So Far, It is Working

    For about a full week already we have a gate to the kitchen. Not a "keep-the-toddler-out-from-under-my-feet" gate, but a "let's help-Ricki-live" gate. Ricki's continued weight gain has reached terrifying proportions, despite all of our attempt to cajole, threaten, plead, and teach.We have tried dietitians, adjusting her medicines… all to no avail. So we finally realized that we had no choice but to lock the kitchen and refrigerator off bounds. Which we have done.

   We thought that Ricki would throw tantrums, but she didn't. It is almost as if she is relieved. SHE WANTS to be healthy, but she doesn't manage to fight her evil inclination, as is true with many of us.

A Summer Walk- The Yarkon River

    This post is to acquaint readers (especially those in Israel) with the lovely walk available 

in the Yarkon Park in Tel Aviv

   

We are starting out in the parking lot of the Ayalon Mall, and circle around the Ramat Gan Stadium. In back of the stadium is a bridge which crosses the Yarkon River. Most of our walking will be on the second side. The bridge is new, and next to it is a memorial plaque dedicated to the 4 athletes who lost their lives when the temporary bridge that had been there collapsed, 15 years ago.

   Interesting is that three of these athletes died not from the fall, but from the toxins they imbibed from the polluted water. In the aftermath of this accident, concern about the environment (which had just been starting), got a big boost. Efforts to clean up the polluted river were strengthened. Not only was the river improved, the park surrounding the Yarkon has been filled with walking/cycling paths.

Picture: Shadows on the bridge. Note on the other side (partially seen), a mother running with her child's pram in front, and a cyclist…                                  

   After crossing the bridge, we walk about 5 minutes in a fairly sunny area, then we enter a wooded area. The Yarkon river is to our left (the next  picture I took looking back)

   It is about a nice half-hour walk (mostly in wooded areas) from the bridge in back of the stadium, (along the banks of the Yarkon),to the artificial lake in the park's main area. (This is Ricki at the lake, two years ago)

As we leave the lake we will go on a tangent , crossing a bridge over the Yarkon to reach the historical "Seven Mills" site.

   The "seven mills" where flour mills which operated during the Ottoman 

empire period.

Grinding stone:

Exit arches for water from the mills :

   After leaving the "seven mills" and the lake, we turn in the direction of the ocean, walking alongside the Yarkon river, which is to our left. We are walking along one of the many special walking/bike paths which circuit and cross the park in almost every way imaginable.

The Yarkon park, besides being a bicyclist's haven, has places where 

one can rent boats. 

   After the open stretch we go under another street bridge, cross another, albeit shorter, stretch, and we reach THIS pedestrian bridge crossing a side shoot off the river..

 [I don't know how all these young people are able to whoosh across this thing so effortlessly on their bikes. I sure couldn't…..]   

From the top of the pedestrian bridge, we can see the smokestack of the Reading Power plant. We are only a few minutes walk from the ocean. We soon reach a long pedestrian bridge which spans the outlet of the Yarkon river to the Mediterranean.

Note the three disabled cyclists crossing the bridge in low special hand operated"bikes".

   From this point if we choose, we can 

look south towards Tel Aviv (and Jaffa beyond), but if we continue our walk just a bit, we can see the bike path stretching 

ahead of us towards the north.

    (This bike path is part of the Israel National Trail (see : HERE  

 To the south we can see the Tel-Aviv - -Jaffa port     

Hospital Tales #8 – a New IQ Test?

     As I wrote yesterday, Ricki needed a PET-CT scan when in the hospital, which in Ricki's case seemed easier said than done. When they told me that she would have to lie still for three-quarters of an hour BEFORE the test (in addition to the 25 minutes or so of the scan), I had grave doubts… 

      Eventually it worked out because Ricki's doctor came specially to give her some IV Valium, which put her to sleep for the first 45 minutes, and left her drowsy for the rest. In addition, Ricki was motivated to lie still, having been informed by her doctor that if she "behaved and lied still" to the PET, he would buy her an ice cream cone. In addition the lady in the bed next to us promised her a "prize", and her daughter chipped in "I'll give you some chocolate".

