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

Still Adrift in Hospital Hell

Since being transported from the hospital closer to our home on Friday, July 28th back to the hospital in San Francisco where his surgery was done, my son is still in the hospital. He has been in a room, hooked up to lines of saline solution, lipids and assorted liquids for 15 days! We spent last weekend with him as much as we could, once again using my dear brother's home as a home base to return to for late dinner and sleep. When it was apparent that he wasn't going to be released Sunday, we returned to our home late that evening and remained home the whole week so we could both return to work

Our contact with him has been a nightly phone call each evening. In the middle of the week on Wednesday, my husband had a short day at work and took himself down to the city for a personal visit, as much for his own good as our son's. Being in the position of utter helplessness has driven my dear husband nearly to the brink of insanity. He's a "take action" kind of guy and doesn't do well with "sit and wait" situations which is what this whole nightmare with our son has been.

Today is Saturday, August 5th. We got up early and traveled to San Francisco to check up on the situation and visit with our son. The last message we received from one of the doctors, one of the G.I. specialists actually, was that there is indeed a blockage leading into his small intestine that allows only a very small amount of liquid to pass through and nothing else. The jury is still out as to whether this is something to be fixed with a second surgery or perhaps it's a result of swelling in the area following the original surgery. Given time--an estimate of four to six months has been given--everything will return to normal. Let's see. Six months! Why, that brings us to January 2007 and if he goes that route, my child will not be able to eat one single bite of anything until then.

He now has something called a PICC Line inserted into his upper left arm. These initials stand for a Peripherally Inserted Central Catheter. This is a tube that is inserted into a vein in the upper arm and threaded along to a point near the heart. The placement of this thing takes about an hour and a half and an x-ray is taken to verify proper placement at which time the port on the outside of the arm is sutured into place. This is a larger catheter than the one he has in his arm above his right hand that has been used as a port in which all I.V. liquids have been given. The PICC Line can be used for blood draws (no more pricking needles) and he is now getting a bag of liquid in the evening which serves as a substitution for nourishment he's not getting from eating normally.

Over the past month, we have learned that everything seems to come to a screeching halt in Hospital Land once the weekend arrives. All the key players (doctors attending to your particular case and surgeons) seem to go off on some group sabbatical from Friday evening to Monday morning. It won't be until Monday, at the earliest, that we'll find out what the next step will be. All we want is something to happen, some action in a positive direction, be it to discharge him to home with this PICC Line over which a visiting home nurse will oversee for an indefinite amount of time or schedule another surgery to open up whatever it is that's blocked. We are all caught up in this medical web of frustration and it has turned out to be just about the most difficult occurrence my little family has had to deal with so far in our lifetime. We've had our times of grief, misery and sadness in the past but nothing has been as frustrating as this.

All I want is my child back home and well again. There is no joy in life these days; only worry, heartache, sadness and frustration. Believe me, it's not a diet for living I would recommend to anyone. I hope that the next time I post an entry there will be some positive news to share.

In happier times, a time that seems like ages ago, here is our son making a batch of chocolate chip cookies for the first time...and they turned out perfectly too!

Hospital Hell

An update following what I thought to be my son's healthy recovering from his laparscopic surgery. This did so not happen! This is an extremely long entry but I know my journal readership at this point is extremely low. This is more for a record for me and as anyone who likes to write knows, there is nothing like the catharsis of writing when one's head and heart are too full. All that stuff swirling around inside me has to go somewhere and so I have poured it out onto this page.

Tough love usually means taking a firm stand on your child's (or any loved one's) very bad behavioral problems and not giving in an inch until they are resolved or a major attempt at resolution is made. Many days ago I experienced another variation on this theme. The five to six days following my son's surgery were good. He seemed to be doing well, eating okay and feeling fine. As we approached the weekend his nausea/vomiting problem returned and, subsequently, the increasing inability to keep any food or liquid down. This was the weekend of July 15/16.

By Monday evening, we had a young man who couldn't even keep a 1/4 cup of water down. My husband and I had gone to work, hoping for the best that he'd come around and start feeling better. I called him on my lunch break and learned he'd eaten one piece of toast for breakfast and one small 4 oz. container of applesauce for lunch. By the time I got home around 5 PM he told me he managed to eat a small piece of a flour tortilla. Desperately trying to think of something that might appeal to him and that he could tolerate, I bought some nice Dryers Strawberry fruit bars. I gave him one. He ate it and not even ten minutes later, up it came. The result was not red as one would expect; it was dark yellow-bilious green nasty looking stuff. Since the onset of this entire nightmare, green vomit has been the red light to signify immediate action. A few quick phone calls later, we were in the car heading back to San Francisco to the Emergency Room of a different hospital from where we'd been before but an affiliate of the same group.

