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?

Expect the Unexpected

Today we went for a routine pre-op contrast test.
And it didn't go so routinely. I mean, we had been warned that there were risks as with all medical procedures, y'know, so we didn't really think much of it.
We went from the Imaging Center to the PICU. One thing I have to say for the trip is it was fast. Bubbles was crying during most of the transfer, and they did not want me to feed him, and you KNOW how slowly time passes for a mother who can do nothing to comfort her miserable child. All I'm saying is with lots of help, we were transferred up to the PICU in record time.
Did I mention it was a routine test? I didn't even have a pacifier with me, much less carpool plans for the others. Whatever. I did have supper lined up, since I knew I was going to be out for a few hours in prime supper making time.
I stayed while Bubbles was made comfy and re-acquainted with his "pulse ox" and IV and catheter and other goodies. I may be painting that too strongly - he fell asleep on the last lap up and slept through it all. I did find my bearings with all the now-familiar paraphernalia. An especial feature of this go round in hospital is antibiotics. I was told that I could hope to bring Bubbles home in a day or two, once the medication stabilizes the situation. It all sounds very major on paper, it really didn't seem such a big deal in person.
Daddy picked up the others from school and heroically got them through lots of questions and supper and homework. Then, as he was giving a class tonight, and Bubbles was sleeping comfortably and cared for, I came home for bedtime and to sit with the kids.
I found I could not tell my son "there, there, you're all right" with any truth to it, so I sufficed with a lame "you'll be okay. you'll be okay". At one point I realized that I meant it. With G-d guiding his care, how can he NOT be okay? On second thought, maybe this is the new okay. This is a gift, this chance to recognize how much can go wrong, and how much doesn't go wrong.
I tucked five boisterous, healthy, happy youngsters in bed tonight. I changed diapers, in the usual fashion. I applauded strong efforts in schoolwork. I was hugged by many arms, just long enough to twine round my neck. I am truly blessed to be given this contrast test (home chaos shows up so much better on a background of hospital beeps) to help me recognize and appreciate my blessings.

The NICU, part 2

Due to hospital by-laws, I was transported by wheelchair to the NICU to see our beautiful, if not bouncing, baby boy. I would have done better going by tortoise, so slow was our progress. Eventually, we did get there, at which point I was left to my own devices. (I could have walked the floors, for all the nurses would know.)

There was a cheerful sign adjuring all parents and visitors to scrub at the scrub sink in "Bay 2".I don't know how it works in other hospitals, but Cedars-Sinai's NICU is divided into six large rooms, each called a Bay. See, I'm teaching you important things already. Like how to speak "Overstaying-our-welcome-in-the-hospital-ese". I spent my minute or so scrubbing my arms and being sprayed by the super soaker that is the scrub sink in Bay 2. Next stop was Baby's bedside. 

Baby's NICU home

If this was a typical sick baby log, I would invite you into my hysteria and shock on seeing the little awesomeness wired up and surrounded by glass. BUT . . . I am nothing if not atypical :). Instead, I'll let you in on a secret. This was not my first time meeting an unwell baby in the hospital. As a teenager, I helped out a neighbor by spending the nights with her baby while she was home with her other children. I even rocked him in a rocker and fed him. So, no shock factor here.

Still, a friend's baby and our Baby are not the same. Our baby had an IV dripping into his arm. The tubing was as thick as his fingers. He had another, thinner tube - reminiscent of a colorful Crazy Straw - in his mouth. This was there to relieve his stomach of any waste buildup, as of course, it had no place else to go. He also had a cannula delivering oxygen to his nose. Oh, and multicolored strands of wiring hanging from his foot, monitoring everything and anything the doctors could think of tracking. I sat and sang quietly to him- for lack of anything to say- while I waited for "his" nurse to come introduce us.
My eyes wandered the room, checking it out. That phrase sounds familiar; I hope I do not plagiarize. It was dimly lit, hushed (except the occasional rhythmically beeping machine) and sterile. The nurses wore a hodge-podge of hospital attire. The duty list of nurses was written out in a bold black hand on the whiteboard in the corner. There were 8 beds in our bay, only four of which were occupied that Thursday afternoon. Just across from us a ventilator hummed, keeping one of our room-mates oxygenated. I thanked G-d for all the healthy babies - mine, yours, hers- who were not confined to glass cots and ward procedures. 

So, what did you do today?

Warning: Looooong post ahead. And it only deals with the before lunch bit!