   Ricki kept reminding me that she had been promised an ice cream, but she didn't really repeat all the rest…. Until post-test. On return to the room she requested her prize. And the NEXT day when the lady's daughter arrived, Ricki announced "I laid still!" The woman pulled out a piece of gum from her purse. But Ricki remembered quite clearly that the promised "goods" had been chocolate and demanded her due.

Now WHERE is that memory in everything else?!?!?!

 I think I have discovered a new way to check the true intelligence of children……

Hospital Tales #7 – The PET-CT

   During Ricki's hospitalization, I often took her in a wheelchair (oxygen included) around various hospital corridors. We were familiar with most:

Imaging area - from her repeated x-rays, ultrasounds, and even 2 CT's

Intensive Care Unit- from when she was there

Surgery suite  - from her heart surgery at 3 months of age

Cardiac area – from the clinic before her heart surgery, as well as the heart scans she has done repeatedly

Clinics area- from the psychiatric clinic

   Just about the only area  on the ground level of the building which we had successfully avoided was the cancer patient's area. Which was fine with us.

[image: PET scanner]

   Then the doctor informed me that there had been a few "questionable-looking" nodes on her second lung CT, and he wanted to do a PET-CT full body scan in order to rule out any problems with the nodes. I agreed, and was pretty calm. There was no reason to believe that she had the big "C"; it was just a precautionary test. (And in the end, thank- G-d, the test came back clean….).  "Well", I thought, as the orderly wheeled Ricki into the special PET scan area, next door to the cancer area, "I guess we're 'meeting' this area as well." But I was still pretty calm. I did wonder what percentage of the people waiting there had cancer…. But hopefully all would be OK for Ricki.

    THEN I saw the sign on the wall. Pictured was a young, vivacious-looking woman. Next to the picture was the text:

     "This area is dedicated to the memory of so-and-so, mother, wife, and a great person."

    THAT’S when I stopped being so d____  laid-back.

    They are checking Ricki for CANCER.

     CANCER which kills the young.

I am grateful that Ricki's test was clean. I can only pray that the others there also had clear results.

The Evening Bowl of Soup

    By me it's a ritual: supper is nearly always a big bowl of soup (usually low-calorie vegetable), and two slices of bread. Whether the weather is a windy winter, or sweltering summer, I like soup.  But this week I had cooked a thicker, pea soup, in deference to family preferences. And not having walked much that day, I had no extra calories to spare. But I had enough for supper. HOWEVER, there were also left-overs in the fridge. Not fattening stuff, which I would have no qualms of chucking if no one else ate it, but some freshly cut vegetables and a piece of grilled fish. And no one else was going to eat it. I could eat one or the other; not both. And I didn't want to go out and walk an extra hour, because :

1)     I am getting too used to 1700 calories daily (which is OK on days that I walk a LOT ) as opposed to my regular 1500 calorie fare. This habit is a potential time bomb).

2)     I am trying to get more sleep, and leaving the house at eleven PM for a ninety minute walk is not compatible with this goal.

   So I chose to eat the leftovers, figuring that I need to sometimes break the idea that I "must" have soup, as well as keep to 1500 calories. I had a nice amount of satisfaction that I managed this and was able to control myself.

   However, the following day a relative suddenly arrived to do some home improvements in my kitchen, and without warning the kitchen was inaccessible until midnight. A second evening without soup was too much. The store-bought pizza we ordered was good, but no replacement for a warm bowl of soup. I ended up overeating, much to my chagrin.

    "OK. That happens. Just don't do it again…."

Hospital "Snippets"

1)      During my time in the hospital with Ricki it became clear that the therapeutic dosage of my morning coffee is two cups…..

2)     One of the older patients decided within 5 minutes of meeting us that Ricki is "spoiled" . Gee, thanks.  G-d, please never let me get so judgmental.

3)     Special thanks to the nurse who saw me walking the halls late one night, trying to get my 10,000 minimumdaily steps in.

    "Why don't you walk outside?"

"I'm afraid Ricki might wake up…"

"So she'll call 'Mommy Mommy' . Go ahead; be back in half an hour…."

