facility and that is why I come back. I don’t come to see “any” of your physicians, I come to see “our” physician. As Dear Son deteriorates, the role of his physician’s become more important. Not only in terms of Dear Son’s care but in terms of what I need as Dear Son’s mother. I don’t want a hospitalist to come into a room when Dear Son’s dying, I want Dear Son’s doctor in the room. I want him to tell me that we did everything we could. And that is the power of your physician. That’s what makes me come back.

When the Department of Human Services Cuts Hit Home-Who is Left to Care for the Disabled?

Dear Son had been sleeping longer than normal. Typically, he’ll wake up early and once I get his food started via the g tube, he often goes back to sleep. This morning was no different however he had been sleeping for some time now. As a mother, you cherish these few moments to get things done, whether it’s around the house or just taking some time on the internet but this had gone on for a while. Lunchtime came and went, but he still was sleeping. I let him sleep knowing that sometimes, he needs this extra sleep to grow. Other times, too much sleep means he’s having more seizures.

I kept checking on him and finally, around 1:30 or so, I decided to get his lunch time medicine ready and his feeding. His lunch time med is typically given around noon but I have a window of around an hour or so. Since he had been sleeping so much, I opted to give his feeding via the syringes, doing it all at once versus going through the feeding pump, which would have taken an additional three hours. After giving his feeding, I proceeded to dress him for the day. I needed to get a few things from the store, and taking him with, would take all of my energy. Our one hour pleasure walk would be forfeited today, since I would have to lift him in/out of the car four times, for a ten minute shopping trip at the grocery store. That little trip and all of the lifting of his 170 pound six foot frame, would take all of my strength for the day. Normally, I’ll use a respite worker when I have to go to the grocery store, or try to do it while he is at school. Today, being Sunday, I decide to take him along. As I dressed him, his fingers and hands began to shake. It wasn’t uncommon for this to happen and I felt it was typically seizure activity however the most recent EEG showed this was not the case. Regardless, I use the magnet on his wrist to activate his Vagus Nerve Stimulator (VNS) and proceeded to dress him.

Once he was dressed, I used the hoyer lift and got him out of bed and into the wheelchair. Although I use the hoyer lift, there is still a fair amount of lifting involved on my part. The hoyer lift gets you 80% there and the other 20% is you. Once he’s in the wheelchair, I have to lift him up to straighten him out and get his hips into the rear of the wheelchair so he can sit properly. When his tone is off, like today, this is a bigger job. When he’s having a good day, you can get him in the wheelchair with little or not lifting on your part; this is similar to the diagram in the manual. The worse he is, the harder it is to position him in the chair without additional lifting. I am sweating pretty good by now and his hands continue to shake but not more so than before. I use the VNS again, hoping it will kick in. I listen for the vibration in his voice, to confirm the VNS has been activated. I hear nothing.

I pull the wheelchair up to the table and begin to brush his teeth. He’s getting restless now, and begins to cry out. This is not normal for Dear Son, he is normally happy to be sitting up. As I lather on the shaving cream and start to shave him, he begins to yell out more and seems in more distress. I soon realize that I have a full blown seizure on my hands. The seizure gets worse and time is getting limited. He can no longer sit upright and I can tell by the way the seizure is escalating that I won’t have time to get the hoyer lift over to him to remove him from the wheelchair. I’ll have to lift him out of there myself. He’s really yelling out now like he’s in severe pain and he’s shaking quite rapidly. I remove the footrests and tilt the chair forward. I am going to have to lay him on the carpet immediately or he’s going to fall out of the chair. I lift him onto the ground and then slowly let his head down so he doesn’t get hurt. I race to get the Diastat, a rectal valium of sorts, to stop the seizure. I am dripping in sweat now, worried it won’t be enough. I tear open the diaper, administering the Diastat as quickly as I can. Sweat pours out of my head so fast, I can hardly see.

With each passing seizure, I find the adrenalin seems to be pumping faster and faster, at least with the big ones. At some point, as Dear Son deteriorates, you know there will be an end and with each hospitalization and with each milestone loss, every event takes you a step closer to the final day. You begin to wonder as each one happens, if this is “the” one. Because of that, the adrenalin pumps faster and the sweat just pours out of my forehead, like a cartoon charactature drawing in the comics section of the newspaper.