What can I say? This was a very busy day, and a lot for me to digest. You, my dear readers, are stuck with the fallout: I digest best by disgorging my thoughts on paper. Let's not be overly careful with semantics here, y'all know what I mean. So hold on tight.
To confuse the issue just as we begin, the excitement actually began last night. In honor of Big Boy becoming and even bigger boy and reaching the heady heights of three years old, we cut his hair. (Gasps all around. Some moans, too.) See what a big step this was here:

Big Boy Before

During The Shearing

This is haircut initiation Number Four for us, and I have never had to hold so much as a hand for the others. They were all excitement and grins. Big Boy was all trepidation and hold-me-please . Of course, I held him tight,(see the picture? proof that I make an awesome hairdresser's assistant - bet you wouldn't have thought of me in that position)shifting him around in my arms when necessary for the operation at hand. And before he could say his ABC's, the deed was done. The ponytail was no more, and our little face was actually visible, no longer hidden behind a veil of cascading waves.

Examining The Finshed Product

Sorry the last picture isn't the best -trying to fit in Big Boy's own examination of his new self and flashing in the mirror. . . Still, it gives you a great idea of what went down! Big Boy was so apprehensive about the whole thing, despite the propaganda job done by the Princess in the few days running up to this event. I do believe candy featured very strongly in her advertising campaign.

After the deed was done, the other kids organized the traditional march-with-song around the table. Usually, the birthday boy gets so "into" this activity that it becomes a disorganized run-with-shouting through the house. To the utter disappointment of his siblings Big Boy marched around the table once. With much coaxing. Then he returned to my lap, where he remained ensconced until bedtime. 

What fun would growing up be without big brothers and sisters to help you through these rites of passage? (No offense to any of you younger brothers and sisters out there -there's room for you in G-d's world too!)

Whew! We made it to bedtime. If you're still with me, let's fast forward to this mornings 5:00 wake up. Usually, Bubbles sleeps very contentedly until I wake him to eat at 6. Today, we pulled things back an hour, so that we would feed him next at 7, so that he would be "empty" when we took him in for some tests. Remember, it's just to rule things out. Okay, so you know we're running on empty of sleep.
Daddy dropped Bubbles and myself off at the Imaging Center, where we were greeted, and asked to wait in the lobby to be called. We wait. We wait and wait. Long enough to correct a whole page of Daddy's article for posting. Then we're banded, branded as a matched set, belonging together.  We proceed as directed to the window down the hall, present our wristbands and tell the lady what we're in for. As an added courtesy, we each get a sticker with reads "mult proc." For the uninitiated (hopefully that's all of you!) that means we're in for more than one procedure this morning.\Our lady of the window directs us to sit in the room across the hall. This wait is long enough to field a call from concerned family living far away. My little brother, all growed up and building a family. Sweet of him to call just now.
Finally, my hungry little one and I are called in for his ultrasound. Picture keeping 12 pounds of sheer hungry baby absolutely still for this. The technician was none too understanding either. I mean, the kid is only three months old. He hasn't mastered the freezing in place thing yet. And, Mr. Unfriendly Technician, I much doubt you did at his age. So thanks for doing your job and getting us some "serviceable" pictures. Maybe next time, you'll do it with a serviceable attitude. We really were not trying to start your day off with difficulty - a baby does not squirm with intent to do your schedule in.
Mr. Unfriendly Technician became very friendly once the job was done. Very talkative too. He knew that our next test was a VCUG, and he commented on it "You know, it's not so bad having these done when your as young as Bubbles is. I mean they do these tests all the time, and it can be kinda painful. But when it's over, he won't remember it. What I don't get is how adults get through it." And so on in the same very encouraging vein. Hello, sir? I am a mother, whose child is about to lie through that procedure. I don't really need your clumsy attempts at calming me. I was not worrying about the actual test until you opened your mouth. So . . . On to the next room, and a full complement of personnel for this one. All friendly. What a contrast to the last room.
Little Bubbles lay on the table, diaperless and fearless. He knew not, as I did, what lay around the corner. The doctor told me at just what point we could expect some discomfort -with the swift assurance that it doesn't actually hurt it's just uncomfortable, so babies tend to cry. Yeah. Uncomfortable. A euphemism if I ever heard one.
After an initial x-ray, everyone got busy in their battle stations as the nice nurse Rachel threaded a catheter. I am not going to draw you a picture here, (I do have one word worth a thousand pictures for my Baltimore friends here: urologist) I just stood at Bubbles's head and held his hand and talked to him. Except when I was looking over at the screen making sense of things. I was able to accurately pinpoint his bladder - okay, so it was full of contrast dye and looked like a big black blob on the screen- but I could not figure out what that chain of black dots and circles was. So I asked the guy manning the screen, and he looked at it for a very long moment (yikes!) before looking at Bubbles himself. They were the snaps on Bubbles's outfit. We passed the point of pain - I mean discomfort, obviously- with nothing but a single whimper from Bubbles. After that cry, he went back to grinning at me while I talked to him. And then we had the long wait until Bubbles let loose a fountain for us. The x-ray tech told me he had one kid who sprayed the opposite wall. (That requires another shout out for my Baltimore clan: tiger cage anyone?)
I say the wait was long, but that was only because I was in something of a rush. Because we were only seen at 11 for a ten o'clock appointment, I had to recalculate my day. We were supposed to bring Big Boy in to school for his initiation into the study of Torah, which goes hand in hand with the hair-cutting milestone. Of  all the days in the month to pick for these appointments, we managed to land on Big Boy's birthday.
Once the interminable test was finished, I walked to a prearranged meeting spot, and we were picked up by Daddy, making it by the skin of our teeth to the school. The Professor and Sporty joined our entourage in the hallway, and helped Big Boy feel comfortable with the big kids in the Pre-1 classroom.