Hospital Tales #6- The Armchair

   As I mentioned a few days ago (in Tales #2),the first few days of Ricki's recent hospitalization, we were in the "mini ICU" of the medical ward, a large room with one nurse basically always there. We've been there before during previous hospitalizations, and there is an advantage, as this room has decent fold-down –to-a-bed-chairs for one family member per patient. The disadvantage is that often this room is noisier at night, as many of the patients there really need round-the-clock care.   However, on Wednesday we were transferred to a regular room. There are in these rooms mostly regular armchairs, and occasionally a fold-down type. Rarely even an armchair is not to be had. (One night I saw the wife of one of the patients sleeping on a blanket on the floor.)

   But as luck would have it, we have a relative who works part time at the hospital, and she was working Wednesday night. So she graciously offered to scrounge up a spare fold-to-a-bed-chair from HER ward for the evening. I was grateful, but since she was not working the next evening I was loathe to take responsibility for the bed for the entire weekend, worried that someone would swipe it from me, and I would end up having to recompense her for it. I figured that when reading Friday nights I often fall asleep in the living room armchair (which DOESN'T fold down to a bed), so how bad could it be to sleep in one at the hospital?

   [An aside: Often family members switch off (one at day, one at night, or different people each night), so one night with less-than-optional sleep is not too bad.This is I feel, the recommended way to do things/  But as someone who was there basically 24/7 (I was gone about 4 hours every two days to dash home and change clothing, etc.), my situation was different, especially as Ricki was quite difficult to deal with in the hospital. The staff knew this, and should have, I feel, given me a priority on decent sleeping arrangements.

    However, as Thursday evening came around, the ward was pretty full, and there were not even NON-folding armchairs to be had… only kitchen-type chairs. Finally at 1:00 AM after tossing and turning for two hours, I went out to the nurse's station, and told the nurse "Sorry, but without a minimum of 4 hours of sleep, I can't deal with Ricki tomorrow. I took her recently to the bathroom, she's sleeping. And I am going home. I will be back at 6 AM…." I exited quickly, took a taxi home, and one back in the morning.

   On my return I discovered to my chagrin, that Ricki had awakened, and had badgered the nurses all night about my whereabouts. My regret is that this disturbed the family member of the patient next to me.

   However, within 5 minutes of my return there was an armchair in my room.

Note: If a hospital can hire fewer nurse's aides because family members help with bathing, toileting, and feeding their family member, they should have a fold-down chairs for their family member who stays there. ESPECIALLY if it is a case where one person is the constant assistant (as I was).

Using My Head Instead of My Heart- Hospital Tales #5

    Three of Ricki's last five weeks have been spent in the hospital. And she used her situation there to her advantage. She craved attention, and she got it. Most of the time she kept me hopping with her requests (for food, drink, and entertainment), (For example, she would ask me to check every 5 minutes if "lunch was coming". If I refused, SHE went to check, which meant that she would be without oxygen.) Additional be-a-pest tactics included  refusal to wear oxygen, and other acting up. I guess she learned early on that Mommy did not appreciate her prancing half-unclad in the hall, wetting her bed, or other let's-get-Mommy-riled-up activities. In the hospital, it is easier for her to get away with these type of shenanigans, because if ignored her, she would bother the nurses, or other patients. 

    On our return home she continued to garner attention with negative behavior. After a few days,I tried sitting down with her and explaining that she has three options:

1)     To not wear her oxygen, get sicker again, and return to the hospital ("which includes blood tests", I reminded her…).

2)     2) To be a pest at home, acting out. Then mommy won't have the time to do fun activities with you, you will get punished, etc.

3)     The third choice is to be a darling wonderful kid that listens to Mommy……

"So what do you prefer?"

"The hospital!"

Yeah. I KNEW it…….

Explanations that Mommy does NOT want the hospital disappointed her.

    Anyway, the following day was a disaster. She tried innumerable tactics to keep me at her beck and call, and succeeded pretty well. She was pretty horrendous, and received PLENTY of negative attention. At day's end I realized that if this situation was going to improve, I would need to change the game rules. I would need to avoid giving negative attention, for even the most provocative behavior (like sitting absolutely stark naked in the living room….*), and simultaneously do two things:

1)     Lay down clear obtainable consequences for any bad behavior that continued.

2)     Be sure that when she WAS behaving to keep her occupied with various activities.