The Diastat is also getting harder to administer. No longer am I giving it to a child, but a nearly full grown man. It’s hard to roll him over and just plain harder to administer. He yells out some more and I begin to wonder if it will be enough. Once it’s administered, it’s just a waiting game to see if it will work. I am sweating even more now, if that were an option. I look at my watch. This seizure has been going on for over twenty minutes now. I wonder if I am going to have to call 911. All I need is for the Diastat to kick in and the seizure should start to recede a bit. The problem is that it’s just not as fast as it used to be. In the beginning, when I started using it almost ten years ago, the Diastat would stop the seizures on a dime. Now, it stops them typically within ten minutes or so. I only administer it if I have a seizure that getting bigger or advancing, as I call it. Fifteen minutes later, the seizure begins to come down a bit and I know the 911 call will not have to be made. Dear Son has beat the seizure. He lies on the carpet, as I rub his back. His eyes are rolling back and his eye lids are having a hard time staying open. I talk softly to him as I rub his back, propping his head on a pillow. I know he will need to stay here until he comes out of this. It’s not long before he’s fast asleep. He’ll need to stay here for a while until he wakes up since it would be too hard to move him like this.

As time goes by, I find myself holding on tighter. The thought of Dear Son not being around is scary. I had a dream the other night that someone was trying to take Dear Son away. I went searching frantically for him and when I found the man, I told him he could take anything he wanted from me, but he could not take my son. I took Dear Son back from the man and woke up in a cold sweat. The clock read 3 a.m. I was so shaken by the dream that I couldn’t go back to bed right away. The next day I told Dear Son about my dream. We have a little catch phrase that I use with him. It is, “where you go, I go” meaning that whenever he has to go into the hospital or do anything, that I will always be there with him. I told him that after I told him about my dream and he smiled. He knows I love him and I love taking care of him. I tell him all the time that there is nothing I love more than taking care of him. He has become my purpose in life. While it’s true, you have to build a life for yourself, the reality is that when you care for a person with this many needs, you don’t have time to do that. They are your life.

This week, I received an e-mail and a letter regarding the cuts by the Department of Human Services in our state. They fund the respite program that we use, along with many other services for people with disabilities in our state. Without these funds, disabled people can not get the care that they need, whether it’s in a group type home or whether it’s receiving respite care in their own home. Our respite funding was cut by $200 which is 20 hours of respite care that we will not be able to use over the next year (typically I receive on average 10 hours of respite care a month, enough to run a few errands). I worried not for myself or for Dear Son, but for those children and adults in homes where the staff was already overburdened (you may recall an earlier post where one of the residential programs has one aide for every 7-10 pediatric fully disabled residents) and there would be additional staff cuts. I realized that in the end, that the only time you are guaranteed good care is when someone loves you. When someone loves you and is able to care for you, your needs will be met. I feel honored that I get to be that person for Dear Son. But I also know that some people don’t have anyone to care for them other than the state. And for those people, they need the funds to employ the people who will care for them. Caring for the disabled is not optional, it’s mandatory. It’s funny, we require driver’s in our state to carry auto insurance, in case they are in an accident but caring for the disabled people in our state is optional. There is a saying that goes like this, “how you spend your money, says a lot about you.” I wonder what these funding cuts say about us. But more importantly, I worry about developmentally disabled children and adults and if they will be hungry longer since there are fewer people to help feed them or get them their food on time, or their diaper changed quickly or that someone can attend to their seizure fast enough. Who is there to help them after the pink slips are administered? We need the Department of Human Services to restore those funding cuts.

Note: The Department of Human Services announced budget cuts last week that will have a substantial impact on services provided by many organizations that serve the developmentally disabled. Our state is retroactively reducing the amounts they will pay some programs by 2-12% Another agency in our area has funding cuts in excess of $500k this year alone. This will result in staff layoffs, reductions in wages and fewer patients being served.

Dream Kitchen-An Employee Lunchroom Redesigned

Kitchen "Before" Picture-Here is the "before" photo of the employee lunchroom. Notice the large black door and small refrigerator.



Here is the "After" photo.


Several months ago, I shared with you a home that I staged for a client. The post was called, "Designed to Sell." The home, after my staging, sold in only 28 days, compared to the ten month average for homes in the area.



