Sunday, July 30, 2006

Back to Blogging


After a much needed break, I am happy to come back to blogging. I'll have a new post on Wednesday.

Things hit a crisis earlier this month when Dear Son's claims began coming in fast and furious after his May and June hospitalizations. I had over 100 claims to process not to mention the fact that my file cabinet was overflowing and needed to be sorted out. Cases and cases of Dear Son's formula and other supplies began to fill up my foyer and suddenly things were overwhelming. It look more like a hospital supply room and less like a home which is not good. Dear Son's Dad put some shelves in the hall closet for me and I was able to move all of the feeding supplies to the new shelving. I was able to get through all of the claims with the majority of the claims processed with the exception of a few that will require some follow up calls. In my procrastination over cleaning out the file cabinet, I took on some other tasks and re-organized the garage, detailed my car, shined up the kitchen cabinets and countertops along with doing a few projects in there. I read a few organizing books while I was doing my projects so that helped inspire me. It doesn't seem to matter how much I do there is always something I could be doing. I am not very good at sitting still. I am happy that our house looks like a home again and I have a clean desk without any paperwork!

I also had to hire (and later fire) a Respite worker. I'll probably write a blog about that but I nearly had a heart attack over that one.

Dear Son seems to have stabalized (fingers crossed) and is doing much better than he had been earlier this month. It seemed to be touch and go for a while. It has been quite an adjustment for me not having to cook for him anymore since he has switched to g tube feeding.

It has been ungodly hot here this month. I'll be glad when the weather finally cools off and fall arrives.

Thanks for hanging in there and keeping me in your thoughts these last few weeks. I was amazed at how many people checked in every day. That was nice. I am so excited to be back and can't wait to start catching up on your blogs again!

Tuesday, July 25, 2006

Celebration!

Dear Son and I are celebrating today. We have gone thirty days, count 'em, thirty days with no hospitalizations. This is the first time since his MRSA pneumonia in May (and suspected MRSA pneumonia in June). Woo hoo! Of course, we are going to the Big Academic Medical Center for some lab work today but we are not staying!

I am getting things done and should be able to return to blogging some time next week. Thanks for checking in so often.

Tuesday, July 18, 2006

Jack in the Box



This is a picture of Dear Son as a Jack in the Box. At this point, I started using the wheelchair as part of the costume. This opened a world of possibilites however it was the last Halloween costume I made since Dear Son was in the hospital after that and then he got too old. One of the last costumes I wanted to do was to have him as an army guy in a Hummer and to build the Hummer over the wheelchair.

I would love to make costumes for kids in the hospital. Some of the costumes I'd like to make are a fireman in a fire truck (complete with a wooden ladder, bell and dalmation) with the fire truck fitting over the wheelchair, an astronaunt in a rocket and for a girl, a princess in a castle where the castle would fit over the wheelchair. I'd love to make these costumes for the kids and then if they are in the hospital on Halloween, the Child Life department could allow the kids to select the costumes and then take a picture of the child for Halloween in the costume of their choice. I am not a real crafty person but I'd like to think I have an awful lots of costumes that I could create.

It is more difficult when you child is disabled and in a wheelchair at Halloween because you can't go trick or treating in the traditional way. When the child doesn't speak, you can't have them say "Trick or Treat" and they often can't hold the bucket nor can they even eat the candy, assuming of course, you would let your child eat it to begin with. I took him a few times to show off his costumes, which is really what it's all about and hooked up his communication device to the foot of his wheelchair. He could then take his foot and hit the communication device to say, "Trick or Treat". It's never really about the act of trick or treating but about having experiences as a parent or a mother that is normal and typical. There are so many times when you'd just like to be normal and do things like other mothers or have your children do things like the other kids. As the mother of a special needs child, everything is always a lot more difficult.

I had so much fun creating all of these costumes. The inspiration was my best friend in grade school. At that time, we would go home for lunch and come back in our Halloween costumes. Her mother always made exceptional costumes for her and sometimes, they were so good she was totally unrecognizable when she returned. I decided I wanted to be the mother who made the cool costumes. It turned out, it was a fun way to celebrate Dear Son.