Ie, I simply needed to use my head, not my emotions, to persevere. Because although she weighs more than me, I am smarter (at least today I am…..).

*(I DID close the window slats so that the neighbors wouldn't be able to view her…)

Mountain Climbers (Hospital Tales #4)(And After the Climb)

[image: Longs Peak seen from Twin Sisters Peak]

 While in the hospital I came across the following in the book Mountain Climbers by Malky Feig. (This is NOT a book on the Rockies, but a well-written book by an orthodox Jewish writer, recording stories of people who have had special challenges in their lives.):

"Up there, where the mountain gets steep, there is something clear and invigorating about the air. There is something quiet and elevated that one doesn't always get to hear in the din below.
   And that something is the whispered connection between oneself and one's purpose, between oneself and one's Creator."

    This analogy rang very true for me when I was in the hospital with Ricki. You see, I KNOW the mountains. I have been* to the top of Longs Peak (altitude 14,259 feet  or 4,346 meters), the highest peak in Rocky Mountain National Park, from where one can see out of Colorado state. Last summer I climbed a much lower Peak, the Western side of "Twin Sisters" (altitude  11,413 feet or 3,479 m). And the view even from there was tremendous. You can see the hustle and bustle of the traffic on roads below, but the sound from below has dissipated, and you only hear up there the pure sound of wind--- and perhaps the noise from a ground squirrel or a marmot. [And you should get a friendly "How're doing?" from other hikers on the path, fellow humans who understand your attraction to these high slopes, while much of the remainder of the population would rather spent their "day off" in front of a computer.]

   Indeed, the experiences I wondered at in awe as a child had a definite effect on my soul, being a major contributing factor in my realization that there is a G-d.

   And, too, I am familiar with that feeling of being a bit detached from normal existence whenever Ricki has been seriously ill. And one comes to see life differently.

   But now I am home, craving a bit of normalcy, but I am struggling to reach that. Ricki, being ill and in discomfort has become terribly dependent on me, and eager to get attention (even if it be negative) from the crack of dawn until about 9 PM. Somehow, here in the house, surrounded by the tasks of everyday living, the concepts of life's challenges bring me closer to my creator are a bit harder for me to become enthused about.

*not recently, but as a kid….  

                                                      [image: The view from Twin Sisters' slopes....]

The Arab Cleaning Lady (Hospital Tales #3)

    One of the worst of the "trials and tribulations" of accompanying a relative and caring for them in the hospital, is the need for your family member (and you) to avail oneself of the "facilities". As in most public places, these tend to be… AHEM…not in very pristine condition. (Often those located in out-of-the-way areas of the hospital are in better shape, but if you are caring for your relative, you often can't go too far afield.)

An aside:

   It so happens that the hospital where Ricki was treated at has a large amount of integration: Arabs and Jews work side by side. Many of the doctors, and several of the nurses are Arab, and the staff  relations seem to be good. However, the cleaning staff is virtually (as far as I could see), non-Jewish.

   When I first entered the bathroom near Ricki's hospital room, I was full of qualms, even though it looked rather decent. So using paper towels and hand disinfectant, I cleaned the seat for Ricki. But as the day wore on, the room got worse and worse. The seat I could clean, but at one point the floor became so full of dirt that we went to another room, which was slightly better.

   The next morning a slim lovely-looking young Arab lady, about my married daughter's age, arrived. After she cleaned the toilet, I voiced my thanks, adding that I understand that her job is not easy or pleasant. She seemed to appreciate this, and every morning on her arrival I would greet her with a smile. She, in turn, allowed me to stay in the room with Ricki when she mopped, and she always gave Ricki a big smile.

   So I was patting myself on the back for following Rabbi Miller's advice to always thank workers for what they do. I figured that I had maybe even made a miniscule impact in Jewish and Arab relations in Israel.

   That is, until about five days later, when this young lady mentioned that she has a cousin with Down syndrome. It was simply Ricki who had taken her heart.