Since that time, I wanted to share an exciting project that I recently completed. I was contacted to consult with a client on an employee lunchroom. At the present time, the space was used strictly for employees to eat their lunch. The client indicated that she would like to have a stove in there since they frequently have clients at the corporate offices and after a few days, ordering in sandwiches can get a little old. From there, our project began.




I started the project off with a tour of the facilities to see what finishes were currently used throughout the corporate offices as well as colors and current design. I wanted the lunchroom to be modern yet reflect the traditional style used elsewhere in the company. I spent three hours on the consultation, finding out who uses the lunchroom currently, how many clients they will be cooking for, how many people will use the lunchroom during the peak summer times when the interns are there as well as how people actually use it-where do they sit, how are the tables grouped, etc. For me good design begins with a kitchen that functions well; once that is achieved, then I plan out the design aspect. The client also specified that we needed to keep the existing flooring and wallpaper.
For this kitchen, I made the space planning, organization and design decisions. I selected the kitchen cabinets, added an island to serve as a buffet for serving food to the clients, added overhead lighting on the island and under cabinet lighting for cooking. I selected a cherry cabinet to match the cabinetry used elsewhere in the corporate offices. My design scheme was brown (as in the cabinets and furniture), gold (countertops, tablecloths and lettering), orange as the accent color and brushed aluminum for all of the finishes. I worked with the client on the finishing touches and selected three rug options and gave her my first preference as the ones that are shown. I selected the picture frames to pull the design over to the lunchroom side and the flowers/vases for the center island. While fresh flowers are always preferred, fresh flowers for the lunchroom on a weekly basis were cost prohibitive so we went with silk to give it some punch. I guided the client’s design choices for the chairs. She wanted to add the chairs and I suggested a modern, graphic, circular design with the colors of the kitchen. She then sent me pictures of the chairs prior to ordering and I gave her the thumbs up. We also had to deal with the door in the center of the kitchen. I suggested painting it the same color as the wallpaper so it would blend and visually disapper. Instead, the client was able to have a piece of steel cut and placed over the door. I think that was the right decision.

One of the keys to this design for me, was customizing the lunchroom for this company. I did this by:

• Adding a monogram to the kitchen island; this is the first initial of the company name. I felt leaving the kitchen island bare was a mistake. I thought about using the company logo, but that would have been too impersonal. This also keeps this kitchen from looking like every other kitchen. Instead, I suggested adding the letter “E” in gold to the island. I looked through the fonts on-line and decided on this Edwardian font.

• Using the company slogan on the wall. I asked the client if they had a slogan that was used in their corporate materials or in their handouts. I suggested adding this to the wall. This kept the lunchroom feeling “corporate” as opposed to a restaurant area. She ordered and installed the slogan on the wall. This was no easy task and I think she did a beautiful job. (We are still waiting for the period to arrive to complete the sentence.)

• The fruit bowls on the table. This company supplies fruit for their employees. We added new fruit bowls at every table to personalize the area.


• Glass tops and tablecloths for the tables. The client wanted glass tops made for easy clean up. She wanted tablecloths that were washable but it was cost prohibitive to have them made. I suggested she use pinking shears and cut them to size, which she did.

Functional choices included:

• Under cabinet lighting is not only beautiful but allows the employees to read the directions for cooking.


• The towel bar was installed on the kitchen island as a place for them to dry after the kitchen has been cleaned up, let’s say after food has been cooked.
  
  
  

• On the right side of the kitchen, near the refrigerator, is the coffee pot. Coffee accessories are located in the drawers below and paper plates and silverware are located there as well, so employees will have easy access to them when using the microwave.
  
  

• Recycle bins located in the center island for easy clean up. The center island also houses pots and pans for use on the stove across from it.
  

• 
  Under cabinet lighting is not only beautiful but allows the employees to read the directions for cooking.
  
• On the sink, there is a hot water dispenser on the left and a built in soap dispenser on the right side, to minimize countertop clutter.
  
