The Magical Healing Powers Of The Elusive Orange Binky

June 1, 2012 at 3:28 pm 4 comments

Just when I thought that my days as a “binky bitch” were numbered “ultrasound guy” stuffed an orange binky in Rex’s mouth and suddenly all was right in the world again.  Clearly orange is the new green.

The discovery, or rather re-discovery, of this little melon-colored miracle worker couldn’t have come at a better time for us, since in just shy of 24-hours Rex was going under the knife to get his heart fixed.  “Mr. Binks” might have served him well in the NICU, but “Big Orange” was going to have to help to him through this next stage in his road to recovery.  As a result I almost feel as though “B.O” is somehow symbolic or something.  It is, after all, he that marked the beginning of our journey here at the Lucile Packard Children’s Hospital (no mom, it was not named after your cat), he who soothed a restless Rex as he was taken back into the Operating Room for Open Heart Surgery, and he who dutifully sits by Rex’s bedside as he recovers in the CVICU just waiting to be sucked on again.   There is no doubt that these last few days have definitely been challenging — at least for us.  Luckily for Rex, he won’t remember much except for the part when “mean daddy” forced him to ditch the binky and lie on his side while they took a chest x-ray.  (Mommy just wanted to cuddle)

It seems like forever ago, but it was only Tuesday when we arrived in Palo Alto (bright and early). After a brief nap at our only slightly sub par hotel (but not nearly as dodgy as the ones I usually pick out for us) we headed to the hospital for Rex’s pre-op visit.  There was no question that Rex was in the building once we reached the admitting office as he took no time to “announce” his presence.  While Rex may have heart issues, he certainly has a healthy set of lungs.

Just before they took him back for surgery. Smiles are kinda forced.

In preparation for surgery, Rex had his (who knows, probably) 35th ultrasound with the aforementioned, most Zen-like technician ever.  In addition to his binky “peace offering”, Santa Claus (as I like to think of him) also seemed to know how to do this “reverse swaddle” thing whereby Rex was totally confined but still fully exposed for the procedure.  To be honest, it was like the kid was at the Four Seasons; he was so relaxed that he fell asleep.  He even snored.  (Note: The same tactic did not work hours later when they did the blood draw. Clearly he takes after his daddy, as mommy doesn’t cry when she gets jabbed :).) After completing all the prep work, we met with the surgical team and got the play-by-play on the whole process. Dane listened intently; I went off to my happy place.  We were then sent home and told to not give Rex anything to eat after 2AM.  Not sure if any of you have ever starved a baby before but clearly it was going to be a long night for us, in a hotel room, with paper-thin walls.  Did I mention that the guy in the hotel room next to us looked like he might have spent some time in the state penitentiary? All I was hoping was that he had a soft spot for babies…

The hotel stay wasn’t the worst.  While my choice in properties didn’t have a turn down service, plush robes, bottled water or down comforters to which I’m accustomed, it did have running water and Cable TV – something I hadn’t seen since Dane forced me to get rid of it a few months back.  Yes, Rex might have had the orange binky but I had HGTV! I did waste anytime and proceeded to do my best to catch up on all the latest happenings with the “Property Brothers” but between the pending surgery and the fact that I was on day nine of a pretty intense outbreak of poison oak (yes, I managed to pee in a pile of poison oak on a run the other week) we/I didn’t sleep much (again) that night.

At 4:45AM we were both up and anticipating all that a set of eight-week old adjusted lungs could throw at us. Generally our “loudest baby on the block” does not disappoint but for some weird reason (uh, magical orange binky maybe?) Rex didn’t make a peep. In fact, Rex didn’t make a sound all morning.  I think he even decided to rebrand himself as “cuddliest baby on the block” too. Go figure. I was able to hold my little angel all the way up until the moment the anesthesiologist had to take him from me.  It was at this point that it all hit me and I may or may not have shed a tear, or three.

Almost immediately after saying our good-byes, Dane and I were led into the parent’s waiting room.  It was at this point that we were approached by all the peripherals: the chaplain, the social worker, the genetic counselor, the crazy lady trying to get us to sign up for some weird clinical trial (yeah, best of luck. Clearly they hadn’t met Dane yet) we weren’t really in the mood for all the small talk so we relocated ourselves to the (incredibly overpriced) cafeteria.  It took them about 90-minutes to prep Rex in the OR with surgery starting promptly at 10:30AM.  In an effort to avoid paying $25 for a half-rate slice of pizza we ventured across the street to the mall to eat lunch there. It was at that time that we learned that “Snowflake” needed heart surgery as well; her battery had died. At least “operating” on her provided us a much-needed distraction.

Immediately post op

At about 1:30PM we were paged and told that they were closing him up.  We were escorted to the Consultation Room to get the full report from Rex’s (completely amazing) surgeon — luckily he had nothing but good news for us.  Rex had done really well with surgery.  They had a slight issue intubating him at first because he has a narrowing of his trachea but they eventually got it.  Dr. Reddy was able to close his VSD, which he said was “incredibly large” (It was 12-13mm or almost ½ inch!), patch the ASD, and cut through the stenosis (or whatever the correct terminology is).  Dr. Reddy diagnosed him to have a mild tetralogy of fallot but said the fix was the same so the diagnosis was irrelevant. He gave him an excellent prognosis and with little chance that he will ever need any additional surgeries later in life.  Clearly “Big Orange” had done his job.

