Friday, June 02, 2006

Part IV-The Conclusion

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

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

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

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

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

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

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

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

10 comments:

mary said...

Go on speaking with your experiential wisdom, Dream Mom. The only way to explain that high needs is not a measurement of "quality" is to keep on explaining it until people who use that measurement begin to listen. Go mom. Go Son. :-)

Anonymous said...

Thank you for sharing your story...I'm going through a bit of crisis of my own right now that seemed insurmountable to me (OK, it still does at least a little)but you reminded me that I am so blessed to have a healthy 17 almost 18 year old son and the rest of it, well its all BS that will work out somehow. I keep you both in my prayers, I am so grateful for your generosity in sharing yourself and Dear Son.

purplequilter said...

About people who complain about the little things, forgetting that their issues ARE little things... I know what you mean. I used one phrase a lot in the first couple of years after DH's brain injury, as we were dealing with stuff that most people can't imagine facing--"it's not their reality." I just reminded myself that reality is subjective and independent, as unique as each person's situation. Insight and empathy for others' situations is rarer than you'd think, or wish. But the phrase "it's not their reality" kept me from wringing quite a few necks back then, or lashing out at people who were just wrapped up in their own self-absorption.

Bless you and your perseverance, in the face of trials most of us will never be able to fully imagine.

Danielle said...

I enjoyed readin all of the parts to this latest story, however I especially enjoyed this last commentary. Thank you for sharing!

Wrkinprogress said...

I was just thinking about quality of life issues recently, as we visited my sister-in-law who is mentally/emotionally disabled and lives in a group home. She is happy, she is as productive as she can be, she enjoys life and is far less disturbed and stressed out than most 'normal' people. If you ask me, in some ways, she is blessed for that reason.

As always, bless you, DM, and bless DS. You and he bring grounding into my life, and clearly that of many others. Rarely do most people have the opportunity to focus in on what really matters -- love. You remind us of that on a regular basis, and I, for one, thank you for it.

Much love,
WIP

oncRN said...

i marvel at your ability to articulate your feelings so well on the delicate subject of dear son's life and his death. none of us embark on parenting ever dreaming such difficult times will come. i,too,hope you never have to 'let' him go...but in the truest sense, you never will.
peace to you
oncRN

zoe said...

One of the hardest things when you are going through a crisis is when people complain about trivial things. I learned years ago that who was I to judge anyone on what their "hard" felt like even if it looked ridiculous to me. Maybe to them it did feel just as hard as my hard was. For some reason this helped me keep a perspective. I am very happy for you that Dear Son is home and on the mend and that you can kiss him nonstop-- he is probably covered in lipstick these days!!

Mete said...

You are so right. Much more eloquent than I am, but I know exactly what you mean.

My son's daily life is close to what some might call "vegetative". We call it "happy". He is comfortable, calm and so loved. We know his life is full of quality. And the quality he adds to ours is immeasurable.

I hope you both remain healthy and strong and can enjoy this summer without any more hospital visits.

Ex Utero said...

Dear Dream Mom,

by God your writing is something else... areally excellent series. I think every neonatologist and PICU doc ought to read your stuff.

If I may, I'd like to offer a counter narrative for some of your readers to consider. It's one I posted a couple months ago and it is by no means meant to diminish the eloquence of your piece. Only perhaps to offer a comparison perspective.

If your willing to allow me to post the reference, It's called Holding on to Hope and there are two parts:

http://talesfromthewomb.blogspot.com/2006/04/holding-on-to-hope-part-1.html

http://talesfromthewomb.blogspot.com/2006/04/holding-on-to-hope-part-2.html

I hope you don't feel that I'm trivilizing your personal journey by saying this, but your blog is an excellent teaching tool and I do something called the medical student blog crawl, in which I have them garner topics to research and think about from the blogosphere. I think you are an exceptionally eloquent spokesperson for parents of severely disabled children and intend to have them reading your work as part of our discussion on neonates who survive severe illness.

Cathy said...

I could only repeat everything that everyone else has already said.
My thoughts and support are always with the two of you.

Cathy A

Related Posts Plugin for WordPress, Blogger...

Blog Archive

StatCounter