  
  

This kitchen could not be done alone. By working together with the client, we were able to achieve a great kitchen. Some things were changed along with way. Initially, we didn’t think there would be enough room in the budget for the stainless steel appliances and thought we’d have to choose white. At that time, we had white subway tile for a backsplash. The client however was able to negotiate some great deals, and got all of the appliances for only $3,300. The client acted as the general contractor on this project, working with the cabinet maker, having the stainless steel backsplashes cut to size, installing the lettering on the walls and shopping on-line for the fruit bowls and chairs (Overstock.com) for the lunchroom. She also found the table and mirrors that were used with the upholstered chairs and swapped out the existing hardware for that to match the cabinets. She worked tirelessly on various aspects. The sink was donated from their manufacturer however the hot water dispenser had issues and it took several installs to get it right. The ice maker leaked and required service calls to fix that. The backsplash was installed and then re-installed when an additional outlet was required.

There were also some glitches along the way, the biggest one being the cabinets. I selected 42 inch cabinets for the kitchen and that’s what the client ordered. 36” cabinets were delivered however. Since they were custom cabinets, a decision was made to work with the 36” inch ones, and add crown molding to the top and over cabinet lighting on top. This solved the problem and it still looked great.

All in all, a great project. This is a $60k kitchen that was done for $22k excluding labor. Most of the discounts were on the cabinets, since the company manufactures them along with the sink. The steel that was used to make the sinks, was cut for the backsplashes and for the door. But the project is only a success if people use it. I suggested that they have a kick off party and cook for the employees using the new stove. Interestingly enough, the employees started using their laptops in there, are having meetings in there as well as eating in there. Most interesting, was the item that employees used the most, the ice maker. We did not identify this as a need so it was interesting to note how many employees use this feature. And a kitchen that is used, is the best kitchen of all.

Medical Update III- Home

Dear Son was released from Big Academic Medical Center yesterday. The EEG was much better, as expected, so he could go home. While it still had some abnormalities, it was much improved. I can now breathe a sigh of relief, even if it's only a temporary improvement. Ped Neuro Doc suspects the antibiotics are the reason for the improvement. Regardless, it is still good news.

Dear Son is resting well. We are glad to be home. It is a good feeling that he should be able to start school on Thursday, provided he continues to improve. Ped Neuro Doc did a really nice job overseeing Dear Son's care. Despite the fact that they were low on techs, he managed to get the EEG completed so we would not have to make a return trip later this week.

I am happy that we have a lot of good news to celebrate. Thank you for all of your prayers and concern for Dear Son.

Medical Update II

On Wednesday, Big Academic Medical Center started Dear Son on Zosyn and Vancomycin via the IV. On Thursday morning, I noticed that Dear Son was bright red and had Red Man Syndrome, a common adverse reaction to Vancomycin. He has had this before and I remembered it once I saw it. They started him on Benadryl to counteract that and things began to improve. Last night they were able to wean him off of all oxygen and he is breathing on his own. Today, they stated that they will switch him to oral antibiotics and see if he tolerates it. He will continue this for 12-14 days. They stated that the pneumonia is most likely an aspiration pneumonia or a non-MRSA pneumonia. He opened his eyes today for the first time since he was admitted although he is still sleeping the entire day. The good news is that they expect that we are probably out of the woods regarding the pneumonia; his fever is gone and the antibiotics appear to be working. He still has a pretty good pnemonia, so it will take time to get rid of it totally.

Today they will begin the extended EEG monitoring. Typically, when Dear Son has an infection, it will lower the seizure threshold so more seizures will present. In Dear Son's case, he was having seizures prior to the pneumonia so I can not say that I noticed more due to the pneumonia. Conversely, once an antibiotic is started, it can have the opposite effect by decreasing seizures since the antibiotic will raise the free portions of the seizure meds thus increasing the medicine levels which can make them more effective thus reducing the seizures. The problem arises when the antibitotic is finished, seizures will go back to their previous levels.
So essentially, we expect that the EEG may be better, although the effect may only be temporary.

They expect that he will remain in the hospital until we get the EEG issues resolved. He'll be monitored through Monday and then once the EEG is read, we'll take it from there and can possibly get released.

Thank you for your concern and I'll keep you posted the best I can.

Dear Son Medical Update

Since my last post, Dear Son continued to have seizure issues. It was difficult to determine whether or not the Felbatol was actually working and during his seizures, he began yelling, getting very hot and turning red, almost as if he were going to explode. A decision was made to cut the Scopolamine patch in half last week. Since that time, he strugged with his secretions and choked quite a bit. In addition, we attempted to increase the Felbatol to see if it might result in an improvement of the seizures. It seemed initally as if it might be helping however I could never be confident in my decision as to whether or not it was really effective.

