• Tag Archives hemophilia

  • Uh-oh

    Posted on by Charles Comment

    Summer                                        New (Grandchildren) Moon

    It’s 10 am.  Do you know where your grandkids are?  I do, they’re upstairs.

    Ruth has brought her sombre et sol disposition with her.  When sol, her blond hair dances and her smile, often mischievous, lights up the room.  When sombre, she turns her face away or covers it up with her ever present bunny and pretends no one else is there.  When she first wakes up, like her grandpop, it’s all sombre.  Later, the sun breaks out and she starts to play.

    Gabe opens cabinets and investigates those things stored just for him, that is, at his level.  One minute he’s playing sword-handler by juggling food processor blades–yikes–the next he’s taking the microwave popcorn out one bag at a time.  One bag at a time, that is, until he tumbles to the fact that he can get them all out by turning it upside down.  As he often says, Uh-oh.

    Gabe, as you may know, has hemophilia.  That means, among many other things, that Jon and Jen have to give him infusions of clotting factor three times a week through a port in his upper left chest.  It’s an elaborate protocol.  First the one who  will do the infusing has to sterilize their hands, then put on sterile gloves and prepare the infusions.  They come pre-measured but they still have to be drawn into a hypodermic plunger.

    After that’s done one of them, in this case Jen, holds him and the other, Jon, takes a small needle with a butterfly attachment and inserts it into the port.  Hopefully.  Jen said she went several weeks without missing the port, then a long stretch missing it the first time.  Gabe anticipates the poke and is unhappy, fidgety, but not out of control.

    Once the stick is in Jon first flushed the port with saline, the switched to the factor (clotting factor), pushed that out with another saline injection and follows, ironically with a fourth and last infusion of heparin, a blood thinner.  Counter intuitive, at least to me.  But, not if you understand.

    You’ve just put clotting factor in the port.  It will clot any blood in or around the port, creating a possible source of a clot breaking off and entering the bloodstream.  Not good.  So, the heparin resolves that problem.

    As I said at the beginning of this journey, Gabe couldn’t have gotten a better set of parents.  It’s not a drama, it’s not a why me, it’s a we need to do this so let’s get on with it.  That attitude will transfer to Gabe who will have to manage all this in the future.


    📂This entry was posted in Family Health 📎and tagged

  • Young Family

    Posted on by Charles Comment

    Winter                       Waxing Cold Moon

    Next to last day in Denver.  Last night Jon and Jen and I went to Fogo de Chao, a Brazilian steakhouse.

    They have two young kids, Gabe and Ruth.  Gabe got his hemophilia diagnosis not long after his birth a year and 8 months ago, so they have had to cope with it; never more so than in the middle of this year when he began experiencing spontaneous bleeds.  This meant a port and every other day infusions of clotting factor, given by Jon and Jen at home.  In addition, Jon’s shoulder, crushed in a skiing injury a few years ago, got worse and required shoulder replacement surgery.

    This is a pretty high stress level for a young family and they have handled it with real grace.  Tensions, of course.  But they have remained positive and forward looking, not giving in to despair or hopelessness.

    They have also raised Ruth into an exceptional three-year old, bright and funny and wise.  Gabe’s a happy boy and really beginning to move around now after a slow start.

    They needed some adult time and we got it.  I told them how much I respected the way they had handled all they’ve had in their lives this past year.  Worth every penny.


    📂This entry was posted in Family 📎and tagged

  • With the Grandkids

    Posted on by Charles Comment

    Winter                  New Moon (cold moon)

    Ruth hid under a blanket when I came in the door.  Gabe smiled.  Jon and Jen were busy making empanadas.

    While they cooked, Ruth and I played picnic.  Picnic involves Ruth bringing increasingly larger numbers of blankets, toys, books to a central area, then throwing a pillow or two in the pile.

    Ruth loved the purse her Minnesota Grandma made for her and Gabe seemed excited by his wall hanging of the planets.

    Jon and Jen got some good news about Gabe’s health.  A potential problem, an inhibitor to the clotting factor he takes by injection every other day, proved a lab error.

    Two young kids.  Lots of energy. Lots.  We’ve made plans for the stock show tomorrow, Sunday and Monday.  Chuck-e-Cheese on Wednesday.

    Lots of together time.  Good.


    📂This entry was posted in Family 📎and tagged

  • Jay, the Mohel

    Posted on by Charles Comment

    Quite an afternoon and early evening. 

    At 3:30 Gabe had his first post hospital infusion of factor 8, the clotting factor largely absent from his blood.  We drove a circuitous route through the new homes built on the site of the old Stapleton Airport. 

    We crossed out of that development into a poorer neighborhood, the one in which Jon and Jen both teach.  It is also the location of a former Army base now occupied by the university of Colorado.  It is also the site of  the old Army hospital plus several new buildings that now constitute the University hospital.