Now that he's too old.....I've been thinking about the cat. The cat's only five years old. I made two costumes over the years, the Cat in the Hat (with the cat sitting in the hat) and made a Batman costume due to the cat's coloring. He didn't like the second one. But I could also do, "Cat's in the Cradle" or "Catsup and Mustard" with the cat sitting in half of a catsup bottle (I would make the catsup and mustard bottles plus I have a Munchkin cat that's only seven pounds so he'd look cute) and have the catsup and mustard bottle on a red gingham tablecloth. Hmmm,.....I could take these pictures and make them into Halloween postcards......

Monday, July 17, 2006

The Tin Man




This is a Halloween picture of Dear Son as the Tin Man, pictured here with his Munchkin kitty. Dear Son is 9.5 years old in this picture. This is by far the most labor intensive costume that I made for Dear Son. For the costume, I took poster board and measured each body part and cut and velcroed the poster board in place. Once it was the right size, I covered the poster board in foil. I used silver face make up and covered a funnel for the hat. This is my favorite costume that I made for Dear Son.

*Note: I need to take the next two weeks or so to attend to some things that will require my full attention. As a result, I will not be posting until the end of the month. Until then, I will be posting some photos of Dear Son. I look forward to resuming my posts on a regular basis at that time.

Sunday, July 16, 2006

The Next Food Network Chef?




This is my favorite chef....perhaps he could be the next Food Network Star? Photo is of Dear Son, age 6.5 years old. This is the only Halloween costume I didn't make.

*Note: I need to take the next two weeks or so to attend to some things that will require my full attention. As a result, I will not be posting until the end of the month. Until then, I have posted some photos of Dear Son. I look forward to resuming my posts on a regular basis at that time.

Friday, July 14, 2006

The Cat in the Hat




I thought I'd share some photos of Dear Son until I can get back to blogging at the end of the month. This is a photo of Dear Son as the Cat in the Hat, age 5.5 years old.

The Scarecrow




I thought I would share some photos of Dear Son until I get back*. I'll start with some Halloween photos.

This is a picture of Dear Son, age 4.5, as a scarecrow, in front of our house.

*Note: I need to take the next two weeks or so to attend to some things that will require my full attention. As a result, I will not be posting until the end of the month. I look forward to resuming my posts on a regular basis at that time.

Tuesday, July 11, 2006

Break

I need to take the next two weeks or so to attend to some things that will require my full attention. As a result, I will not be posting until the end of the month. I look forward to resuming my posts on a regular basis at that time.

Thank you for understanding.

Saturday, July 08, 2006

Happy Birthday To Me!

Cathy over at Cathy’s Rants and Ramblin’s recently had a birthday and listed, “54 Things You Never Wanted To Know About Me”. We had quite a party so I decided to continue the tradition. Today is my birthday, so I decided to create my own list. I have also brought plenty of Diet Coke for all of you Diet Coke fans and plenty of Diet Pepsi. As for me, I am neither, I don’t like pop or any carbonated beverages. I did however make a little treat for today. It’s called, “Not Yo’ Mamma’s Banana Pudding”. It’s a pretty good recipe made by my favorite chef, Paula Deen. According to Paula, it got it’s name because one of her friends told her to try the recipe and it was called, “Mamma’s Banana Pudding”. When Paula tried it, she thought it was so good, she said that it certainly wasn’t “her” Mamma’s Banana Pudding because it was so delicious so she renamed it, “Not Yo’ Mamma’s Banana Pudding”. I love that story.

O.K. I was born at 9:21 p.m. on July 8th, 1958 making me 48 today and probably explains why I am a night person.

Here’s my list of 48 Things You Never Wanted To Know About Me:

