Tuesday, November 26, 2013

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.

Monday, November 25, 2013

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. 

Thursday, November 21, 2013

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!  

Wednesday, November 20, 2013

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. 

Tuesday, November 12, 2013

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.

Sunday, November 10, 2013

Stick 'em Up!

Today, the Princess, Careful, Big Boy and I got stuck up. Before you turn us in for keeping our noses in the air, we are NOT snobs. We went for our flu shots.
Now, I'm not a usually a big proponent of shots with no clear benefit. Take the flu shot for instance. Really, what's the worst that can happen to otherwise hale and healthy individuals without the shot? Getting the flu, spending a few days in bed with a hot drink of your choice and a good book. So, we never had them 'round here before. Now they tell me that we all need the vaccination to protect Bubbles, who is in a high-risk group with all his surgeries, etc.
I went first, to show the kiddies how it goes,and how stoic I can be. It worked for the boys.
There is nothing the Princess wouldn't do for her baby brother. This, though, was a real sacrifice for her and she moaned and groaned the whole way there. When we go there she insisted on being stuck last. And she asked the nurse if why they have not perfected an edible form of the vaccine yet. (News flash, there is a nasal spray, which does not hurt the arm so much. But the pocket, oh, the pocket feels the difference - today's medical attentions were FREE.) She wailed and carried on through the actual ministrations, but quieted as soon as we finished.
Careful sat on my lap for the proceedings, frowning quietly as the nurse closed in and then insisting he earned the whole roll of stickers for his cooperation. We bought him off with soda, which they had conveniently placed on the tea and coffee cart. This maneuver quieted the Princess, who was happy to have a coffee.
Big Boy climbed on my lap following in Careful's footsteps, which is when I noticed a decided aroma. For me to notice any smell means that everyone else in a mile's radius is also being heralded by it. He had his shot just fine, but couldn't wait for the others to finish their drinks and leave. Methinks the diaper situation affected him more than the pinch in his arm did.
And we get to see all the same nice nurses again in a month or so for Bubble's next surgery. They're all looking forward to seeing us again. They were quite impressed with our quiet approach to the whole ordeal.
If it's your first flu shot and you are under nine you have to get two shots, about a month apart. Lucky for me, the boys will need the second dose, but not my sensitive girl. I don't know if I'd be ready for such carrying on any time soon.