Here Big Boy sits in the place of honor next to the teacher, who is coaching him on Hebrew Torah letters. It was quite an affair, with much singing and dancing on the part of the boys in the class and our kids. Of course, no party is complete without event-appropriate goody bags. Ours were shipped already filled cross country for less than the price of the bags here. Just some unsolicited advice here, and you're getting more than you paid for with this: Don't go nuts finding bits and pieces and junk to fill your bags with. Find yourself a full service purveyor and let them do the work. It was nice to be back in this classroom with this teacher, as he taught both Sporty (last year) and the Professor (four years ago). It's a small school, and the teachers remain available to past students, so we've been "in touch" all along. Big Boy of course benefited from this, his logic being if this guy is on such friendly terms with my brothers he must be okay.
When the party was over, I dragged around the house catching up on cooking and housework which went by the wayside with all our activities. I love partying, but it sure takes a lot out of me!  

Dreaded Phrase

"This is something we often see concurrent to the ARM Bubble's has - we're just going to (insert medical procedure/testing here) to rule it out. And then you will have to follow up with (insert specialty here)."

If I had a dollar for every time a doctor said this to us, I'd pay for all these procedures-and the hospital stays!- out of pocket.
According to my Gmail contacts list, Bubble's team is now 20 strong. Some of the contacts listed actually refer to DEPARTMENTS not individual team members. And counting.
Daddy actually asked the surgeon, when he gave us this line for the gazillionth time,why we keep hearing this. Dr. B. told us that most parents cannot handle knowing all the possibilities at once, so they kindly give it to us piece meal.
Right now, our focus is checking for spinal defects and possible back tracking in the urinary tract. Once we clear that, we can shift to surgery mode. Since scheduling surgery requires so many factors to come together, we have already scheduled it, without knowing exactly what will be done. We have to wait for testing to determine that. Once all that Cutting-and-Pasting is out of the way, we'll start on physical therapy, possibly speech and occupational therapies as well -- because, you know, "We often see developmental and cognitive delays concurrent to Bubble's presenting ARM. So, we're going to be proactive and enroll him in the Early Bird Avoids Unnecessary Difficulties Program. We're confident that he will be accepted to the Program with his medical history."
We know (because we've tried) how hard it is to join this program, so we held our breath through the application process. It seems that severe shortages of therapists and social workers don't get in the way if your case is referred by a doctor. If we'd only known this when Careful wast not talking, we may have secured services for him too!
Obviously, that wasn't in G-d's plan for us. 

A Day Off

[This is an old post that I did not manage to finish in one sitting, so am publishing it now]

Today, we all took the day off to enjoy a visit with our children's paternal grandparents. Grams and Gramps live many thousands of miles away, so we were very excited that they scheduled themselves a stopover in our neck of the woods.

Just how excited were we? Excited enough to keep the kids home from school. That may not sound like much to you, but we value education. (And keeping the kids occupied, and the mess out of the house . . . )

And we value the Momma-sanity that comes with a routine school day. Never say I'm not being honest with you, people. 

We had a rich man's start to the day, heading out for breakfast at ten. The kids raided the fridge and came up with yogurt to snack on in the earlier hours. Careful loves any food in creamy form (milkshake, anyone?) and helped himself to two - one regular, one soy based. The Professor professes an adverse reaction to dairy, and we're trying alternatives, so we have the soy stuff on hand.Whilst we adults breakfasted at a nice cafe, the kids took over all the available floor space for a spirited game of roly-poly. There was so much spirit roy-polying around, some of it could only find release in tears.

Gram and Gramps came, as usual, laden with gifts, carefully chosen to entertain. They did such a good job, the kids were wrapped up in their new swag to the exclusion of the rest of the world. Sporty was so attached to his new Lego helicopter that he opted out of the obligatory Grandparents and Grandchildren outing. That turned out to be a stroke of good fortune as Greystone Manor (aka Doheny Mansion), the beautiful park Daddy intended to shepherd all to, was closed.

A quick stop at home to pack up, and our visitors were off. . .It was a tighter squeeze than expected, and they missed their scheduled flight by 4 minutes. Thank goodness there was another flight about an hour later.