1. I am terrible at being on time. I hate that about myself.
2. My two favorite things are flowers and children.
3. I am very romantic.
4. I usually need more sleep. I consider sleep a luxury.
5. I am very organized. Clutter gives me a headache. I am always looking for ways to be more organized.
6. I think smart men are really, really cool. And fascinating. And the best part, is that when they get really old, they are still really smart.
7. I like numbers and am very analytical.
8. I keep a perfect yard. I am the person who has beautiful flowers and never has a weed in her yard; I am the one who all the neighbors ask for lawn advice. Spending time gardening is my favorite hobby.
9. I enjoy being married.
10. I am terrible at fixing things. I like people who can.
11. I love fast cars. Like, really, really fast cars.
12. I am a fierce competitor.
13. I have no patience and can’t stand waiting for anything.
14. I admire people who stand by their values and their principles.
15. I can’t swim.
16. I am a great salesperson. I can sell anyone almost anything. I never lie when I sell though; I don’t believe in that.
17. I hate people who always talk about themselves.
18. I love hearing about how people got started in their business and business stories in general. I also love business shows like-Restaurant Makeover or Recipe for Success on the Food Network.
19. My favorite car that I have ever owned was an Infiniti I30. It was fast and luxurious; I used to say it was like when class and elegance meet technology.
20. Seeing Dear Son smile is the best part of my world.
21. I hate getting my oil changed (see #13 where I can’t stand waiting for something).
22. I like men with lots of hair on their chests. A lot. A really, really lot. And I love it when they wear their shirts unbuttoned so I can see it. (Wiping drool off now.)
23. I am very sensual.
24. My dream vacation would be to Bora Bora. Going to the Super Bowl would be close second. With the Green Bay Packers and Chicago Bears of course.
25. I love flying. Actually, I love the take off, especially if it’s a really fast jet. See number 11. I hate flying over water. I’ll do it but I really don’t like it. Ditto for driving over bridges.
26. I have always had really nice long nails.
27. I love the Tiffany window (display)in Boston. It’s my favorite window.
28. I would love to tour all the great flower and great water gardens of the world. 29. I also love historic homes and great architecture.
30. I would love to have a secret weekend place just for “you know what”. It would be a large studio with a huge bed overlooking a fantastic view, probably the ocean.
31. I wish these people were my inner circle: Martin Luther King Jr., Bill Gates, Paula Deen, Oprah Winfrey, Martha Stewart, Gary Comer, Eunice Shriver and Elvis Presley.
32. I like really fine china. For everyday use.
33. I am fascinated by houses-old house with beautiful woodwork and craftsmanship and new homes with beautiful lines and lots of windows.
34. I never forget when someone is really kind to me, especially when I need it.
35. I hate people who sell out.
36. When getting a gift, I always prefer a gift that someone made with their hands than one they purchased with their wallet.
37. I love technology. I just wish it came easier to me.
38. I like people who keep really clean cars.
39. I am not a morning person and don’t like people who are, but only when I get up.
40. I can’t parallel park.
41. I have a great choir voice. I love to sing in my car.
42. I love massages. When I go on vacation, I like to get one everyday.
43. I put all my laundry in color coded laundry baskets-white, dark and lights and then have two more, one for white towels and one for special wash.
44. I only use white towels. I also love white woodwork and lots of use lots of white in my interiors. I find white walls extremely boring though and institutional.
45. I love living near water.
46. I love a fireplace. I tend to use it almost eighteen hours a day in the winter. I don’t have one now though, and really miss it.
47. I keep a dream house notebook filled with all of the things I want in my next house. Did I tell you I was crazy about houses?
48. How you treat your children is more important than how you treat everyone else. How you treat the disabled or those less fortunate, comes a close second.

Friday, July 07, 2006

Retard

I received an e-mail from a friend of mine tonight. She has three children, one of which is special needs. Her daughter is severely retarded, along with a host of other issues. We e-mail regularly, mostly about what’s going on with our lives, but occasionally, we bounce medical issues or ethical issues off each other, since we both live the life as mothers of children with special needs. It is great because we can talk openly and freely about things with our children, that most people have never experienced or would never understand.

As mothers of children with special needs, we share a common bond. We are both good mothers and love our children deeply. We take good care of our children and are fine with their abilities and disabilities. While we certainly wish things were different, I doubt that either one of us could really imagine our special needs children as normal. If they were, it wouldn’t change anything about how we feel about them; we love them deeply and that’s that.

Several times in the past year, we have both had incidents were people have made derogatory statements about children/people with mental retardation. When these incidents have occurred, we usually will send an e-mail to each other discussing the incident. It is amazing to me, at which the frequency of these incidents is occurring. It is also hard to believe, that people in 2006, still think it’s “o.k.” to say these things.

