A Note of Recovery

   Last night we finally got to a turning point in Michael's recovery.  My husband called the nurses' station to get our daily update on his condition and then got transferred to speak to Mike directly.  The nasogastric tube is out.  Apparently it was removed several hours after my departure from Tuesday's visit.  He hasn't vomited or felt nauseous since its removal which is a very positive sign.  He told us he's been up and walking (the nurse verified this) and has cut way back on taking pain medication.    As anyone knows who's had surgery, the use of pain medication (while very necessary in the early days of recovery) impedes natural healing of the body.  I know that Michael was using this medication more because it made him drift off into sleep to get away from his personal hell rather than to alleviate unbearable pain. 

 

It really sounds as if he's doing what he needs to do and things are progressing in a forward direction.  It's going to take a long time but any positive news regarding his recovery is the best thing we could ever hear.  This is Michael's 27th day in the hospital.  He's been in the room he's in now for 20 days and spent 7 in the hospital closer to home.  I want my child back.  He wants to come back.  He's thoroughly sick of hospitals and everyone in them and they're probably pretty sick of him (and us) too.  Actually though, the common opinion of his nurses is that he's brave, a real trooper and has handled himself amazingly well throughout this ghastly ordeal.  And so he has.

 

 

A Visit

Today was my one day off from work this week. Since I had to work this past weekend, I hadn't seen my son since he came back from surgery last Friday afternoon. I decided I would drive down to the big city myself to spend some time with him. This is a more momentous decision than you might think. All these many trips we've made to San Francisco since the beginning of July, my husband has been at the wheel and I've been cringing and cowering in the passenger seat. My husband is an excellent driver; it's me!

Somewhere along the time line of my life, I became one of these people who fear driving on freeways or highways at super speeds. Thoroughfares where drivers seem to interpret the name of the freeway; i.e. Route 80 or Highway 101 as the speed limit. There was a time thirty or so years ago when I used to zip up and down Highway 101 when I visited my parents who lived in Sebastopol on a regular basis and we lived in San Francisco. I never thought a thing about it. The simple fact is that when you stop doing something on a regular basis over time, you get out of the mind set, the habit and driving skills it takes to handle the traffic. (Traffic which has multiplied in the last three decades, let's not forget.)

My husband's job of the past few years has turned him into an excellent driver. Still, I have my personal fears as a passenger and try with all my might not to flinch, brake or cry out loud when I see something that I think needs these reactions. I've learned to try hard to knock it off because these things are exactly what would lead us to disaster. In spite of these fears, I wanted, needed, to see my son, Mike. Yes, that's his name, Michael.

In a nutshell, I made it to his hospital room and back home again. We're always tougher and made of sterner stuff than we think, aren't we? Apparently, I am. My personal mettle's been put to the test this summer and that is no lie. It wasn't so much a visit as being a visible presence. Most of the time, I sat by his bed and read my book as he drifted in and out. Mike is still hooked up to many different tubes. However, the oxygen and catheter tubes are gone and that's a little something good. The nasogastric tube is still firmly in place pumping out lots of nasty looking, greenish-black bile that won't pass through his intestines. If they took this tube out now, he'd just throw up the bile so he has to wait until the fluid coming up through the tube clears up. He has a feeding tube inserted into his stomach down through the other nostril. Nothing's been introduced into this yet but will come in time. The PICC line is still in and his diet continues to consist of a bag of sodium chloride, a bottle of lipids and a large bag on T.P.N. (Total Parental ?! Nutrition) Yum!

He needs to get out of bed, move around and walk. I impressed this upon him while I was there and we took two walks while I was there. He needs to do this on his own. This is what he has to do to get things moving.He's angry, sad, frustrated, fed up and just wants to sleep all the time to escape the pain and boredom of the life he's been living for such a long time now. I understand all that and I tried to impress upon him how important it is for him to get up, get moving on his own. Make a schedule, set a goal. Yeah, yeah. He knows this is what has to be done and yet, doesn't want to hear it. I understand that too. How long can you listen to, "hang in there, son." "This won't last forever". "Be strong, be brave, this will come to and end". And so on. How would any of us deal with hearing this positive, supposed uplifting speech day after day? Jesus! This guy is so young. He just turned 18 before this hell on Earth began. I look at him and all I see is someone who's half there, wasting away and looks like something from The Borg. Any Star Trek fan will know what I mean. Please, please send good thoughts our way. We could all use them.

