Contact Daniel

Tuesday, January 29, 2019

One week from surgery and we are back to almost normal! Which means no sleeping...

These bandages and pajamas - far behind us now!
Upon our discharge from the hospital the doctor gave mommy and daddy very explicit instructions:

"He (meaning me) can do anything he wants."

Ok so let me get this straight. I just came out from under the knife. My heart was stopped, cut open and repaired, placed back and made to beat again. But I can do whatever I want to do.

"If he has shortness of breath, he should stop whatever activity he is engaging in."

And then there's the issue of that red/pink line down my chest.

"Wash the scar every day. If you see any discharge, or if it looks infected come to the emergency room."

Ok, so what about school?

"Oh, that? No way. He needs to get permission from the surgeon first. Schedule an appointment to see him in a few weeks."

Ok, so again, let's get this straight: I can run, climb, be a general monkey and do "whatever I want/am able to do" but just don't go to school where I will be sitting for eight hours straight "resting" (except for my brain) rather than going stir crazy at home or climbing the walls there.

Perhaps that is because of infections and colds, but still. Let's not exaggerate.

Nevertheless as I embark upon my journey of recovery we sit here a week later in shock and awe. I occasionally need pain medication, but rarely.  I've stopped pointing at my chest and walking slightly stooped as I did those first few days. I've even stopped sleeping because, what with a a super-powered heart and all, I don't need as much rest as I did before.

Rest? Wait, I've never actually been one to sleep much anyway. I am on true hospital lag, meaning just a few hours hours of sleep can launch me through a long day with ease. Which really means that I am back to my pre-op self!

So physically I am charging ahead. Each day I look less and less like a human who has gone through surgery.

I can navigate the iPad as expertly as I did before the op!
Admittedly, I am a bit traumatized by the scars that are healing on my chest. They are a stark reminder that I really did freak everyone out, including myself, a week ago with record levels of stress in preparation for surgery.

Basically, if you saw me today you would think I were lying about OHS. You would think it was all a ploy to get your attention. The drama was intense and short lived and we never reached our worse expectations in terms of  potential complications and time in the hospital. Now, as we come down from the adrenaline that propelled us through those days, it's hard to believe it ever happened.

And from looking at me today, sans the scar, you would't believe it either.

I must thank you all for your prayers. With God's help I have powered through this sordid tale and am ready to surge on!

Friday, January 25, 2019

And on the third day, I went home already!

And now for the most shocking news of the week:

"And on the third day, they sent me home."
The (other) book of Daniel chapter 8 verse 8

Not 72 hours after my chest was slit open, my sternum broken and my heart stopped for some vital repairs, I'm walking back home on my own two feet with very few restrictions applied to my life.

It's a bit unbelievable, if not unnerving. With a fresh scar and still clutching my chest (whether in drama or in pain I have yet to reveal), I was released into the feeble care of my non-medical professional parents. They felt the same way after my dramatic birth and then after my first OHS and then after being hospitalized for RSV and later pneumonia and when they took home a flammable oxygen tank for me to sleep with over night. Who would release a child like this into the care of his mere parents? I would not.

But mommy and abba have been down this road before when mommy regrets not having gone into medicine.

The truth is that once we left the ICU we probably could've snuck out of the hospital for several hours perhaps to the zoo or a park and no one would've noticed. There was not really much observation going on in the regular ward. Suddenly mommy and abba were full-fledged nurses who had to ask for and administer my own medicine and were left to wonder whether I was showing normal signs of pain or the kind of pain that indicated CODE RED.

On the positive side, at home we will be free of crying babies and beeping monitors. We will not be bored out of our minds. But then again, mommy and abba will not sleep anyway since they'll have to use the non-technological methods of checking my vitals, like feeling for a pulse, etc.

On another positive note, at the ICU we took some
paparazzi photos with head nurse Knuckles McGinty!
The key to a quick recovery is to relax at the
ICU like it's a day at the beach!
(P.S. That blood collector attached to my body
is translated from Hebrew as: grenade!)
From the above picture to this one in 36 hours!
Theme song of the day:

Wednesday, January 23, 2019

Taking my recovery in strides ...literally

Rolling onto bigger and better things (or hospital wards)
I guess you could say I make OHS look easy.

Just 24 hours out from under the knife they were signing my release papers from the ICU, moving me to the regular surgical ward and encouraging me to Rise Up and Walk!

You have got to be kidding me. Twenty four hours after open heart surgery.

That was a tad mystifying to me as all I wanted to do was continue my drug-induced repose, but surely I will start utilizing these newfound suggestions to walk ... at midnight when my parents are trying to sleep.

Accompanied by my entourage as I leave the ICU behind.

In an effort to facilitate my swift exit from the ICU the doctors embarked upon a morphine induced removal of all my tubes and wires, something I was already trying to do since apparently RIGHT AFTER THE OPERATION. Being a child who doesn't need to sleep, ever, one surgeon reported that I woke up while still in the operating room and embarked upon a furious raid against those protrusions! I was immediately re-sedated and brought to ICU where I did a repeat performance just an hour later.

