Halloween

Jack enjoyed Halloween from the comfort of his bed ... SURPRISE!! Can you hear the sarcasm? Jack's nurse, Kristi dressed him up as a vampire and to be honest, the pictures creeped me out, so I deleted them from the camera. Sorry, no picture of Jack this Halloween. Hilary went to a friend's house to watch movies (no picture of her either). Eric and Mary went with their cousin Shannon and friends. Mary (far left) and friends are from Napoleon Dynamite (I've never seen the movie, so I'll leave it up to you to guess who is who). Eric was a combination ghost and pirate. He really got into Halloween this year. The last picture is my sister Joan enjoying the nice Arizona evening. Hope you all had a grand Halloween!

Jack is ready ...

to get out of bed. He and I had a conversation tonight. I told him he has one month left before he can get out of bed and get to the mall (ok, technically, he has more than a month, but at least the end is in sight.) Here's what Jack had to say.

Yielding

I am re-reading a book titled "Changed by a Child", a book of companion notes for parents of a child with a disability. I had flagged the note titled "Yielding" and, as I was reading it again, I realized why. This note epitomizes my personal struggle over the last 8 years very well. The process of yielding is continuous. I am constantly yielding, then trying to regain "control", then yielding again. With everything that has gone on the last few months with Jack -- from his surgery and all its complications to my present dealings with the school district (which is a very uncomfortable situation right now) ... it's again time to "yield".

Yielding

Looking at what might be ours if we surrender to the fact of our child’s disability and its impact on our life, looking around at the roles others in a similar position seem to occupy, we might immediately protest: “Hey wait a minute. I don’t want to be exceptional, special, an advocate, political, a pioneer, a teacher, an expert on disability, brave, anguished, stigmatized, toughened, changed, holy.”

To surrender means to yield to the power of another; it carries strong connotations of defeat and ignominy. But to surrender also means to give up resistance. When we cling to our self-will we are in the ludicrous position of putting ourselves in charge of things that are out of our control. On the other hand, when we give up our will, when we give up resisting something we can’t change anyway, we open ourselves to a new set of choices. Actually, we never abandon our ability to will and to choose. We only shed the will we are presently exerting, because it no longer fits the circumstances of our life. Like a molting lobster, we give up the too-small will and grow a new set of intentions that fit.

Having given up our will that our child will walk, or see, or go to college or continue the family name, having embraced the new choices and undertaken new actions, we may discover that what we are doing is, in fact, exceptional or pioneering. We may find that our new, bigger shell is that of an advocate or an expert.

Weekend Activities

We kept busy this weekend with the usual flurry of activities ... you know, laundry, house cleaning, grocery shopping and, of course ... changing videos every hour on the hour to keep Jack entertained. Actually, we did some fun stuff too. Mary had an Irish dance competitition and she did quite well - even got a couple of first places. She will dance in a competition in Portland next month, but I won't be able to go with her since I used all my vacation time at that wonderful vacation destination known as St. Louis Children's Hospital! We also painted pumpkins today - Jack is posing with the Elmo pumpkin.

Since Jack is doing so well, we are weaning down his vent settings some. He had such a terrible year last year with a lot of pneumonias that his settings were higher than usual. However, now that Jack is straighter and his abdominal contents are no longer being shoved into his lungs and he is healthy and infection-free, he is a bit over-ventilated. Although Jack will never be vent-free, we don't want him to get too much vent support because being over-ventilated can change the blood pH - although it's not as damaging as being under-ventilated (per Jack's former pulmonologist who I still rely on when it comes to Jack and his vent). I turned his settings down to what they were a year and a half ago. He seems to be tolerating it fine. Now, who am I going to get to write the order so that the nursing agency won't have a fit?

Thanks for checking in. Life is uneventful ... life is good!

The Broviac is Out!

We saw the surgeon today at what I thought was an appointment to schedule the broviac removal in the OR. Instead, he just "ripped" it out right there in the office. Ouch! Although the nurse said the surgeon would numb up the area before he pulled it -- he didn't. It really upsets me when people discount Jack's ability to feel pain just because he can't talk. Needless to say, Jack cried after the broviac was pulled, but he was better by the time we got out of there. Yeah ... no more broviac!