Currently Rex is in the CVICU, an ICU just for heart patients.  We were told that this was going to be the most difficult part on us as parents and they weren’t kidding for a myriad of reasons.  For one, I am having trouble with the fact that as sick as we might feel Rex is, there are kids there that are way sicker and it breaks my heart.  (Yes, I admit it; I used to think I could only feel this way towards dogs.)  The environment here is no nonsense. Every kid has their own nurse and the nurses aren’t here to make small talk.  The other morning when we walked into the room to see Rex, we were quickly escorted out and told to come back in an hour.  Apparently Rex had pulled out his arterial line and they needed to get it back in ASAP.  I definitely miss the “warm and fuzzies” and camaraderie I felt in the Roseville NICU but I understand the reason for the seriousness here.  I am just happy that our stay here should be fairly short.  (I hope)

Just before they took out the breathing tube. Notice the tropical attire, its like he is on a mini vacation.

As for Rex’s progress, other than the fact that he had taken it upon himself to start removing his own lines, they were able to legitimately remove his breathing tube on Thursday.  This was kinda a painful process for all involved because to do this they slowly wake him up and wait for him to get angry.  Because he had the tube in he would cry but no sound would come out which wasn’t fun to watch.   Once he reaches this state the team pulls the tube out. The plan was to give him three minutes to start breathing on his own and if he didn’t, they would put the tube back in.  Basically it is the same process a baby goes through when they are born whereby they need to take the “hardest breath of their lives” to inflate both lungs and get the alveoli’s doing whatever they are supposed to do.  Rex went 90 seconds.  It wasn’t fun.  Finally they got him breathing again on a CPAP machine, which is what he has been on since last night.  This is all relatively normal though, so we aren’t concerned.  They plan to drop him to just a nasal cannula tonight.

They are keeping him in the CVICU a little longer because of the issue with his trachea and because he has yet to fully inflate his left lung.  Again, all of this is normal so no worried there either.  They are still not allowing him to eat but he is allowed to suck on “Big Orange” so it is taking the brunt of Rex’s frustrations at the moment. We are hoping he will be moved into Recovery (3 West) by the weekend. At that point it is meant to be all downhill from there.

Dane and I are doing as well as can be expected. There isn’t a lot of room to just “hang out” in the ICU so we spend time in the waiting room just outside of it. Ironically there does not seem to be a wireless network here (how is Stanford so behind the times?) so I am forced to go days without knowing how Jessica Simpson plans to lose that baby weight.  It sucks.  The other issue we are facing is that we didn’t really plan ahead when we packed so we are quickly running out of clothes and the clothes we did bring haven’t prepared us for this tundra known as the Bay Area. Honestly, tt’s June. Why is it still in the 40’s at 7AM?! We did find a really great place (that wasn’t Chipotle) for dinner last night though, I can’t remember the name now, but take my word for it, it was good.

Look mom! No breathing tube!

Reunited with Big Orange.

My only other job at the moment is trying to locate a place where I can purchase a few backup orange binkies for when we return back home.  I plan to pick up one or two for Myles and Floyd as well.

But things are progressing. We are hoping to get him up to Recovery in the next few days and then home shortly thereafter. Thanks again for thinking of him this past week. I’ll do my best to update you with his status!

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Entry filed under: Rex. Tags: .

Sometimes you just gotta slow down and read a book…. Our Nurse, Chuck.

4 Comments Add your own

  • 1. Paul Self  |  June 2, 2012 at 5:12 am

    Thank you for the very entertaining and complete update. You will have to save all these postings for when Rex is able to read. Might be fun to share these with his girl friend (when he has one) and you want to see him turn the same color as “Mr. Orange”.

    It is ironic that both Rex and Snowflake had their hearts fixed at the same time.

    Love, Gran-Paul, or Grandpa, or Dad, or whatever

    Reply
  • 2. elisa  |  June 3, 2012 at 1:52 pm

    Michael and i cant believe what a great writer u are! Figured we best get all learned up here before we come visit!! Im so excited little rex is doing so well! C u soon. Xoxo

    Reply
  • 3. Grand Ma Self  |  June 4, 2012 at 2:16 pm

    I am so glad to see your latest blog, in a heart-breaking kind of way. Even though you write well and know how to do it in an entertaining manner, under the surface I can see and hear about what the three of you have been going through since Valentine’s Day. Pain only makes you stronger, for sure, but it sure has been hard to stand by and helplessly witness it.

    Now Rex will finally get to start again as a “whole” baby. We know he had a good start with developing his lungs, but now we might see even more smiles. What a relief!

    Again, great blog, Angela! Lucy just became very insistent that I change her last name to “Packard”. I don’t know why….

    Reply
  • 4. Hardcore Motherhood  |  June 11, 2012 at 2:47 pm

    Really glad to see this uplifting update. As for your poison oak debacle, may I suggest you invest in some of these nifty little devices? 🙂 http://www.magic-cone.com/

    Good thoughts coming your way!

    Reply

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