In the interim, we were waiting for a hospital admission to do another EEG. Big Academic Medical Center is down to two techs right now so an admission was not in the cards until next week. In the meantime, Dear Son continued to choke and began running a fever today. I contacted Ped Neuro Doc and he suggested I take him to the ER for a chest x-ray and labs. I did that and they confirmed that Dear Son has aspiration pneumonia in his right lung (lower lobe and up into the middle). They started him on Zosyn and Vancomycin via the IV along with some chest PT. We will most likely be there a week or so until the antibiotics run their course. We still need to address the seizure issue so I really can't be sure.

I'll update when I can. In the meantime, I need to get back to the hospital.

What Happened to the Easy Days of Summer?

It has been a long and stressful summer. It was good to take a break from blogging and I am happy to return. What I thought might be an enjoyable summer, proved to be pretty challenging to say the least. Dear Son had taken a turn for the worst.

Since June, Dear Son continued to have significant medical issues. Perhaps one of the first issues is that of the Scopolamine patch. As you may recall, the Scopolamine patch was prescribed in April to assist Dear Son with his nighttime choking. The Scopolamine patch has worked wonders and virtually eliminated all nighttime choking episodes. Some of the side effects of the patch, have to do with delayed emptying of the stomach and delayed motility. The reduced urination and bowel movements continued to be a concern much of the time. We were aware of these effects and continued to monitor them.

As summer progressed, Dear Son's seizures began to increase in frequency and intensity in July. In addition to the increased seizures, he began to get very hot, his face turning red and yelling out or screaming with his seizures. In addition, he began to have seizures at school. While the patch was extremely effective at controlling his nighttime choking, it did not allow him to sweat. The heat and high humidity this summer put Dear Son at risk for heatstroke before we figured out what was occurring. With the patch, he was not able to sweat therefore unable to cool himself down. As he began to overheat, his face turned red and he began to yell out from the pain. After some conversations with his pediatric neurologist, he realized what was occurring and from that point forward, I needed to keep him out of the sun and more importantly the heat.

This proved to be a fairly tall order. Since he could no longer be outside on very hot days, he was unable to attend summer school for many of the extracurricular functions. This was the first year that they had an afternoon program full of fun activities for the kids to do after their half day at summer school. This program was only on Tuedays and Thursday and would allow me to work on those days. We had paid in advance for these program, $30 to $40 per day and had to cancel most of them due to the high heat or his inability to tolerate the heat or humidity on those days; all nonrefundable. It was more important to be safe. The down side was that it made for long days and not as much fun. They had a full staff to assist these kids and they were able to take them places that I could not manage on my own. Since he was not able to attend these functions, I had to cancel work on these days.

On the days he was home, I tried to take him for walks. June was the first month I could really begin to exercise again after my back surgery so I was anxious to continue walking. Trying to keep Dear Son out of the sun in July, the hottest month of the summer, so he didn't sweat, proved to be a nearly impossible task. Since his morning feeding (via the g tube) takes nearly three hours, I had to get up pretty early so it would be finished so we could walk before the high heat and humidity set in. I worried constantly about the heat and his inability to sweat. I took extra water, cooling packs and a wet washcloth to cool him down. But his issues would not end there.

Summer school ended towards the end of July. Dear Son's seizures continued to get worse. Not only was he having some pretty significant seizures but he was also having many smaller seizures throughout the day. I was worried he might be seizing all day but I wasn't sure. They were small with his hands shaking at times however they were occurring so often throughout the day that I could no longer keep track. He also began having some larger seizures that had me concerned. The scopolamine patch made managing them more challenging as well. Due to the delayed emptying of the stomach, his seizure meds would remain in his stomach longer and take longer to be processed. This was not helpful when he was having some major seizure issues. His pediatric neurologist was on vacation most of July and that only added to the mix. Once he returned from vacation, Dear Son was admitted to Big Academic Medical Center and hooked up to an EEG.