 

A Not So Happy Birthday

August 14, 2006. Today is my birthday. Today I turn 53 years old. All my life I have had the privilege of enjoying the celebration of my own special day. It has never been overshadowed by any kind of holiday (unlike my poor husband's birthday which falls two days after Christmas when everyone's tired, broke and had enough). Therefore, I'm a spoiled brat who is mourning the proper festivities of MY day, dammit!

Over the years, I've been wined and dined at fine restaurants, spent many birthdays camping at some of California's beautiful lakes and, more recently, we've spent the day at our special hot springs and my husband makes a fabulous lunch for us. This year, this time, my birthday is nothing more than another long day waiting for my youngest child to get well and come back home. This is the only gift I want for my birthday. By the way things look at this point and judging from the brief conversation I had with my son about an hour ago, it looks like I'll be getting the present I'm wishing for most...belatedly.

I have always looked and felt younger than my chronological age. I don't anymore. When I look at myself in the mirror these days, I realize with a mild shock that I look more like my actual age than ever before. This entire nightmare with our son has aged both my husband and me by what feels like ten years. We're so tired, so worn out, so emotionally played out. I hope this awful period in our lives will end soon.

An addendum: Wouldn't you know. My darling daughter and her family came to visit this evening with birthday cake, love, support and a great gift that I really needed. Details later. I thank the Gods that be for my wonderful daughter and her family and the love and support that they give so selflessly. This is why we have children!

The Nightmare Continues...There may be a Shining Light at the End, however...

On Wednesday, August 9, one of the G.I. specialists who's been tracking my son's problem called me at work to say that she and the doctor who performed the initial laparascopic surgery back on July 7 (which seems like a million light years from now) were going to meet with my son on Thursday at noon in his room to discuss what's been going on and what options were available to him. Oh, how things change so suddenly when "the patient" has become an adult. She outlined what they were planning to do do and said the final decision was up to my son. No problem. Son, father and I all were in agreement  for a more aggressive surgical approach to bring this nightmare to a close. The final ball to the decision landed in my son's court and he asked to do whatever it would take to escape from this hospital hell in which he's been incarcerated since his graduation from high school.

When I got this phone call at work (and had to rush outdoors to enable my cell phone to work) and received this message that someone was actually going to do something, I felt as if the weight of twenty 150 lb. anvils had been lifted from my upper back and neck region. This was all I wanted...someone to do something!! Finally, this past Friday, August 11, my son underwent a second surgery to fix what obviously wasn't taken care of the first time around back on July 7.

Once again, my husband and I made an early morning pilgrimage to San Francisco. His surgery was scheduled for 7:30 AM and we wanted to be there to send him off, wish him well, tell him everything was going to be okay. There's something in the parental makeup that deems it necessary that even when your child is oblivious to your presence during a procedure, you know that somewhere, deep down within, it's essential that your child knows you're there, on the sidelines, waiting...waiting...waiting. After he was taken away, we took ourselves down to the lobby to wait through the surgery and recovery time and at last, six hours later, at 1:30 PM we met up with him again back in his room.

This procedure was more involved than the last. This time, two doctors worked on him; one on the inside and one on the outside. The scar tissue which had been removed from his duodenum had reformed and had to be cut away once again. This time, a sealant was applied to each side to prevent future formation. A tube was inserted through the mouth, into the stomach and down through the duodenum the size of an adult's index finger; basically a probe to ensure that the path was clear all the way through. The outside surgery will result in a four to six inch vertical scar on the belly. A battle scar, to be sure.  That's okay; I've got one of those myself.  Once back in his hospital room, our young man was hooked up by tubes to so many things that it took me a while to sort them out. He was on an oxygen tube, delivering 2 liters. An I.V. of simple saline was running into his PICC line. Another I.V. hooked up to a self-dosing pain medication machine was attached to the top of his hand. The much feared. detested nasogastric tube was threaded back through one nostril into his stomach and a feeding tube was threaded into the other. When I talked to my husband this morning, I learned that a catheter had been put into place because he wasn't voiding. Other than the N.G. tube, this was something he feared the most and I sure hope he was off and away on a cloud of strong pain medication when they introduced this awful thing. Catherization is bad enough for a female; I can't imagine it being done to a male, especially a young 18 year old!