Here’s the incident:

My friend went into a guitar place to speak with her son’s teacher after his bass lesson and walked past the front desk. It is a store where they sell guitars and stuff, and lessons are given upstairs. As she was walking by, she overheard a female customer saying, "I swear he looked like SUCH a retard playing that thing! I mean really, I told him, "Ferchrissakes, you look like a MONGOLOID!!!!" She was laughing her ass off. My friend said she wasn’t sure, but she thought she was talking about her poor son. The store owner just kind of mumbled – she really seems like such a nice person. She said she felt like the store owner didn’t know what to say or do. She said she didn’t say anything. And she didn't do anything, but she felt that she should have. Then again, she asked herself, "Why? What would I have accomplished?" Then she asks me, “What would you have done?”

I replied to her that I wasn’t sure what I would have done, mainly because when these things happen, I am so shocked at their insensitivity, that it leaves me speechless. I also responded to her and said that if you substituted the word “gay” and “fag” in the above incident for the words “retard” and “mongoloid” that the entire store would have been appalled at the conversation. People would have been appalled when reading the incident. The story might have been reported, harassment charges might have been filed, the story might have made the news in some areas. If you were to substitute the words, “black” in the above incident, people would have been appalled as well. But because it was the words, “retard” or “mongoloid”, it was somehow, okay.

I am amazed that some people still think it’s o.k. to make derogatory statements about people with mental and physical disabilities. I am amazed that people make statements about people who can’t defend themselves. I am amazed that people don’t understand how easily it can be for anyone to become disabled. I mean, you can get hit by a car and be severely disabled mentally and physically for the rest of your life.

Several months ago, I experienced an incident in the blogging world that had me very incensed. A fellow blogger, who is also a pediatrician, made a derogatory comment about “riding the short bus”. He didn’t seem to think there was any real problem with making such a derogatory statement like this. I was appalled that a pediatrician today could make such a statement and not see anything wrong with it. When I called him on it, he told me to stop reading his blog,that he could write whatever he wanted. Nice. The point isn’t that you can call people whatever you want because you have a blog, the point is that as a pediatrician, a professional, a human being and a father, you would think that someone who have more compassion than referring to those with mental disabilities in a derogatory manner. Aside from compassion, it’s just plain wrong. And then to accept money from these parents for your “professional” services, seems appalling. Can you really expect your mentally disabled child to be treated respectfully and with dignity by their pediatrician if they don’t see any problem with making derogatory statements like that in public no less?

In the end, I told my friend, that we need to come up with a response for people. When you are fortunate enough to have a child born normal, I suspect you don’t imagine what it might be like to have a child who is retarded. But ignorance is not acceptable anymore. It’s also not fair to Dear Son and children like him. He is not any less of a person because of disabilities. And to be referred to as the butt of anyone’s joke is totally unacceptable today.

Tuesday, July 04, 2006

Independence Day

We were all ready and excited to go to the balloon launch. Every year, Serena’s Song, the first wheelchair accessible hot air balloon, comes to our town, for an “Eyes To The Sky Festival” where several hot air balloons light up the sky at night. It’s a big festival that’s held fourth of July weekend. We get an invitation through the Special Education Co-op at Dear Son’s school. The invitation allows Dear Son a “tethered” ride in a hot air balloon. This means that it goes a few stories up in the air but is still attached to the ground. The balloon goes up at 6 a.m. or 6 p.m. Normally, we choose 6 a.m. since the odds of going up are usually better. The weather has to be perfect for a launch-it can’t be windy, rainy or too hot, otherwise the launch is scrubbed.

We drove to the festival. I selected a 6 p.m. launch which was unusual for us. I dressed Dear Son in a fourth of July red t-shirt and some shorts. Parking is difficult. Typically, they close off all of the main streets and many side streets for the four day festival. The Special Education Co-op sends us a special parking pass, that allows us to park in the handicapped lot, that is located close to the festivities. Without a pass, you can’t even access the street, even if you have handicapped plates, which I do. We showed our pass and got right in. It was still a distance away but closer than the regular parking. There were policemen directing traffic so all of the handicapped parkers were in a line waiting to get in. I drove in my spot and a few seconds later a beautiful new yellow Hummer pulled in beside me. It was bright, shiny and new. I salivated at the thought of having a nice big vehicle like that for Dear Son’s wheelchair. I could imagine how easy it would be to get the chair in and out of the back especially since it was very boxy, just perfect for the wheelchair. The boxier the SUV’s, the better they are for the wheelchair since you need the top of the wheelchair to clear the ceiling. Due to the width of the Hummer, I could still get a lot of stuff in the back. Normally, with my car, I can only fit the wheelchair in the trunk and nothing else. I couldn’t wait to talk to the owner and whoever was in the wheelchair and complement them on their beautiful vehicle. In the meantime, I was just excited to see it up close. I love cars and used to drive a luxury SUV many years ago, when I worked full time and had daycare for Dear Son. Now that I really need a bigger car, I can’t afford because there isn’t any daycare for the disabled and I stay home to care for him and work 10-12 hours a week.