The nurse was astonished at the size of Jack's MIC-KEY. She said they put longer tubes in newborns and that Jack's balloon was probably in his tract (for you non-medical people, that would be the space between where the tube goes into the skin and the stomach). The balloon should be in the stomach. We upsized significantly to a new and improved and longer "Mini" g-tube (is that Mickey's better half?)

All in all, it was a productive appointment. Have a great evening!

Perspective

“We don’t see things as they are, we see them as we are”
Anais Nin

From where you are, you have all insisted that I made the best decision under the circumstances. The amount of confidence you have in me is a little scary, but I certainly appreciate your support. From where I am, as someone who is very tired and very angry, I guess I’m focusing on all the wrong things. I don’t recall being this angry since Jack left the PICU 7 years ago attached to a bunch of equipment he didn’t have when he entered the hospital. I always believed that when you left a hospital you were supposed to be better off than when you entered. I suppose what constitutes “better off” is all a matter of perspective. In any event, I need to get to a “happy” place and try and remember why we had the surgery done in the first place. It’s time for a major attitude adjustment!

The picture is of Jack getting his nightly head massage from me. He loves his head massages. The other one is of Mary doing what we do around our house for fun … race around in wheelchairs :-)

Have a great week!

Comparison

X-ray #1 is Jack
X-ray #2 is Anthony

My friend's son, Anthony, had a spinal fusion surgery done less than 2 weeks ago at UMass Medical Center. She gave me permission to share his x-ray. Anthony's surgeon used the wires that our local ortho would have used if we'd had the surgery done here. I might add that Anthony is home from the hospital, requires no body brace and is SITTING in his wheelchair already.

Okay, I will admit that comparing Jack and Anthony is like comparing apples to oranges. Jack has a neuromuscular disease, "extremely poor bone quality" (to quote the operative summary) and had a 90 degree curve (corrected to 52). Anthony has CP, better bone quality than Jack and had a 70 degree curve (corrected to 20). But, I thought it interesting to show the difference in techniques and the recovery period. It makes no sense to make myself crazy over this whole thing, but I am. I might also add that Anthony had a compassionate and personable orthopedic surgeon and Jack did not -- which is no doubt the crux of why I am having such a difficult time coming to terms with what was done to Jack and whether it was in fact the "best" procedure for him. Maybe if I'd had a surgeon with a little compassion and empathy, I'd be comfortable with my decision. Anyway, it is what it is. I'm just glad Anthony is doing so well and just a little ticked off that Jack's been through hell and he's still not where he needs to be.

There, I feel so much better now!

Thanks

Just a note of thanks for continuing to check in on Jack and for leaving comments (thanks too if you only check in, but don't leave comments). It means so much to know that you all care about us! Nothing new to report, Jack continues to lay in his bed 24/7 and be happy. Come to think of it, being confined to bed for a few months doesn't sound so bad after all! Where do I sign up?

************
Pat, I'd love that Rx for Hawaii :-)

Haircut

Jack got a much needed haircut yesterday. Thanks Michelle!

"Good Times"

As I was driving to work this morning, I was thinking about my comment in my prior entry regarding how long the "good times" will last (I drive close to a hundred miles a day by the time I get my kids to school, get to work and back home, so there is a lot of time for thinking). I would never have believed 8 years ago that having a child with a debilitating disease, lying in bed unable to move, hooked to a ventilator, unable to eat or breathe on his own . . . but having good "numbers" and a smile on his face would equate to "good times". Life is just so warped, you know?

In any event, the "good times" continue because Jack's x-ray looked marvelous. The ortho's comment was "that's a LOT of screws". He did say that Jack should be able to get out of the body brace in two months . . . before Christmas. Yea! More "good times".

Wishing all of you "good times" ... whatever that may be in your world.

**Even more good times - we received authorization today from Medicaid as secondary insurance (primary insurance already approved 2 months ago) for a ceiling mounted track lift system for Jack. That is HUGE "good times" in MY world :-)