The tapestry of the life of a medically complex family

Archive for December, 2010

Goodbye 2010

The closing of another year

bring no remorse & shed no tear

A hard year for some friends we’ve lost

in our hearts their lives embossed

A good year for the friends we’ve made;

for out of hospitals we’ve stayed

A high school grad resides with here

relaxing on his own “gap year”

Two four year olds, improving health,

learning, growth, affection wealth

The three year old makes gains as well

thriving, smiling, Momma’s  belle

In our hearts some pain and joy,

to our future: come peace buoy

As 2010 it’s hold release

Wish you joy, health, love & peace!

Wishing a safe, healthy and happy 2011 for you and your family!

OUR 12 days of Christmas

On the first day of Christmas the Universe gave to me

A respiratory virus for three.

On the second day of Christmas the Universe gave to me

2 trachees sneezing

And a respiratory virus for three.

On the third day of Christmas the Universe gave to me

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the fourth day of Christmas the Universe gave to me

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the fifth day of Christmas the Universe gave to me

5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the sixth day of Christmas the Universe gave to me

6 dirty neb kits                 (before breakfast)

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the seventh day of Christmas the Universe gave to me

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the eighth day of Christmas the Universe gave to me

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the ninth day of Christmas the Universe gave to me

9 rounds Chest PT

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the tenth day of Christmas the Universe gave to me

10 unreturned phone calls   (yes, all to doctors)

9 rounds Chest PT

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the eleventh day of Christmas the Universe gave to me

11 missing supplies

10 unreturned phone calls

9 rounds Chest PT

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the twelfth day of Christmas the Universe gave to me

12 hours oxygen

11 missing supplies

10 unreturned phone calls

9 rounds Chest PT

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

BUT: at least we’re still at home!

the "divorce"

No. You are correct I have never been married. And this post has nothing whatever to do with a reciprocal adult relationship- I know you’re relieved! This post has to do with questions about my kids with special needs, with medical needs, with – well, QUESTIONABLE characteristics or behaviors. This post has to do with the attachment I get to seeking an answer to the question- and the way it feels to learn that this testing holds no answer.

My youngest underwent an MRI yesterday and had an ECHO (of her heart) done as well. My youngest has central apnea:  http://www.nlm.nih.gov/medlineplus/ency/article/003997.htm Central apnea has been noted in each of her 4 sleep studies and recently it was determined that the strategy being used (CPAP- “Continuous Positive Airway Pressure”  http://www.nhlbi.nih.gov/health/dci/Diseases/cpap/cpap_what.html ) was not improving the quality of her sleep. Her new pulmonologist believes (as I do) that Central Apnea in a child older than 3,preemie or not, is something that should be addressed. He wants to choose the right treatment for what has been observed and so he wants to know if there is a clear root cause for the issue. He also wants to be sure we don’t wait on using an effective treatment if there is any indication her heart is deteriorating. But, he would also not want to use a trach and ventilator if the problem could be addressed in another way as long as there is no heart involvement.

The other parts of the MRI were being done to test for brain abnormalities that could indicate Cerebral Palsy or mitochondrial disease processes, and to see if her cluster of symptoms could be explained by a tethered spinal cord. The CP diagnosis would mean little in the “big picture” but would explain her physical asymmetry and weak tone. The tethered cord would be reparable with spinal cord surgery, 7-14 inpatient days & some recovery time at home.

So, for the last two months, since these ideas came up as possibilities, the referrals were made, the courtship had begun. By a month into the courtship, I was married to the ideas that: if there’s tethered cord, we can fix it; if there’s heart damage, we move forward on the straightforward plan to trach & vent; if there’s CP, she’s doing great and we keep working on the asymmetry. Do testing. Get answers. Move on. Marriage.

But the testing showed nothing, provided no definitive yeses. I fought it at first. I blamed. I begged forgiveness. Then I sucked it up, divorced the idea of finding reasons, divorced the idea of having guidance for what to do. Divorce is final. What is it I do next? Online dating?

 

 

 

I am the "broken toy"

You might wonder what the heck I mean by my title… well, let me tell you about the Christmases of my childhood. Each Christmas, five kids would receive gifts under the tree and in stockings. If my parents bought different things for each of us, the item chosen for me would inevitably be the one with a piece missing- e.g., the DOLL from a “doll & cradle” set. Place markers or dice would be missing from games, I would get the “irregular” pair of footie pajamas with one arm that was significantly tighter than the other- and, NO, I was not grossly asymmetrical! On occasions when my parents would buy all of us the same item for Christmas, say cross country skis, my bindings were set for a pair of boots 3 sizes smaller than my feet. The year we got 3-speed bikes, my sisters rode theirs Christmas day while I was sick with the “stomach flu”- AGAIN! That was the winter of 1977-78, remember? The blizzard of ’77-’78 started dumping 1 foot of snow after another on us late in the evening of Christmas Day. My parents discovered in the spring that there was a piece missing to my bike’s derailer… My Mom worked so hard to try to change the karma of my gifts; she would wrap and tag, then on Christmas Eve, SWITCH tags to try to trick the karma police- inevitably her switch would find the “broken toy”.

So, this year, it is not surprising to find the “broken toy” moniker still fits. This year, when Santa ordered my Christmas present- seriously, he DOES, I have been GOOD- he struggled a great deal in trying to find the perfect item that I would love and appreciate. When he finally found “IT”, he had difficulty getting the forms on the website to work- it would only let him order it with ONE attachment with no personalization, then would allow multiple attachments but only ONE personalization- but who needs multiple things like that all labeled with EXACTLY the same name and birthdate? When the online ordering was finally corrected, Santa checked it twice- as he always does- then clicked “Complete order.” Not surprisingly, this first attempt was met with a failure of the internet at just about the submission point, so the entire order was lost in the ne’er world. 50th time was a charm and the item was finally ordered and the e-mail confirmation included exactly the right information in the right way.

