Passover Entropy and Other News

I started preparing our home for Passover.  Yes, I know I've still got Two. Whole. Weeks. Whatever, I'm starting early as a kind of insurance against last-minute craziness courtesy of Bubbles. Laundry and kitchen duty have fallen, like the leavened cake crumbs of yesteryear, into some disuse. People, the ensuing disrepair these areas are experiencing ain't pretty. And today Bubbles's therapist came over. So I just shrugged and said "Welcome, we're so glad you could make it. Please notice the room we're working in is is an oasis of beauty and calm in a sea of Pre-Passover Entropy." She laughed graciously, and got down to the brass tacks of Bubble's torture session. (If you've ever worked with a really tough personal trainer, who keeps pushing you for more when you are totally DONE, you'll know what I mean.) I settled into my usual role of cheerleading Bubbles and learning the moves so we can do them on our own.

Did I mention that I'm cleaning for Passover? So today my dear daughter does something really nice. The Princess and her brothers have been pooling their money in the great bank of kids. (To which I owe, to date, $42.50, a new safe, and a collectors item of some sort.) I understand they were saving up to open a toy store.Recently there was a split, as the Professor wanted a more stable choice, and the Princess wanted to buy some things now, and Sporty had only been roped into it to begin with and wanted out. They are now each running their own operations. The Princess's share of the money was burning a hole in her Hello Kitty tin money box. Not a good situation in her estimation, and she set out to remedy it. She and Sporty headed to the bakery on the corner and bought goodies for the kids except Princess. When she got home, there was a battle royal.

Apparently, Princess offered Sporty a cupcake like the others or half a black-and-white cookie. Ever the connoisseur, Sporty went for the latter option. Which left the other half for the Professor. Who was upset.

Because Princess spent all her money, ill advisedly -hey, she didn't even get any!

With as much grace and aplomb as the Professor could muster, he turned down his half of the confection. Princess promptly told me to have it instead. Professor nearly blew up - he wasn't sacrificing yummy food for ME. He wanted Princess to have it . . . and she wanted him to eat it.

In the end, I split the remaining half, leaving them each with a quarter of the cookie and strict instructions to eat outside. I mean, hello? Doesn't the current disorder in the house tell you ANYTHING?

My beautiful, wonderful, loving kiddies each slipped me half of their cookie with a wink and a smile. I had been soooo careful to give each kid both the black and the white (being mindful of an apocryphal story about their dad and a sister of his) in their quarter. Due to their total lack of coordination I only got chocolate.

Muddy Waters

The kids were off of school today - yes, all of them. And yes, that rarely happens. And yes, I had grand plans for taking them to the Great Outdoors somewhere.

And G-d had other plans. Remember the  how we learned to expect the unexpected and the car that would not start? Today's challenge, should we choose to accept it, was to stay home and sane. At the same time. I guess I could have booted up the computer and let the kids take a bash at MathBlaster (or whatever its newer cousin is called). I could have called in sick (well, I've got three vomiters on my hands). But I didn't. I saw the day through with flying colors and I deserve all the pats on the back I can get.

It was a hot day, so I got out the hose - yes, I do know there's a drought on - and we filled our favorite spot in the backyard. And oh the ecstasy of mud. We painted the garage door and the backyard patio.We went wading, and contrary to Polly Chase Boyden's assertions we do know how nice the mud feels between our toes. Oh so squishy and squiddgy and MUDDY. We painted ourselves and each other a deep, deep brown.

And how sweet we sounded as we splashed and we laughed and pitter-pattered in bare feet on cement flags.

Not to be outdone, our bathtub now sports an inch or two of tantalizing grunge.

G-d loves me

I bring as proof this evenings events.

After a morning spent in the car with six kids delivering packages, I was pretty beat. Thank heaven for a nursing baby, I had my excuse to go sit in a quiet room while Daddy took care of the little monsters  cuties. Once I and baby were refreshed, I saw to the refreshment of the others. That done, I was finished for the day.

But. But. But. We were hosting a dinner party for 80 (together with some friends - that much of a super mom I'm not!), and had to be there. The other moms and I did what moms do best - kept our kids from killing each other, and our menfolk fed. The menfolk joined in some spirited song and dance, and kept things lively for us.

Everyone's plate full, all of our children gainfully (or at least not dangerously) employed, off I went to a side room,designated as a play area for the gazillion kids in attendance, to feed Bubbles. Ahhh, a quiet corner in a hubbub is my favorite place to be. Did I say quiet? Frankly, I don't know what I was thinking to expect a moment of calm with the world whirling as it was. Just as I had gotten settled, Careful came to find me.

His tummy ached. I put it down to too much candy and too much fun and empathized gently, still sitting with the baby. Bad move. Careful tearfully moved away to "play quietly nearby until I'm done" and in doing so let loose.*SKIP TO THE NEXT ASTERIX, ALL YE FAINT OF TUMMY and don't say I didn't warn you! Yes, he vomited. Yes, his half digested dinner. Yes, all over somebody else's toys and carpeting. And Yes, the rest of the gazillion kids piled in to see what was going on, grinding the stuff into the carpeting, and trailing slime as they went to tell their mothers and brothers.