I opened Dear Son’s rear door to let the air in while I got his wheelchair out of the trunk. If I don’t open the door, it might get too hot for him while I get his wheelchair out of the trunk. I waited while peeking out of the corner of my eye at the beautiful Hummer. Finally the first door opened. First, the father got out and then the mother. The back doors flew open and sounds of laughter exploded from the vehicle. They were sure having a good time. Then I waited until, not one, not two but three eighteen to twenty year old boys got out of the car. All were young, tan and gorgeous. Big muscles and athletic too. Except, no one had a wheelchair. Or a cane. Or a disability. As far as I could see. Nope. Not a single one. Now, yes, it’s entirely possible someone could have a disability that I couldn’t see, but overall, they all looked pretty healthy and there wasn’t a disabled body in the bunch.

My heart sank and I put my head down in disbelief. I didn’t say a word. They all walked to the festival and continued having a good time. Probably pretty excited that they used someone’s handicapped pass to put up in the window so they could secure a fantastic spot and wouldn’t have to walk far. Ten minutes later, I finally had Dear Son’s wheelchair out of the car, Dear Son strapped in securely, his diapers and supplies loaded onto the wheelchair, his feet strapped in and locked up the car. We were ready to go to the festival, some ten minutes after our Hummer friends left the vehicle. They were surely enjoying themselves by now.

We walked to the end of the parking lot but had trouble accessing the walkway below. There was a steep hill that we had to walk down to get to the walkway. Not a problem without a wheelchair, but very steep without a pathway. With a wheelchair, the weight of the person causes the chair to accelerate as you go downhill making it hard to steer since you need to pull back hard to control the chair. The dirt path was damp and the wheels were sticking in the mud and not able to roll smoothly. I sure could use those strong men now. There was no other way to get from the parking lot to the festival. And Dear Son was so excited. Finally, we made it. There would be several other people that I would see having the same difficulty we did on the way back.

We got to the balloon launch but the launch was cancelled due to the weather. It was just too windy. In the meantime, Dear Son needed to be changed. At the festival, there are all Port-A-John’s so we walked down the street to the nearest police station to use the accessible washroom. Accessible means that the doors are wide enough to get a wheelchair in the door and wide enough to get a wheelchair in the handicapped stall. It does not mean that if you can’t stand up or wear a diaper that there is a bench to change them on. No, it means that I have to bring lots of changing pads that I need to lie on the floor so I can lift Dear Son out of the wheelchair, put him on the ground, change his diaper in full view of everyone and then lift him back into the chair. Easy when they are five years old, maybe ten years old but now that Dear Son is 14.5 years old, I can’t deadlift his 136 pound body off the floor.

That particular year, I changed Dear Son in the washroom on the floor. Today, we had another invitation to go to the festival for his hot air balloon tethered ride. Since he’s getting so big, I opted to stay home.

Independence Day means a lot of things to a lot of people. To the disabled, Independence Day means having a day when you can go out somewhere and have fun and not have to deal with all the stresses of everyday life. Kind of like a holiday for us able bodied folks.

I look forward to an Independence Day, when the disabled can do the same things like the rest of us and life is easier, just for one day. In the meantime, I’ll try to spread the word that all hospitals and public places need to have a rest room that everyone can use, a bench to change people on, a curtain to pull around for privacy and just the basics.

Some people will be quick to say that we can’t afford to make such enhancements for such a small group of people. What they don’t realize, is that when you make these changes, a lot more people use them, than just the disabled. Women with small children might change them their, people might sit on the bench, etc. Hmm…maybe that’s why it’s called “universal design”.