    In an old Army hospital building, with a wonderful Art Deco lobby, and old, undecorated halls and rooms is the hemophilia and thrombosis center.  In there the women who staff it made kind noises and praised Gabe’s beauty.

    We went back into a procedure room and there the nurse practitioner found a vein near Gabe’s left ear and slid in a needle attached to a line.  She first drew blood to retest his factor level (occasional misdiagnosis), then inserted the hypodermic containing the factor into the line and pushed it into his bloodstream.

    It works immediately and in fact aids in clotting the puncture created by the needle.

    Gabe whimpered, then went quiet.  In a minute Amy had a gauze patch over the puncture site and held it for about five minutes, just to be sure. 

    2 hours later, at Jon and Jen’s home, Rabbi and Jeweler, Jay performed a wonderful ritual.  Jay and I hit it off.  I held Gabe’s legs while Jay, the mohel, cut the foreskin in two practiced movements.  There’s more to this, but I’m in a  hotel lobby and I feel the need to move on.  Later.


    📂This entry was posted in Family 📎and tagged

  • There Are Days, Ordinary Days

    Posted on by Charles Comment

    58  bar rises 29.80 2mph W dewpoint 30 Beltane

    New Moon (Hare Moon)

    There are days, ordinary days, days you can recall, when your life took a sharp angle turn, or created a swooping curve, perhaps dipped underground or soared up, up into the sky.

    It seems I remember, though how could I really, the day I got polio.  I don’t know how this memory got shaped or if it got shaped in the way all  memory does, by our selective recollection of snippets of moments, but here it is.

    My mother and I were at the Madison County Fair, held every August on the grounds of Beulah Park.  Mom had wrapped me in a pink blanket and we wandered through the Midway.  There were bright lights strung in parabolic curves and the smell of cotton candy and hot dogs.  I looked out from the blanket, safe on my mother’s shoulder, held in her arms.  And I felt a chill run through me.

    Years later I was with my Dad, early in the morning.  We sat in those plastic cuplike chairs in a pale green room.  My mother came up in an elevator on her way to emergency surgery.  Surgeons would try to relieve pressure on her brain from the hemorrhage she had suffered a week before during a church supper.  I got in the elevator and rode up with her.  Her eyes looked away from me, but saw me anyway.  “Soaohn.” she said.  It was the last time she spoke to me.  I was 17.

    The evening of my first marriage I wandered down a path in Mounds Park where the ceremony had taken place.  I wore a blue ruffled shirt, music of the Rolling Stones carried through the moist July air.  Butterflies landed on my shoulder.

    The night the midnight plane arrived from Calcutta carrying a 4 pound, 4 ounce boy.

    The third week of our honeymoon, a northern journey begun in Rome, found us at our northernmost destination Inverness, Scotland.  We had rooms at the Station Hotel, right next to railroad terminal.  It was a cool foggy night and we took a long walk, following for much it the River Ness, which flows into Loch Ness.  We held hands and looked at this old Scots village, the capital of the Highlands.  A mist rose over a church graveyard on our right.

    And today.  Planting beets and carrots.  Kate taking a phone call.  The news from the lab about Gabe. Now, after this sunny spring day, life will go on, but its trajectory has changed, changed in a profound way, in a way none of us can yet know.


    📂This entry was posted in Faith and Spirituality Family Garden Memories 📎and tagged

  • A Sisyphean Task

    Posted on by Charles Comment

    68  bar steady 29.78 0mpn SSW dewpoint 22  Beltane

                            New Moon (Hare Moon)

    The day has passed as we both tried to get our arms around this notion of Gabe as hemophiliac.  As a dedicated user of the internet, I have looked up and printed out several different articles, brochures, information handouts.  Canada Health Services had some good stuff; so did the CDC; and, the World Hemophiliac Federation.  The amount of data, good data, available quickly astounds me every time I reach out for it.  I have not had a disappointing search, ever.

    The emotional problem is this:  lifelong.  This tiny guy, still in the hospital from birth at 35 weeks, now has a mountain to climb every day, every hour for the rest of his life.  This is a Sisyphean task because every time he rolls the ball up the mountain, it will come right back down.  There is no cure.  There is only amelioration.  After looking at the various treatments, I became even more convinced Gabe has the right Dad.  It will require fortitude to climb this mountain,  go to sleep, get up and climb it again.

    So, life will proceed.  We will all come to some terms with this and develop ways we can support Jon and Jen, Ruth and Gabe.  We all need to learn a lot more right now.

    Daffodils have begun to pop open everywhere, so yellow and white is a dominant accent to green here now.  Tulips should come into bloom any day now and the magnolia is out in all its snowy fineness.  Working in the garden, even for a bit, literally grounds me, draws anxiety out and replaces it with the strength of life’s eternal cycle.


    📂This entry was posted in Faith and Spirituality Family 📎and tagged