Flash forward from that e-mail to the much anticipated arrival of the Santa gift today. The item came in the company’s signature red box with cream colored ribbon- as did the item Santa ordered for my older sister since he knew I had drawn her name in the “swap”. In order to determine which item would get the enclosed gift card addressed to her, a box had to be opened to determine which one held her gift and which one held the lavish and beautiful item that Santa felt I so richly deserve this year… There was a weight difference so the guess was correct on the first try and her gift was intact and BEAUTIFUL, tucked safely back in the wrapping for her to open on Christmas day during the forced family fun extravaganza that is planned. ANYWAY, after identifying the correct item for the gift tag, I reviewed the invoice for both items and noticed a slight error in the description of the gift Santa got for me. Well, knowing what I know about my karma and the likelihood that the error was, in fact, the way the company produced the item they delivered to my home, I had to review the contents of the other box to be sure that they had in fact sent the “broken toy” gift for me.

Upon reviewing the birthstone pendants and their personalization, sure enough, one of the twins’ name and birthdate was on the August pendant and my youngest’s name and birthdate was on one of the March pendants. Now, it’s possible that the names could get switched across items given the engraver’s lack of knowledge of my kids names associated to their birthdate… but wouldn’t you think it might feel “wrong” to an engraver to write “8-2-07″ on an aquamarine pendant and then write “3-2-06″ on a peridot one? Okay, I understand, you may not know that aquamarine is the birthstone for March and peridot is the birthstone for August, but wouldn’t you think that the guy who runs the engraver for Red Envelope might know? Especially after he had just completed another aquamarine pendant with the same birthdate on it as another of the pendants? I’m just sayin’… there may have been multiple clues that the wrong birthdate was being engraved and, perhaps the original order could have been consulted…? Nope. So now I have this beautiful mother’s pendant necklace, with 2 incorrectly engraved pendants- out of 4.

The good news in all of this is that Santa called Red Envelope immediately to notify them of the mistake. He spoke with them about how important it was for the engraving to be correct and on the correct birthstone pendant. He also told them that I had been so amazingly good this year that it would be a true disappointment if I had no gift from him under the tree on Christmas day… Well, wouldn’t you know, Red Envelope has just about the most amazing customer service department when it comes to errors made on their end. They told Santa that he was to keep that necklace and ALL of the pendants and that, since it was more than $75.00, they would replace the entire necklace and pendant set- crafting 4 new pendants and sending another silver chain to hang them on. Two necklaces for the price of one, sure the kid’s names are wrongly aligned, but you only see the engraving on the side of the pendant when you examine it closely. Could be the Nana is going to get a mighty nice 70th birthday gift this March… maybe I could get a jeweler to transfer the stones onto the correct pendant.

Yay, broken toy!

Tweeting

For the last 16.5 hours, I have been tweeting all medical & ADL care activities I have done for my 3 medically fragile preschoolers. While I combine activities like: “Saline #3 post Chest PT#2 for trachboy. Trachgirl is lucky winner of albuterol neb for belly breathing and upper right wheeze. Fun goes on.” , I have still tweeted 54 times, including 6 overnight.  No wonder I am tired after a full weekend without nursing each week.

Rumson

This morning, during that time of morning when you are nearly awake but not quite, I dreamt of visiting my grandparents’ home in New Jersey. When I realized where I was, I was standing in front of the bungalow with my kids in a wagon behind me. An older man was standing on the porch and talking to me and I told him that his home had been my Nana & Poppop’s when I was a child. He invited me in and I showed the kids the living room which was decorated for Christmas.

Part way into the living room, the scene changed. Suddenly the living room had my grandfather’s organ sitting on the south wall where it had always stood. The kitchen table was visible through the open kitchen door and upon it was the glass “spooner” that my Nana used to store her teaspoons. There were metal kid cups and bumpy amber glass ones for adults sitting on the table waiting for us.

I could hear a piano being played in the basement- meaning my Poppop was downstairs playing to entertain us- but we went out the back door so I could show the kids the tree in the center of the driveway, with its twisted trunk and lined bark. The driveway was still the same black gravel, with the narrow strip of yard on one side partially taken up by the laundry lines which were drying the day’s sheets. The yard was edged in a high, tight-planted hedgerow, a natural fence of sorts, high on the lawn-side next to the picnic table and low on the drive side, along the Rogers’ back lawn.

The rest of the dream was snippets of memories throughout the yard and house: a birthday party in the backyard, a circular swing hung from the twisted tree, a parade around the block dressed in clown costumes & house-dresses with bright red lipstick mouths. Indoors again was the same tour: Nana & her sisters and my Mom & aunt sitting at the table talking as they got dinner ready, Poppop sitting next to me and playing the organ, 5 glee-filled kids sitting on the stairs behind the door to upstairs WAITING to be let into the living room to see what had been brought by Santa.

I loved that house growing up. The neighborhood was flat and the tree-lined street was home to many families with children near our age. I remember playing some game where you throw an object into the air, calling out a name, and everyone but that person runs from the object. The person called catches the ball or bean bag, then yells “stop” and tries to throw it and hit one of the other players to make them “out”. Although I can’t remember the name of the game, I can remember the smell of the neighborhood, the squirrels running back and forth on the telephone wires that lined the road, and that we played that game in the street until long after dusk when we would transition to catching fireflies before being called in to sleep.

The strongest feelings I experienced while dreaming about Rumson were those of safety and security. It was a warm and comfortable place, filled with happy memories and people I have loved. I haven’t dreamt like that in such a long time. I wonder where I may travel another time I am blessed with sleep…

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