Monday, July 03, 2006

Advance Directives-Part III: An Interesting Perspective and the Wrap Up

This is the conclusion of a three part series that chronicle the discussion surrounding Advance Directives, that took place in June during Dear Son’s most recent admission to Big Academic Medical Center for a second “suspected” MRSA hospitalization in less than one month.

Ex Utero posted a comment on Part I where he stated that he wondered what patients or people wanted to hear, during these conversations. So I decided that I would describe what types of information would be most helpful to me in this situation.

I think the first thing is understanding that putting directives in place for yourself and putting an Advance Directive in place for your children are two totally separate things. Putting an Advance Directive in place for a child, means essentially you are deciding when they will die. It’s a horrific place to be in and one I doubt most mothers or fathers could live with. I suppose the real issue boils down to the futility of his life-will the child get better or are the life saving methods that need to be employed and the pain and suffering that they cause him, worse than letting his die. Notice I did not say anything about the quality of Dear Son’s life. Dear Son has been severely disabled all of his life, so talking about his disabilities is a non-issue.

The next issue is understanding death itself. What will it look like and what exactly happens? As a physician, you have seen death many times, but I need to understand it better. I want to know if Dear Son is going to be in pain or going to suffer and how to minimize both the pain and the suffering. I know that when Dear Son has trouble breathing, his breathing gets extremely labored and at some point, it gets downright scary when he begins to gasp for his breath. I usually call the ER doc into the room at that point. This is not the last image I want to see of my son. I need you to tell me that it will be peaceful and that he will not suffer.

Finally, and this is most important, I need to know when it’s futile. I think Neonatal Doc talks about parents wanting them to do everything for their baby and pounding the lungs until they have every last breath out of them. Certainly, no mother or father wants to do that, but how do you know when you cross that line? How does a lay person know that? How am I supposed to know when it’s time to say, “enough is enough” and let my child die with dignity? I don’t have enough medical knowledge to know when the test results are coming back bad enough for this to be the case. Yes, I know the results but I don’t always know when it’s considered futile or when death is imminent.

What I want is for the physician to tell me this: “We have done everything possible for Dear Son. Based on his blood gases (or whatever test results are appropriate), his body does not appear to be responding to our efforts. While we could place him on the ventilator again, I think we would only be prolonging his pain and suffering; I am not sure how much more Dear Son can handle. I am sorry to tell you this and wish it could be different, but I think it’s time to say good bye to Dear Son and let him go peacefully in his mother’s arms. You have done everything possible for him that I would do for my own child. I think we should remove the Bi-PAP and I’ll make him comfortable. This means that he will not be in pain and he will not suffer. I will then give you and his father some time alone with him. If you don’t have any questions, then I will make him comfortable, remove the oxygen and give you that time.” I would also want some private time holding my son and talking to him alone in those last moments.

Finally, I received an interesting e-mail from a friend of mine, who also has a disabled child. We live several thousand miles apart however we write frequently about life in general and then about questions specifically related to issues with our disabled children, issues which we would never discuss with most of our other friends. In the midst of the hospitalization, I sent her an e-mail describing my turmoil over the choices as it related to Dear Son. After a few days, she responded with the following e-mail:

“I have thought a lot about your question down there regarding how far I would go to prolong my child's life. I see that you have some very specific questions - regarding making him comfortable and such - that you need to get cleared up before you can make any real decisions. I think that …..

Interestingly, I just watched a special on PBS called, "A Lion in the House." It was a series that followed children with cancer and their families for a period of years. I had never seen this show previously - I think there were seven episodes - and this was the finale. Normally, things like this show are just too painful for me to watch, but something inside of me told me to watch it. So, I did. I cried a lot. The show was heartbreaking. And you saw some of these kids die. Some of their parents went through heroic measures to save them. They kept getting them the chemotherapy, or whatever.

I thought of you. I know that you want to know you've done all you can for Dear Son. And I think a lot of these parents felt the same way. But, after their kids died, the show would check back with them. And several of them said that they'd wished they'd stopped trying sooner. I think it is easier to see this in retrospect, of course. But they felt that it benefited no one and was actually more harmful to their children to keep putting them through the medical stuff. It was hard on the kids emotionally and from a psychological point of view, they felt. And one of the kids' nurses talked about this a lot. She thought that it was really important to think about what was happening to the kids from an emotional point of view - having them go through all that they had to.