I had to go to work this weekend. I was scheduled to do so and was very lucky to have gotten Friday as my scheduled day off. My department director has been most sympathetic and accommodating throughout all this time in juggling around my work days to give me time to attend to personal problems. My husband is always off on weekends and went down by himself to the city to visit our boy. He will once again spend the night at his brother-in-law's and be there for our son on Sunday and return home to me on Sunday evening. I have used up all but about 7 hours of sick time. Likewise vacation hours. My vacation time (as well as my husband's) has been used up this year making trips to doctors and hospitals. In the past five weeks, we've been to San Francisco about 7 or 8 times, All we've seen are hospital rooms, E.R. rooms, lobbies, hospital cafeterias and the medical center parking garage adjacent to the California Pacific Medical Center.

The current plan now is that if all goes well, our son will be released to home in a week. That would bring his total hospital stay to 21 days at the facility where he's been staying. Add seven days he spent prior to his ambulance transfer from the hospital closer to us to this place and that makes 28 days--four weeks--one month. Not much of a summer for a young man who just graduated from high school and turned 18, is it?  And that doesn't even include the two hospitals stays before this.  What a summer.  This will go down as one none of us will ever forget.

 

Saturday Six...it's been a while

1. How many different time zones have you lived in? Which one would you most like to live in?

I've lived in two, on both sides of the country.  Which would I rather live in?  It really doesn't matter, does it?  Where you live at the time in whatever time zone that is works just fine.

2. What is the current setting of your home's thermostat? Do you adjust it up or down based on the time of day, or leave it at one setting at all times?

During the summer months, my thermostat is turned all the way down.  I don't have air conditioning and have nothing to regulate during the warm weather.  I only tend it to it during the cold weather.  Off at night and when we're at work and 68 degrees at the highest during the coldest temps.

3. Go to your bedroom closet (or the closet in which you keep the majority of your clothes. Take a quick glance: what color do you see the most of? Is this color your favorite color? If not, why do you have more of it than your favorite color?

These days, I see blues and shades of purple and cranberry.  Are these my favorite colors?  Not really but they're what I've accumulated in the way of work uniforms and for that purpose they serve just fine.

4. Take the quiz: What kind of house are you?

Well, so much for this quiz.  Yeah, I'd love to dwell within something that resembles a gigantic mammal's stomach!  I simply must get in touch with my personal architect so we can get right to work on making this happen.  I can't wait to move right in!!

5. Imagine your dream house: how many stories would your ultimate home have?

Okay, I imagined my dream house.  That dream is over.  Let's get real.  I'm about to turn 53 and my husband is 55 with painful knees, joints, etc.  I'd say a one-story house would do quite nicely.  But I have to say that there is something quite lovely about going upstairs, to bed.  Alas, when I was living in the house that provided that aspect, I was young and unattached!

6. Ripped from the Headlines: An under age teenager decides he does not want to undergo a particularly rough regimen of chemotherapy to treat his cancer. With his parents' blessing, he decides to pursue an alternate treatment to be supervised by a clinic that is outside of the country. Should a court intervene and force the teen to undergo the "traditional" treatment? How much does the prognosis for successful treatment with the chemotherapy affect your judgment?

No, I don't think "a court" should intervene and I would applaud the family in allowing  this teen to make this decision and stand by with their support.  No one knows how anything will turn out and we should all be allowed the freedom to choose our own way about how we wish to deal with health issues.  Obviously, teen and parent(s) have discussed the pros and cons prior to coming to this decision.  No government has any right to dictate to any human being what they should or should not do regarding personal health-related issues.