Hospital Tales, #2 (Moral included)

    The first few days of Ricki's recent hospitalization, we were in the "mini ICU" of the ward, a large room with one nurse basically always there. We've been there before during previous hospitalizations, and there is an advantage, as this room has decent fold-down –to-a-bed-chairs for one family member per patient. (I'll write more on sleeping facilities in a future post, G-d willing…). But after a few days, we were moved to a different room, and luckily we got the bed nearest the window. While the view (of the hospital imaging area's rooftop) was not that great, the sunlight (as opposed to artificial light ) was a definite improvement. Ricki noted the pigeon on the ledge outside, and being in a rather contrary mood, decided that she didn't like it there. She tried to shoo him away, but he was really not that concerned about the frustrated teen on the other side of the glass wall, and he continued to amble along the boardwalk (window ledge). Eventually he ambled out of sight and Ricki, content that her authority had been upheld, heaved a sigh of relief, and turned her back to the glass. What she didn't notice was that three seconds later, he had returned, with two more of his fellow pigeons tagging along behind him….

   *   *    *    *

   As I recorded this, initially just attempting to share a cute story, it suddenly hit me: Ricki wanted to be in control, and she was happy when she THOUGHT she was. But she wasn't.

    And we adults, so often confident that we are managing our lives, our finances, our health… when we really may not be aware of the "pigeons" about to walk by our window, which we may be unaware of… or only too aware of.

   Then suddenly, an event like (to take an extreme example) the Colorado shooting happens. I mean, my G-d, who kills kids in a movie theater? In Colorado? (BTW, in Israel everyone gets CHECKED before entering a theatre. I suspect the world will just have to get used to the inconvenience of security as the number of terrorists and off-the-wall "crazies" increases…). But even on a smaller scale… we can be dieting, exercising and doing everything right and STILL get ill. (Of course that doesn't mean that we don't need to make an effort to watch our health.).  The list of ways our lives could be turned upside down is depressingly long. Deep down we need to be grateful to G-d for every good day, for a day of health, no hospitals, no bad news. Because, when our backs are turned, ultimately we are not really ruling our world…..

Living Normally (As Much as Possible)

   Anyone who has had a seriously ill child knows the scenario:  You can be living your "normal" life when suddenly you realize that your child needs to see the doctor RIGHT AWAY, or you need to head out to the emergency room.

   On a moment's notice any other plans and/or obligations you have are dropped or postponed.  If you have a few moments you might grab your calendar to see what things are getting chopped out of your life, what you need to reschedule, who you need to notify that you are not showing up…..

   [Real "fun" is when a specialist's appointment you have been waiting for ten weeks already gets knocked out like this…..Last week Ricki missed a lung specialist appointment we had scheduled over two months ago, because she was in the hospital.]

    And when you do finally come home, there is usually a big backlog of things that you need to do:

-        Scheduling follow-up care

-        Getting equipment/services you need

-        Trying to make your house look like a home, and not a disaster area…..(Does anyone out there have families that REALLY keep their home clean and neat in their absence????)

-        Catching up on all sorts of things that you normally do- shopping, mending, folding laundry, etc.

   In addition, the strain and stress one feels during the time of an emergency often gets pushed down and ignored, as one struggles to meet the challenges demanded of the parent. On arrival home, when one has time to think, the enormity of what one has experienced can occupy your thoughts, and built-up lack of sleep takes its toll as well……

But here's the catch: It is so easy, when there is a backlog of tasks to do to try and do it all…

   Don't fall for that trap. Get your sleep. And while some tasks need to be tackled right away, if something is not threatening a family member's health, or the basic well-being of your family, give YOURSELF some free time. Do some "normal" living.

    As an example:

    Ricki was discharged on Thursday evening. On my return home I postponed unpacking, and instead threw a load or two of laundry into the wash, made myself some NORMAL food, and cleaned a bit in the kitchen. The next morning I started the day with a brisk walk that "I don't have time for", calculating that I could unpack after shabbas (the Sabbath) if necessary. The rest of the morning I spent arranging medical matters. Sunday I spent most of the day running errands, mostly related to medical matters, but I took a few minutes to pick up the class notes of a computer lesson I had missed two weeks previously (the day Ricki was hospitalized).