I thought that this was an interesting perspective. I would always want to say, "I did all I could for my child." And I would at least have that peace. But I never thought about looking back and wishing that I'd stopped sooner, as several of these parents did. Because I guess they knew that the child was going to die. And now that the child had died, they realized that it wasn't all that important to give them more time here, when the time is spent in that way.

It has really made me think a lot about this subject. And I've been thinking about it a lot since your e-mail. And I know we exchanged several long e-mails about this subject a long time ago.

I know that as parents, we do the best we can. There are some things that a parent should never have to decide. This is one of them. I would like to tell you that I would not let my child suffer. I would like to tell you that I would be able to separate out what is best for my child and what is best for me. I would like to be able to tell you that I would make the decision, stick with it and go through with it. But Dream Mom, I just can't. I just do not know what I would do if I were in your situation. It is a hell I never want to enter. And I'm sure that it is a very lonely place.

Please know that I am here for you. I am sorry I cannot give you better thoughts on this matter, as it is so very important. But I think that you are doing the best job anyone could do under the circumstances. I guess my best advice is to put Dear Son’s needs ahead of your own. Make the decision based on his situation - and not on your fear of what will happen to you when he dies. That is really the only advice that I have. Because when the time comes, you will know that you made your decision out of love and not out of fear.

One of the mothers of a survivor in this show tonight said that this ordeal taught her she can deal with anything. That it showed her how strong she is and that nothing is too much for her to handle now. I thought of you when she said that. Even if you wonder about your strength, Dream Mom, please know that I do not wonder about it. I know you have it and I know that you will find it when you need it. It is right there, in your heart.”

Saturday, July 01, 2006

Advance Directives-Part II: It was just my imagination, running away with me…

This is the second of a three part series that chronicle the discussion surrounding Advance Directives, that took place in June during Dear Son’s most recent admission to Big Academic Medical Center for a second “suspected” MRSA pneumonia hospitalization in less than one month.

The discussion caught me off guard. I had thought a lot about directives in the last nine months but could never bring myself to taking action of any kind. I prayed for the chicken’s way out, that the Lord would take Dear Son when his time was up and that I wouldn’t have to make any decisions. I just can’t imagine that I could actually issue any directives, directives to take away my Dear Son forever. No, I just can’t imagine that. What mother could do that? Not this one.

After our conversation, I continued to get sicker. I was already feeling horrible and the discussion only added to my misery. Everyone around me kept asking me if I was glad that this hospitalization was going much better than the last one, but they just didn’t know. On the surface, yes, Dear Son wasn’t vented, but behind the scenes, well, that was definitely worse. I barely had time to go through last month’s medical bills, the total billed charges which were close to $200,000. All of which would be paid, no doubt, after discounts, but still, it was a big number. And a lot of paperwork for me to boot, paperwork that was piling up on my desk at home. This admission would be another ten days and I refused to calculate the numbers. No, I couldn’t let the numbers enter in the equation, but I can’t ignore them either. I can’t have a $200,000 hospitalization every month.

I begin to go through the scenarios twenty four hours a day. No, I can’t imagine coming here again. No, I can’t imagine living through another vent admission with Dear Son. I can’t imagine seeing my son lying like a corpse on a hospital bed, lifeless, with tubes and needles in every possible part of his body while his body slowly shuts down. No, I can’t imagine ever putting a trach in him. Not only do I have a weak stomach but I can’t begin to imagine the conversation that I would have with Dear Son telling him why we had to cut a whole in his throat while looking him in the eye. After all he’s been through, it wasn’t going to happen. So then, there was the big one. Was I going to put a Do Not Resusitate (DNR) in place? That’s what she wanted to know.

I tried to imagine exactly what that meant. Not in the literal sense, but just how that might play out. I tried to imagine coming to the Emergency Room, with Dear Son breathing fast and hard, having another MRSA pneumonia, and then at some point them asking me or I tell them that he has a DNR in place. The ER fills up fast, as it always does and somehow, in the midst of all the people, Dear Son has trouble breathing, looks me in the eye to help him and someone yells out in the Emergency Room that he has a DNR and not to help him. Dear Son hears this, looks at me, gasps for his last breaths and dies looking me in the eye and knowing that his mother didn’t help him. That’s the image that would replay in my mind over the next six days until I could get some answers. I couldn’t stop thinking about it. I realize that it might seem like an odd scenario, but if you’ve ever been in an ER, things tend to get really crazy, when it gets that busy. It’s not like I can go on-line and order a book right now.