We got to the city in record time and worked through the inevitable ER waiting room maze in good time. This was about 10 PM. Before long, my son was lead to a guerney and the attending nurse proceeded to start him on fluids, intravenously of course. As the nurse was hanging up the plastic bag of solution, my son told her that it looked refreshing to him and since the poor guy was drooping like a wilted plant and extremely dehydrated, this didn't seem surprising. The decision was made to admit him and we followed him up to a room and proceeded to move ourselves in for the night. Fortunately, this room was set up for two beds but only had one in it. Our son was in line for more tests and since we weren't sure when these would take place we wanted to stick around. A very helpful nurse brought a futon, pillows, sheets and a blanket in for us to sleep (sleep??) on and there was a recliner to sprawl out on, albeit not a very comfy one.

The vomiting continued and then a nurse arrived with the worst news of all. Remember that ghastly nasogastric tube? One was going to be inserted once more to suck the crap out of his stomach. The sheer panic and horror on his face was heart-wrenching and just about did me in. This tube was the worst part of the entire first surgical experience and he was sedated when they put it in that time. That was not to be the case now. The nurse gave him some Ativan, a med for anxiety, and told him she'd return in about 20 minutes. Now my son is feeling wretched, nauseated, still retching and lying there like a sitting duck just waiting for the door to open again, knowing what's in store for him and filled with dread. My husband and I left the room when the nurse returned to insert the tube. There are definitely times when it's better to leave and let the medical staff do what must be done. We walked to the far end of the hall and could still hear the process going on. He gagged and retched through the entire procedure.

By the time we returned to the room, it must've been around midnight. We were exhausted, all three of us. My husband and I had been up since 5 AM since we'd both gone to work that day. My husband threw himself down on the futon and tried to get a little sleep. I think he fell asleep for a few hours. I was past the point of sleep and listened to my son throwing up all through the rest of the night. The N.G. tube was pumping out some very nasty looking stuff; it looked like what I always imagined the Le Brea Tar Pits to look like. He went on like this until almost noon the next day. I mentioned tough love. When he could muster enough strength to talk, mostly what my son said was, "get this tube out". "I can't stand it". "This is going to kill me"! I was practicing "tough love" each time I had to tell him his doctor was emphatic about keeping this thing in. Finally, thetime came somewhere close to midday the following day when a male nurse came in to tell my son he was there to remove the tube. My son looked up at him and said "I love you". It could've been anyone telling him this; male or female, beautiful or plain and he would have said the same thing. I know that he meant it with all his heart and soul.

The day progressed and the patient was feeling better by the moment. Gradually, a little solid food was brought in to try. It was a small bowl of mashed potatoes. Very plain, institutional mashed potatoes. I didn't see a trace of seasoning or margarine/butter mixed in and there probably wasn't any. My son ate this and seemed to tolerate it well. Time went by and it stayed down and he continued to feel better. The surgeon came in to talk to us and said he'd done all he could, there was no blockage in my son's system and perhaps we just had to give the procedure (and resultant shock to the intestinal system) time and all would be resolved. We were given a guide to follow for a bland diet; foods to encourage, foods to stay away from. This sounded encouraging and by around 5:30 PM, he was once more discharged and we headed back home. Back to an incredible heat wave that had northern California (and a great deal of the country) in a melting grip for a very long time. It was now Wednesday night and we were back home in the sweltering heat but we were home! Two days went by and all seemed well. We followed the diet and though he wasn't eating much at all, at least what he did consume stayed down. Saturday, July 22nd arrived. I had to go to work and my husband was home for the weekend as usual. Our son had been vomiting again during the night and several times upon waking in the morning. My husband telephoned me at work to tell me that he had been in touch with the local doctor and that he was taking our son to the ER at a hospital in the area. They got there around noon and I met up with them in the emergency room when I got off from work at 4 PM. After waiting for hours in the ER, once again the decision was made to admit our son and by 7:30 PM he was settled into a three-bed room, once more hooked up to a drip bag of water plus whatever flowing into an I.V. in his arm. Hmmm, three admits to a hospital in as many weeks this month.

Today is Wednesday, July 26th. He's still there. More tests, more observation. Fine when he's hooked up to bag-o-water and receiving anti-nausea meds. Begins to feel sick when he ventures to eat something as simple as a few grapes and a small container of jello. Now he's afraid to try to eat anything. He was scheduled to have an endoscopic procedure late this afternoon around 5 PM and we're awaiting the results. Basically, this test is a camera which will be put down his throat to take a good look around the inside of his stomach. Thankfully, blessfully he will be sedated for this test because guess what? That wonderful tube will be shoved down his nose and into his stomach one more time.