  By Monday morning the real "important" things had largely been done, so I went to my ceramics class, although I left it early to attend to a matter at the health fund before it closed. Then in the evening, we did some drilling work, which left the house dusty, and an hour and a half before my swimming class I noted that Ricki's leg was MORE swollen. I quickly darted with her over to the doctor (who is luckily just a few steps from our house), I came home and wiped the kitchen down a bit (from the dust, so people could eat….), gave Ricki her clexan injection, and ran out the door to go swimming. I arrived a bit late (thus getting in only 45 minutes rather than an hour), but I went. I opt to keep my life as normal as I can……

   And by the way, that is why the blogging of "Hospital Tales" will take a while. Real life needs to comebefore the virtual one, as much as I would LIKE to "do it all"......

Hospital Tales, Number 1

    Due to her excess weight, drawing blood from Ricki is PRETTY difficult. One doctor was able to draw from a vein under an artery ( vein unseen…), another was good at drawing from her femoral vein. But that was it. It is so difficult to draw blood that she has been sent home with a year's prescription of anti-coagulant injections (Clexan), rather than the stronger Coumadin pills, because Coumadin requires blood tests to be done weekly…..

   But Ricki really knows the techniques pretty well… tie a rubber glove "tourniquet" to make the veins prominent, pat the area to add to the visibility of the vein, and then draw the sample…and while in the hospital, she often played doctor to a stuffed toy I had bought her.

    On our return home, she demonstrated for her father….

 (although she "injects"… I guess mixing up the two procedures…..) [at 0:27 she even lifts up the syringe as the nurses do to check the dosage.....]

Back Home!

   As of late Thursday afternoon, Ricki and I are home!  (Although she IS on OXYGEN!)   Thank G-d her PET scan came out clean....


 I have about 7 posts planned, BUT I need my sleep tonight even more.... so soon.....

AGAIN! (In the Hospital!)

   "Ricki" was in the hospital (second time since Passover) on the 17th to 22nd of June. She had, as the previous time, "some type" of lung disturbance", although we managed to get her in fast enough to keep her pout of ICU. They treated all possibilities, and with in a few days  her Oxygen saturation levels improved. They even did a CT of the lung (regular), heart echo, and lung function test, but the first 2   were normal, and the last was hard to get a good test done. In the end, the doctors decided that this was all caused by stress on the heart from not wearing her CPAP at night, causing fluids in the lungs. During her stay she complained of leg pain, so they did a Doppler test of her leg, but it was OK as well. So we went home, fought her for a week (and she wore the CPAP at least half of every night)... and by Sunday July 1st she was cyanotic again... entering the hospital again July 1 with an O2 sat of 60! (There went her "camp" and my mini vacation... I didn't mind so much and she was too sick to care, poor thing....)

   Again, tests showed nothing conclusive, but on Monday her leg  (which as always with her lung problems tend to have fluids) was purplish which I showed the doctors. A repeat was done of the Doopler, and she has a thrombosis. They started  milder anticoagulants right away, to prevent pulmonary embolism.

   So again they treated all possibilities, but she has NOT been getting better. A repeat Echo heart was done with the "expert" echo technician checking it, and again the results were normal. Yesterday they redid a lung CT, but with dye in the blood, and she has a PULMONARY EMBOLISM! In addition, she has a few "suspect" nodes that they want to recheck with iodine CT, and biopsy if needed. As soon as they are sure that the nodes are not cancerous, they will start Coumadin for the embolism.

   Of course, the hospital has generated several good potential blog posts, but you'll all have to wait till I have more time. I have to get back to the hospital (came home for three hours...)

NOT Waiting for the Bus

   I had a busy day ahead of me one day last week, one in which including swimming in the evening. (And I need to walk about 5000 steps to go and come back from the pool). So getting my 10,000 daily steps did not appear to be a potential problem. So as I left city hall (having attended to a needed task), I decided to take a bus to the mall where I needed to buy something. At this point, saving time was more precious than gaining steps. But as I reached the bus stop, I saw a bus of the line I needed pulling away. And a quick glance at the timetable posted on the bus shelter informed me that the frequency of this line at that hour was about 20 minutes.

    "HMMM " I pondered, "twenty minutes plus ten that the bus needs to reach the mall equals a half hour. In 35 minutes I can reach the mall on foot…."

   So I walked it.

   Being thin(ner) gives one an entire different mindset. At 150 kilos I would NEVER have entertained the idea of walking instead of waiting for the bus…………