Wednesday, December 18, 2013

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.

Thursday, December 5, 2013

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.

Sunday, December 1, 2013

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.