After twenty four hours, we had an answer. Dear Son was seizing twenty four hours a day. The problem with that was that our options were fairly limited. Dear Son has intractable seizures and is already on fairly heavy doses of nearly every seizure medicine. He also has a Vagus Nerve Stimulator implanted. He remains somewhat unusual in that while other children's seizures might be controlled with a VNS or one or two seizure medications, he needs them all. (We have tried repeatedly and unsuccessfully over the past few years to take him off of some of them and his seizures increase as soon as we attempt to decrease them.)

It was determined that we had two options: 1) to give him Ativan via the IV to stop them or 2) to start him on Felbatol. The problem with the first option was that it was short term. While they may be able to stop them with the Ativan, I wouldn't be able to continue that at home, therefore, it was strictly a short term solution. It was then decided that a trial of Felatol would be in order.

Felbatol, is a third line medication that has serious side effects, namely aplastic anemia and liver failure, both of which can be fatal. Felbatol is only used when other medications have failed and when the risk of the seizures outweighs the serious side effects. It can also increase levels of some of the other medications, making it problematic. On the plus side, it can sometimes work fairly well. With virtually no other options, a trial of Felbatol was started. I googled Felbatol looking for any horror stories and found none. I did find a helpful review on Epilepsy.com however and that made me feel somewhat better. I also found a few reviews in which patients stated it was the best seizure medication they ever tried in terms of seizure control.

After the first day or so on the Felbatol, his seizures seemed to decrease a bit however that was short lived. The seizures returned with a venegance and Dear Son had some of the most intense seizures I had ever experienced. Adding to the seizures, he was getting very hot, and at times it looked like he might explode. That's the only way I could describe it. I was certainly rattled by these and it was challenging to manage this. If I was slightly late with his meds, he'd have a big seizure. The problem was, they were so unpredictable. I was also very tired, managing these throughout the day and at night. I also had to be careful that I was allowing enough time between feedings with the delayed stomach emptying and then when he'd have these seizures, I was worried the meds wouldn't be processed fast enough to help him. To top it off, I hadn't had a weekend off in over a month and I was exhausted. Dear Son's Dad had been working a lot and I hadn't had a break. Finally, I called his Dad and asked him to take him for a few days so I could relax and get some much needed rest.

It has been a little over two weeks since he's been on the Felbatol. For the first week and a half, I can't say I saw many changes or improvement in his seizures so I was not convinced it's working. I met with the pediatric neurologist yesterday and discussed our remaining options. At this point, he can admit him and give him a bolus of steroids via the IV to try to get control of them. The other option is to do a drug induced coma where he would be intubated and deeply sedated in hopes that they could get the seizures stopped.

All in all, some tough choices. On a brighter note, he seemed to do much better today. What happened to the easy days of summer?

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

Summer Break-No Posts Until August 15th

After blogging since February of 2006, I am going to take the summer off and will return to blogging on or about the middle of August.

I apologize for not posting sooner however I had hoped I could write a bit more before now. Dear Son has been out of school for a few weeks which makes it very challenging since I provide total care for Dear Son, work two days a week and don't have any nursing care. Dear Son has also been having more seizures for the month of June so that is adding to the mix. He started summer school last week for a few hours in the morning and that will continue for a few more weeks. Overall, he is enjoying himself in summer school and loves swimming the deep water. We are fortunate to have a nice summer school program that is adminstered by the special needs park district and they have a lot of fun activities scheduled for him in addition to swimming two days a week. He has three adult males that are able to help him enjoy the swimming pool so he is having a lot of fun.

We have also enjoyed walking again this summer. This was the first month since my back surgery last year that I am able to walk or do any type of exercise and we are fortunate to have a nice walking trail around the golf course and nature trail to enjoy. We are walking around an hour a day most days of the week.

Thank you for your interest in Dear Son. We hope you enjoy the summer.

For Better or for Worse, For Richer or for Poorer…A Father’s Day Tribute to Dear Son’s Dad

I vividly remember visiting the residential/day program for Dear Son just a few weeks back. As you may recall, this was my first visit to a residential center of any kind as I searched for an appropriate day program for Dear Son. When I was there, I couldn’t quite shake the images of the children living there or wonder just what it would be like, through a child’s eyes, to live there. Many of those children were placed there by their families and it was hard to imagine, what it must have been like to make the decision to place their child there. I know first hand how difficult it is to work full time when you have a special needs child, since daycare for them is virtually non-existant. On the other hand, the idea of placing “my” Dear Son or any of my children in a facility, would be too much for me to bear. I can’t imagine what that day would be like, when you look that child in the eye, and leave them there. The fact is that while many places are underfunded and try to do a good job, I don’t think that many would do as good of a job as a loving parent would at home.