I can think of nothing else over the next few days. It’s like a giant elephant is sitting on me and as much as I try not to think about it, as soon as I open my eyes, I see the giant elephant again. It just won’t go away.

I call the secondary insurance nurse and speak with her briefly. I ask her if she has someone I can speak to about this. She calls me back and arranges for me to speak with someone from a hospice organization. The nurse has been talking to me about hospice for over a year now but I am just not ready. It’s kind of like going casket shopping when you have stage four cancer-you know you need one but you don’t look forward to shopping. I take her phone number and decide to call her once I get out. I really need to speak to someone face to face, someone that knows me. I mean, how do you ask someone over the phone to describe in graphic detail, just how someone dies? What I really want to know is about the pain and suffering. Is Dear Son going to be in pain? I can’t live with that.

Next, I decide to have a conversation with the Family Advocate. The Family Advocate at Big Academic Medical Center is a man who I have spoken with on many occasions and who I can trust. I know he has just written a book on this topic and has been searching for a literary agent. I e-mailed him a few months back to see if he had found a publisher and to see how things were going with his book deal. He has his Master’s in Social Work and should be a good source of information. We arrange a meeting for later in the week.

In the interim, I run into the former Attending Doc from last month’s MRSA pneumonia. She’s the one who recommended the blood transfusion and who saved Dear Son’s life. She’s also the one who brought flowers for all of the mothers in the PICU on Mother’s Day when I thought Dear Son was going to die. How could I ever forget this woman?

She runs into me getting on the elevator and asks why I am here. After playing some catch up, I ask tell her about the conversation and ask her for specifics. I want to know, what exactly happens when they die. How does death happen? Are they in pain? Is he gasping? What? She explains that they can give him oxygen and morphine for the pain. I want to know how much oxygen and what kind. Are we talking a nasal cannula, Bi-PAP machine or what? What is the cut off? We talk a bit more and then she gives me some additional information. I learn that the Attending Doc who spoke with me also sits on a Pediatric Medical Ethics Committee. I tell her I will probably speak with her again once I get some additional information. I make sure to thank her again for the flowers and tell her how much it meant to me that she thought of me on Mother’s Day, when I thought my son was going to die. I’ll never forget that moment when he was so close to death and then she brought in the flowers, it was like the sky just opened up and things were going to be all right.

I finally meet with the Family Advocate, some six days after the conversation with the PICU Attending. He walks me through a lot of things, namely the death. He tells me how long the DNR is for, how it is negated and some other things. He also tells me what to say. Apparently, when they are at the end they go through a stage where they are uncomfortable and begin to panic, then you need to ask for something to make them “comfortable” and not for “morphine”. The part about them being uncomfortable and panicking made me uneasy. I ask him the big question, “How do you know when it’s time?” He says, “It’s time when they don’t get any more pleasure out of life.” “Dear Son is not there yet.”

I leave the room, relieved, relieved he has answered a lot of questions for me. I thank him for his help. I can sleep now that I have some answers.

I think long and hard over the next few days. In the past two years, Dear Son has lost his ability to walk, his ability to sit and most recently his ability to eat anything by mouth. He has two things left, he can still process his food and he is happy. I never imagined in my wildest dreams that life would boil down to this. I just can’t imagine ever living without seeing that smiling face every day. But it’s not just about me anymore.

I decide over the next few days that I just can’t put a DNR in place at all. I just can’t live with myself. I need to help Dear Son as much as possible. The only decision that I allow myself to make is that if he gets this pneumonia again, that I’ll wait until the physician tells me it’s time, that he won’t make a recovery and then I’ll worry about it then and decide what is best. That’s all I can do. In the meantime, I pray. I pray that I will never have to make these decisions. Sometimes, we are too smart for our own good. We can save nearly anyone and yet in the beginning people have to “choose” life and in the end, we have to “choose” death. I don’t get it. Oh yes, we are sophisticated all right.
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