* Okay, so I can definitely handle this. All I need is some seltzer, some paper towels and about two more pairs of hands. I deposited Careful in the Professor's care hugging a garbage can. I left Bubbles with milk dripping down his chin and began the search for a few good hands. I came up with some paper towels and a water jug, and made it work. I made my apologies, and (as things were nearing an end anyway) piled the kids in the car to head home. Daddy would follow later with the Professor once he had seen things through.

I turned the key in the ignition, thinking only of warm bubble baths for all of us followed by cozy beds. A grating, rust-flaking filled the car. Once, twice, thrice. I stopped - hoping to rely on the "try again in a minute" method, when we heard a loud ticking in the silent night. "It's a bomb!" Sporty yelled. "Why aren't we getting out? Where's my Daddy? Why isn't he driving us home?" (Shout out to our family on both sides of the Atlantic: Today's date of 14 Adar explains Daddy's absence at the wheel.)

So, we dragged everyone back inside, leaving them with strict instructions to sit together on the veranda. I grabbed a friend and fellow hostess and we tried to jump start our car. Nothing doing. Technically we could have walked the seven or eight blocks home, but we had no stroller on hand, and some very tired kiddies. In the meanwhile, Careful found himself a spot in full view of, well, a lot of people, and repeated his earlier performance with much gusto. And tears, as his Mommy was nowhere to be found. In the throes of the moment he forgot that I was outside working on the car, and forgot that he was supposed to stay put with the others.

In the end, we left a 'will not start, please do not ticket' on our car, found a guest to drive us home in friend's car and piled in. Our friend only requested we carry a bag for Careful. Once seeing us safely home, said guest turned around and returned the car to starting point.

Now, what would I have done if we had the same scenario . . . on a lonely road on the way home? In an unfamiliar park, miles from home? I tell you, G-d loves me!

Thanks for this post are due to my brother, Mr. Tidy, for reminding me that my work on this blog is far from finished, and I'd better get back to writing.

Parenting Success!

The Princess was indulging in one of her favorite pastime, singing at the top of her lungs. This was frustrating the professor, so he retaliated by getting in her face. (Yes, she sings on key.)
A few minutes later, Princess prances into the room with a huge grin on a her face. She approaches me, close enough to share her exiting secret.
"Mommy," she said, face glowing "The Professor was annoying me, so I ignored him, and after a few minutes he gave up."

So they do listen to me. Sometimes. Thank G-d.

A Comedy Of Errors

Before I get to the meat and potatoes of this post, a little highlight on the Professor. He got into the car when I picked him up from school, crossed his legs on the dash and announced, "Mommy, Bubbles is never coming home." Whoa, there big brother! I mean, I know you miss Bubbles,we all do (wouldn't you miss the cutest infant to crawl this earth if he disappeared for two weeks with no return date in sight?). I explained - as we had on Day One- that Bubbles was born with some G-d given surprises, and he doesn't want to stop surprising us (by us I include our family and his medical team). So G-d only knows when he's coming home and frankly I trust G-d to make that decision!

So today. I arrived at Bubbles's bedside this morning in time to welcome our friendly Dr. B. He explained that Bubbles would be heading down to radiology for yet another test, mainly to confirm the results of the last test and give us specific actionable parameters. Dr. B. is a surgeon, they like to act on a problem. And Bubbles can't eat until the test is done. No problem, he's not really eating as it is.
Just as Dr. B finished explaining the procedure, Bobby arrived to take us downstairs. Couldn't have timed it better. When we got to radiology, the nurse checked over the orders and the patient. Just a formality, I'm sure, but THEY DIDN'T MATCH. Apparently, there was supposed to be a dye inserted "per rectum", but our Bubbles, well, he doesn't have a rectum. Those of you who are familiar with James Herriot will be very familiar with this condition as manifest in the porcine world, and will know that nothing (thermometers, liquids) can go up that way. Regardless, Bubbles and I hung out whilst everyone got in a tizzy calling for more precise instructions. I did tell the technician that in the past they have done similar testing through the mucous fistula, and in fact that is what we ended up doing. Once we had the orders right, the nurse proceeded to give an IV dye through the PICC line, only it didn't work. I saw them uncouple the PICC from the IV upstairs and it was working then . . . but not now. We were unceremoniously shunted back upstairs to fix this situation. Perhaps we'll be able to get the test done later, no eating allowed in case it is sooner than later.
By the time we'd gotten upstairs our nurse contacted the NICU to get one of their nurses to deal with our teeny-tiny veins. Their was no one available to come help us, so we were on our own. Three nurses and one surgical resident later, we had a fresh IV port in, and a screaming baby. Great preparation for a test which requires him to stay still. Asking a three month old to stay still. A three month old. To stay still. Easier to get Mount Everest to join Mount St. Helens for a poker game.
Once we got the green light for our procedure, we were in such a rush we couldn't wait for transport to send for us, so our friendly surgical resident ("Test or Bust! We will make it happen!") wheeled us down. I think he was extremely interested in the study for some murky ends of his own. And then the fun began in earnest. One nurse and resident at the foot, struggling to draw blood. One nurse and I at the head struggling to get Bubbles to drink some dye. One radiology tech scurrying to ready the machines. One baby screaming and kicking, and one aimless nurse just running for the fun of it. Everyone in the know was muttering about the difficulty to come - taking still pics of a squalling infant. Once we were convinced that none of us could do more than we had, the radiology tech and the nurse at the head hog-tied Bubbles, who promptly fell asleep. G-d loves us! In twenty years or so, when Bubbles and I have gotten over the experience, I must send him back to shake some hands and thank them for putting up with him in his time of need.