As I walked through the facility, I was bothered by the lack of sheets on the beds and the lack of personal effects on the children’s dresser. I wondered if anyone came to visit them since I hardly saw anything personal in any of the rooms. Even if you didn’t want to leave things that were valuable there, you’d think there might be some family photos or some indication that people or families had been there to visit these kids. But I couldn’t find much.

As I checked the sign-in sheet, I noticed there were only a handful of visitors the month I was there and for all of the last six months. But the most striking thing from my visit, was an article in the promotional brochure.

The brochure was at the entrance to the facility. In there, it detailed one particular resident and his family’s decision to place him there, twenty years ago. The child, now 23, had been there over twenty years. While the child had spent many years there, the parents were active with the facility and with their son. What struck me about the article, was that the father was a former Big City NFL football player. Not only that, but he had his own business, that had grown to over 200 plus employees. This father, in the peak of his professional career, had made the decision to place his child there. I couldn’t help but wonder why anyone with good financial means would chose a facility for their son, when the financial resources available at this facility would not allow the child to be cared for, in the best manner. I mean, let’s face it, with one aide to seven severely disabled children, what kind of care will the child get? What I couldn’t get out of my mind, was wondering, if that same father had a normal son, if he would chose to place him somewhere, where the care would be less than what the son could have received at home?

I imagine that as a pro football player, there was a time in that man’s life where he wanted more. Wanting more and being a professional football player would be a big dream for a lot of men. Achieving that goal would be huge then and even now. More than that, I would imagine a father who loves sports would love a son who is active and one that could play sports and do those kinds of things that the father loves to do.

But I just wonder, would that former pro football player, have placed a normal son in another home? Or would he be have bonded more with him, teaching him to play “the game” of football and possibly coaching his team. I mean, how does a person come to the decision to place their child in a residential facility, when you have the means to take care of them at home? How? How do you sleep at night and enjoy your life when you don’t know if your son is getting fed, getting their diaper changed or enjoying life?

And that’s where the difference comes in. Father’s Day is Sunday and I can’t help but think about Dear Son and his father. What would Dear Son’s life be like if we had chosen to place him in a facility? Dear Son’s Dad was quite athletic as well. He was an all star football player, a wrestler, a weight lifter and a body builder. I imagine that his father dreamed many times of having a son to play sports with; I don’t imagine he ever dreamed of changing his son’s diapers at sixteen or lifting him out of a car and into a wheelchair. I don’t think he imagined giving his son a dozen meds several times a day or feeding him via a g-tube. But his father is different.

He takes good care of Dear Son, even though we are divorced. He respects me and helps me whenever I ask. I remember one time, several years back, where Dear Son had an “accident” and had a bowel movement that leaked out of his diaper and when he walked across the living room, left a trail of stool, some twenty feet long. I was in the washroom less than two minutes when this occured. When I called him to ask for help and support, he drove 100 miles round trip to help me with Dear Son-to clean up the carpets and to give him a bath. Not many men would do that.

He makes sure that when he takes Dear Son for the weekend, that he’s clean, he’s fed and his diapers are changed. He takes him out for walks and tries to have fun with him. When Dear Son’s getting his lunch via the g-tube, he sits next to him on the couch, with his arm around him, and watches man shows, as his Dad calls them-things like auto racing and other manly sports, so they can bond together. The feeding takes three hours. I doubt someone does that at the residential facility. I bet those children would love it.

When he gives him a bath, he makes sure the water temperature is just right, so Dear Son doesn’t get cold. A hired caregiver might not care if that happens.

He jokes around with him and tries to make him laugh. Overall, he tries to make his life better. I think sometimes, that the commitment to a disabled child is often more like wedding vows. You have to take care of them for richer or for poorer, in sickness and in health, for better or for worse…and that he has done. Mother Theresa once said, “It’s not the how much we give, but how much love we put into giving.” And no one has done that better than his Dad. Happy Father’s Day, Dad. And thanks for stepping up to the plate.

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

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.