I am a warrior.

This time the doctors decided to do the removal themselves. I tried to help them by yanking quicker and faster, but they all agreed that was counterproductive. So with a little burst of morphine and some sort of relaxant I went limp and I stopped helping them. It took 15 minutes to unthread the wires coming from my heart, my neck, my sternum, my side and more. And with that I was ready for evacuation.

More than twice this amount of tubing
and wires was in my body.

Today was really a day of progress. A day to show the world the superpowers that we babies possess even as children. Our ability to bounce back astonishes the normal adult brain. There is even talk of releasing me tomorrow in order to set a world record! (Unverified) But most likely I will remain here for the weekend.

And then maybe I'll go run a marathon. That seems like the next logical step.

These guys miss me. And I likewise.

Tuesday, January 22, 2019

And now the Post-Drama begins

Cool, calm and collected. Pre-surgery. This did not last long.

And after a "short" and successful surgery I am doing exactly what my parents warned all the doctors I would do upon waking without rampant anesthesia running through my veins: Trying like HELL to pull out every single one of those 2,000 tubes.

Oh yea, and now the real games begin. The waiting. The monitoring of the monitors. The recovery. The breathing, or not. Me extubating myself (okay, I did not really do that, but I did pull out some horrifically fat tube from my nose), trying to rip out the newly sewn stitches on my chest. Things like that which tend to freak out parents worldwide.

Then there's the up and down of the O2 saturation. The fever that creeps up (in Celsius no less which is no help to mommy). All the little tremors that blip across my computer screens which the doctors tell my parents are irrelevant or are "lying" due to whatever else is happening that it must be measured by. So why are they there? No answer. Comforting.

Paddington made an appearance at the hospital! Which is largely ironic
since one of the nurses here looks like Knuckles from Paddington 2!
Waiting outside the operating room was a heck of a lot easier for my parents. It meant I was down under and I was in good hands. The repair was done well and I'm ready to surge again with blood flowing unchecked through my aortic valve.

I'm still in good hands with a crack ICU team around me. But the anesthesia is all done now which has created a dramatically less calm picture.

Here's how it went down. I woke up an hour after the OHS. I sat up in wild shock and horror and began thrashing around my bed. Eyes still sealed shut from exhaustion and a mouth full of dried blood, I was surely in some type of Gehenna. After wildly flinging off leads and swiveling around the bed, the team here heeded mommy and abba's suggestions of sedation. It seemed to benefit all parties.

Actually, pre-op was clearly fun and easy going as you can see.
And so I remain, under the influence. Occasionally I flutter my eyes with a gasping whine, looking for familiar faces. I threaten to thrash and then, after receiving reassurances that all is well, I drift back to sleep. I believe this will be my situation for a few more hours.

The truth is that all these little ups and downs probably mean nothing in the long run, but because my parents watch too much TV and because they are very bored right now just watching my drain pipes and IV drips, they choose to panic over every little beep.

They call it vigilance! Or, parenting.

And all will be well.

And I was feeling the love!

Monday, January 21, 2019

On our way, Round 2 commences

 "I lift up my eyes to the hills - where does my help come from?"
Psalm 121:1

Only a champ gives thumbs up on his way to surgery!

My teammates rooting for and praying for me before the big day

It's one of the stranger things in life to walk into a hospital on your own two healthy feet, showing no signs of distress and saying, here I am, open me up and stop my heart for awhile!  I’d almost rather be rushing there with an emergency to justify the scope of it.

Nevertheless, mommy spoke with a most reassuring doctor who gave an astute second opinion: Barring any miracle that had gone on in my chest cavity, the surgery will help me in all sorts of ways, relieving both the heart muscle and the high blood pressure going on inside my heart. So may as well go ahead with it now. The sooner the better in order to avoid long-term damage.

Hugs are helpful like prayers
Relaxed and ready for what lies ahead
When I last did this I was also healthy going in, except I wasn't walking on my own feet yet: I was carried in as a wee 8-month-old baby. Now things will be a little different. Because now my own feet do carry me, and they don't go where they don't want to go.

Let's switch that to a positive: My feet go only where they want. And I'm not much of a follower.

So it will certainly be interesting to what my feet decide to do this morning: lie docilely in the hospital bed or buck like a bronco in protest to the absurdity of it all?

Despite my best resistance, I am sure of one thing. I know where my help comes from. And the truth is that this morning I went in well and easily. I was possessed by a rare and deep inner peace. And many smiles, mainly to dazzle the staff at the OR.

"My help comes from the Lord, the Maker of heaven and earth."
Psalm 121:2

(Same as above but for you, Yasmin)

I prayed for them too. After all, they will miss me for a few days

Matters of the Heart Revisited...

I am still scarred from my first surgery.

Oh no, I'm not talking trauma. I was only 8 months old back then.

Oh wait, you're thinking of the long line down my chest? No, not that, although yes, it is still there.