Vampires and Vipers

Bubbles has now been in the den of Vipers and Vampires for six days. So much for our earlier estimates of a day or two!

His daily routine, as far as I can tell is ingress and egress of fluids through, oh, nigh on a gazillion holes our friendly nurses have punched in his arms, legs and head. Sometimes they are testing, testing, testing his blood for clues to infection and so forth. Sometimes they are giving him antibiotics and other controlled substances (morphine, anyone?). At other times, he is hooked to the more innocuous "regular IV fluids". He was NPO (NBM for the English speaking) until day four, and then did not tolerate a challenge feed. Hence, fluids to keep him from getting dehydrated. The pediatrician warned us that if he goes too long without eating, we may have to start him on some form of "predigested nutrition" (makes you think of little birdies in their nests, doesn't it?) The nurse kindly clarified that terminology - "too long is when it is no longer a good idea to be without nutrition". Thanks Nurse J, that was clear as mud. But I digress.

When Bubbles let his trial feed loose, they threaded a naso-gastric tube in to suction out anything remaining in his stomach. It was obvious to those in the know that his intestines were not doing anything with the milk but sending it back up. When I asked how they knew, they pointed to the container of vomit hanging behind his bed. So? You have a Matisse there, he has vomit. Apparently, the nice amount of beautiful dark green it held was not just there to be pretty. In fact, we were all rooting for less output, and that, clear. 

Of course, with all the poking, prodding, and peeking the doctors found even more to fiddle with. 

(Just so y'all know, I am not anti doctor at all. Some of the most wonderful people in my life are doctors. It's just the syndrome they all seem to share "let's see what other care we can give" gets a little much sometimes.) Apparently, thrombocytopenia reared it's uninvited head, coupled with a rise in temperature, and subsequently a day of fevers and spikes. I explained to Dr. A, head of Pediatrics, who was holding down the PICU fort at the time that this was a chronic situation, we'd been dealing with it since our first go round in the NICU. You know, as one of those things we often see together with . . . Dr. A was unimpressed, and ordered a transfusion. Granted, Bubbles only had about a quarter of the usual number of these blood cells in his system, so we did as advised. We also dropped the two antibiotics Bubbles was already on in favor of four others.
One to catch the gram-positive yuckies, one to counteract the gram-negative bacteria, one in case we're dealing with a yeast. And one ring to rule them all. Since were now doing even more meds-in-blood-out action, we will be having Dr. E up to the PICU to place a PICC line, so that we don't have to keep pricking new veins when the old ones bottom out. Yes, Bubbles has the little red pattern of the well pricked (shout out to my Londoners here I think the nurses were vying for the best Seder table patterns) on his hands and feet and arms and legs.
Did I mention yet that we discovered Bubbles to be anemic (I think it was on day four)? Dr.B, the surgeon, told me that he's certain that it's a chronic anemia, such as one usually sees with breastfed babies. We agreed to leave it alone until we get Bubbles home where we can administer iron and vitamin C supplements. Betcha didn't know that Spinach and Orange Salad is a really good mix, as the vitamin C helps your body absorb iron. Well you know now. No-one can say I'm stingy when it comes to sharing what I've learned. See, I'm kind like that.
Today, day six, I am informed that Bubbles iron is becoming close to the limit. Apply here if you want specific numbers. We're praying that it will pick up now that he's eating sometimes. I've been told that the transfusions for iron - in contrast with platelets- are not a very exciting prospect. It may even affect his come home time.
Speaking of which, with Dr. B. and the Infectious Diseases people (welcome to our team, the latter!) out of town for Turkey Day, we await there pleasure discussing a discharge day. We may be able to bring Bubbles home in the next few days if we can wean him to fewer dosings of his cocktails. It's just not practical otherwise as we'd have to have a home health aide in to dose him up, and that just wouldn't fly if it's multiple times a day.
So this brings us to yesterday - his temperature down for 2+ days, little clear output from his tummy, little pain, and holding down some Pedialite- our little one was bumped out of the PICU! Thank G-d!
And today, spent a nice few hours with the rest of the family at a beautiful nature center, which was just what the doctor should have ordered for us. 

Big Boy's Big Heart

I know you're all still recovering from the last post, but this is a quickie I couldn't resist: 

I took Big Boy with me to a necessary stop at the 99Cent store. (Yeah, I know, never take kids to a store. Especially one with toys in it!) He did not ask for one toy.

He asked for many toys.

For Bubbles, who - and here, I quote- has none toys or stuffs in the hospital.

Now tell me, can I stand by and be outdone in caring by a three year old?