A Mother's Rant

Sometimes I think about how I will remember this summer for the rest of my life. Cliched titles and phrases come to mind such as "The Summer of Our Despair", "The Summer that Never Was" or, to use the ever popular current vernacular, "The Summer That Sucked--Big Time". Here's a phrase I fervently dislike and never use but it seems to fit how my family's feeling these days.

I'm a Leo, a summer girl who generally glories in these golden months. This is one of the seasons I look forward to all year very much. Here we are into the first week of August already and I feel as if summer hasn't even gotten off the ground yet. Last fall we had to tear down our backyard deck because in its old age it had become a major safety hazard. Winter and its lengthy rainy season came and went. Once the dry, warmer temperatures finally returned, our priorities shifted to what the hell was going on with our son.

There's still no deck. We haven't been eating alfresco dinners as in the past years. I haven't even opened up and set out our two comfy reclining lounge chairs. I haven't set up the little covered nighttime niche outside our large living room window with pretty night lights and candles for after dinner, early evening drifting and dreaming to enjoy the cool night air following a hot day.

Life comes to a standstill when an immediate family member is seriously ill. Everything ceases except going through the motions of what one must do to make it through a day of work, eat some dinner because it's necessary but there's no appetite, fall into bed for a fitful sleep and get up the following morning to do it again. I now know, and always suspected, I could never be one of these mothers who tend to their comatose child lovingly on a seven day, 24/7 basis. You know, the type who reads to their unresponsive child, manually moves arms and legs to provide range of motion and all the time maintaining composure to the world. Maybe this is the stuff you only see in movies. Maybe I've seen "Steel Magnolias" too many times. However, I've come to realize I don't possess this steel and this is yet another disappointment unto myself. Forgive me, I am just ranting. This could also be known as "The Summer of my Disenchantment" and if I don't stop here I will wake up in the morning reincarnated as Tennessee Williams. God Forbid!

Comforting Cats

I am a relatively new cat owner and tend to wax effusive about the marvels of felines. We've shared our home with Finnegan, our Siamese cross, for over a year and a half. Neferteri has been an unending source of sweetness, amusement and delight in our lives for about eight months. Judging by the recent behavior of these two while our son's been gone from home, I am pretty sure that cats have an innate sense of what's going on in their humans' lives and act accordingly.

Finn is a fine cat, a regal cat...a "yes, I know I'm a handsome boy but keep your distance" kind of cat. Neferteri is more sociable, playful and affectionate. Since our boy's been gone, both have kept pretty close to us. Both have taken to sleeping on our bed and coming up to us in the early morning for pets, cuddles and love. Kitty kisses in the form of soft little licks are abundant and purring is audible. Neither of these cats are big in the purring department so when they do, it's a real treat. After all, isn't purring one of the main attractions of cats? I think so. Both seek us out during the day which is unusual as well.. They both know that something's afoot, I mean, apaw!

I don't know anything about cats' memories but I'm convinced our cats know someone's missing from the fold and the remaining humans are very unhappy about it. Neferteri is especially partial to our son and I see her look for him from time to time during the day. She plants herself in front of his closed bedroom door and if I've left it open a fraction from going in there to air out the place when a nice breeze is blowing, she'll push through into the room and stand in the middle of the carpet, looking all around for him. My son, the former self professed cat hater, adores Neferteri aka Little One, Little Miss Kitty and other equally obnoxious terms of adoration that only one who truly loves a kitty can understand. I wish I could bring Little One to him for a visit in the hospital. I know it would help to cheer him up no end. However, I know the hospital wouldn't go for it and neither would kitty. Being lured into a carrier and placed in the car means only one thing to our cats; a trip to the vet and so this option is out of the question.

I've wanted to share our cats in my journal for some time now. Somehow, some way I have broken through the barrier (and it's still hit and miss) that has prevented me from getting pictures into my entries so I'm feeling brave and ready to try it again.

Here are our beautiful cats:

Finnegan has the most beautiful blue eyes but they never come through in any picture I take of him. He always winds up looking possessed like a "devil cat". Just use your imagination and replace those blazing eyes with a gorgeous deep blue