What I meant was the scar on my face from when my unruly fingernails pulled out one of those tubes -- and took out a chunk of my cheek as well. Yes, permanently scarred.

(Mommy: note to self, trim Daniel's nails before surgery. Cut his hair while he's sedated. Life is good.)

Back then, OHS was much easier despite the fact that the actual procedure itself  was way more complicated - a six-hour expedition. But back then there were no other children to worry about (save for Lucas who was an unknown and microscopic presence at the time). Back then, aside from being really cute I was also immobile. And I was probably less impressionable and a tad less independent.

Here are some of those memories as we relive:

Pre-op Day



Moving into the regular ward

Welcome home! (Don't miss the video which oozes cuteness)

Wednesday, January 16, 2019

Sibling Q&A before the 'big day'

Some take us for triplets which is very
insulting if you ask me, three years
older than the tall and slender Raia.
Heart to heart (no pun intended, really) with my siblings about the impending "S" word a few weeks ago:

Parents: We have some news for you. Daniel needs to undergo open heart surgery.

Shock and rare silence.

Lucas: Who is going to do it?

Parents: A very good, experienced and reputable surgeon.

Lucas: Has he done this before?

Parents: Yes, thousands of times. In fact he was Daniel's (and his friends') surgeon eight years ago!

Lucas: Did anything bad ever happen in any of his surgeries?

Parents: No, never! Perfect record!! (Unverified, but quick comeback!)

Pause. Daniel goes over and hugs Lucas. Embrace lasts about three minutes while Raia sits in stone cold shock and silence. Questions ensue which lead to explanation: scar tissue, blocking aortic valve, etc.  

Parents: So, as the surgeon said, thank God it's possible to fix problems like this these days. You can't live with these problems, so we are grateful it can be fixed. Right?

Lucas (onto the next issue): Okay so where exactly is the membrane: in the heart or outside? In fact, let's break out the model heart and figure out this whole conundrum.

The three amigos (sometimes stooges)
are hard to separate.

Which we do, in addition to viewing several episodes of Chloe and the Nurb, and entire session - intended to guide siblings through a tough and neglectful upcoming few weeks - turns into a science lesson. 

Two weeks later at bed time.

Raia (as sulk descends upon her face): I'm scared.

Parents (rolling their eyes awaiting the stall-tactic excuses): Why are you scared this time?

Raia: That Daniel has to have surgery.


And thus was Raia's first and last mention of the impeding procedure, proving that despite the silence, her apparent disinterest was a ruse. 

Monday, January 14, 2019

Save the Date... and start praying!

It was New Year's Day and we found ourselves dining in the quaint neighborhood of Ein Karem gazing at the sun drenched view of staggered green hills.

And a hospital.

Yes a hospital. How ironic that the hospital towered into our sights on the first day of the year. Just to help us set our agenda for the coming weeks. Just to loom over us like a dark shadow reminding us that, now that the holidays are behind us, it's time to get serious.

Serious about what, you may ask. How to say this? Kind of like, how you pick a date for surgery when the surgeon asks you for one? Is it like picking a coffee date: You want to meet up for coffee on Monday? Sure! Would you like to come for open heart surgery next Tuesday? Yes, why not?

Here's me drinking up the holiday flavors
(hot apple cider)

So that is what has become our fate and now that we've stealthily avoided the issue since that fateful appointment in November, it's time to start dealing with reality. And so all of a sudden when I can count on one hand the days I have left in school until D-Day, I better start getting ready.

It all began in November when I went for my routine heart check up that turned out to be not so routine. After a long and boring wait a technician spent way too much time boring me some more with her magic wand of the ultrasound. That was followed by another test of my patience and the iPhone's battery waiting for the cardiologist himself to review the results. Then he decided he too would wave the wand again over my fluttering and bored heart while we waited to hear that everything was A-okay and we could forget booking another appointment for a year.

Those were not the words we heard however. In fact, we heard words about booking appointment for other such things like, gulp. surgery.

See, when I was 8 months old and I underwent open heart surgery to basically build the walls of my heart (Complete AV Canal defect), the surgeon told mommy and daddy there was a 10 percent chance they'd have to revisit this scenario for some sort of repair. And now at 8 years old, that 10 percent equals 100 percent in the realm of Babies'/Murphy's Law.

Since that first surgery I've seen a cardiologist for follow up every six to 12 months (except for that time when my parents missed a year) just to make sure I was ticking well. Two and a half years ago there arose a cause for concern and that cause has increased since then. Dramatically since the March checkup.

If you want to get technical, the official diagnosis is aortic valve stenosis. And if you want to just be practical, it simply means that something (like scar tissue or a membrane) has been steadily increasing in size for the last few years and is now blocking the blood flow and driving up blood pressure to almost dangerous levels.

So we are doing a sort of repeat performance. Same hospital, same surgeon.

Save the date: January 22*

*The information in this blog is not meant to be used for diagnostic purposes since this was composed by a non-medical professional Nor should the dates be written in ink as surgery can be postponed in case a bigger emergency than mine arises!