Friday, July 28th. Test has been completed; still no answers. Biopsy done of stomach lining; came out benign. Well, thank God for that! A possible theory has been tossed around that the lower section of his stomach does not contract the way it should to break down food sufficiently in order for it to get passed on down the intestinal line. If it can't go down, it's going to come back up. At present, my husband and I are sitting by the phone awaiting a call from the hospital to tell us that a bed is free and an ambulance is taking our son back down to San Francisco to the hospital where he had his laparascopic procedure. We'll be right back at square one. However, this time around he'll be seen by different people who specialize in gastrointestinal problems. Interesting to note: I'm sure the ambulance transporting the patient won't be rushing to the city at light speed with sirens wailing. Evidently one of "the rules" is that transfer from one acute hospital to another must be done via ambulance.

Nothing more to report at this time but I'll return when I have more information and time and opportunity to write.

A San Francisco Recollection

Over the years from time to time, I've remarked to my husband about how long it's been since we've spent any length of time in San Francisco. It's been almost 30 years since we lived there. Our visits over the past years have been limited to streamlining through the city en route to the airport and in more recent years, several visits to the zoo with my daughter's family.

Because the dictates of health insurance can be crazy at times, inconvenient and sometimes absurd we were directed to a hospital and surgeon in San Francisco to fix our son's woes. The first trek into the city was back on June 26th for a consultation with the surgeon who ultimately performed his operation in July. The appointment was 10:30 AM so we were at the tail end of the morning commute into the city and things were in full swing by the time we rolled into San Francisco around 9:15 AM. Cars, taxis, busses and pedestrians were out in full force. There were so many of them and they were all over the place. I had forgotten what driving in the city was like. Your eyes really have to be everywhere at once. I found it hard to believe that I used to drive around in this city. True, it took me a long time to gain enough confidence to even attempt it at first but I soon got in the groove.

My daughter is my San Francisco child and my son is local home grown from where we currently reside. Throughout his life, he's heard stories and reminiscent tales about our several years living in one of the most beautiful, interesting cities in the world. It really is! Since we were already in San Francisco, my husband got a bee in his bonnet to check out the old neighborhood and show our son the flat where we lived and how everything looked in general these days. This is exactly what we did once our appointment was over.

For those of you who know and read me, you know where and what type of neighborhood this was. For those who don't, check out this link:  http://journals.aol.com/springsnymph/AnotherCountryHeardFrom/entries/257 wherein I regale my public with some interesting facets of my life.

Up and over Divisidero we drove and down the hill to cross Market Street onto Castro. The Castro. A neighborhood unto itself! There was the glorious, regal Castro Theater in all its glory. It looked the same and one glance at the marquee assured me it was still showing those wonderful older films from yesteryear when movies were....well, better! But that's just this woman's opinion. The sidewalks were full of life and seemed more congested than I remembered. It was difficult to recall that for almost four years, my husband and I were among that throng. It was even harder to believe that I walked around this neighborhood pregnant and later, pushed a baby in a stroller or (more often than not) hauled her around in a Gerry Carrier frame on my back. But I did these things and they seemed to be part of another lifetime. This baby is now 28 and has her own little girl of six so indeed it was another lifetime.

There were a lot of changes. There seemed to be more stores and everything seemed to be shoved together more tightly than I remembered. We turned a corner onto 18th Street and headed for Diamond. Sweet Diamond Street. A quick left turn and several hundred yards later, there was the building housing four flats looking very much the same as when we moved. The little spindly trees in front had grown quite a bit, the color of the building was different but it looked the same. The Catholic Church was still next door and the school and large playground (where The Sisters of Divine Indulgence used to cheer on softball games between San Francisco's finest and the Gay Pride Union) were still across the street. When we moved in the late summer/ early fall of 1980 we were paying $350 a month rent for a San Francisco flat. This gave us three huge rooms, a long hallway (along which cloth diapers were hung to dry on a clothesline strung from one end to the other during the wet, cold months), one small room (the nursery, of course), one bathroom, a very small kitchen and back stairs leading down to a funky garage with parking privileges for one vehicle per flat.   A clothesline was strung out from the side of the porch to the corner of the garage, the kind on a circular loop where one hangs the laundry from one spot and feeds the line out. I wondered what the current renter is forking out now each month.  $1,500? $2,000?

We didn't stop, we didn't spend any more time than driving by slowly and saying, "there it is" but for me, this little side trip spoke volumes. I had many a happy time in this place but I was very happy to drive away and head for the Golden Gate Bridge in a northerly direction to my own little house in my own little town. The sheer force of traffic and humanity was overwhelming. I was very young when I lived in the city and it was my first and last experience in a large city. What a lucky woman I am. One city to have lived in thus far in my life of almost 53 years and that city was San Francisco. Sweet! It was so good to return home and I've had quite enough of the big city for some time to come. At heart I am the epitome of the country mouse and that's perfectly fine with me.