Home slice

It’s been a crazy couple weeks since the post-Christmas hospital mayhem with hospital stays and infections and wound cleaning/packing/wrapping/antibiotics/fluids/pee bottles, okay, you get the picture. Shade’s been a trouper through the process. The boy never complains, though he does make me wash my hands a lot. I’m a scratcher.

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Ready for bed on the comfy couch.

For the past weeks, Shade’s slept down stairs on our comfy couch, which is usually my nap paradise because it’s thick and comfy and it sucks you in like you’re Boba Fett gobbled by a Sarlacc. (Nerd alert!) The couch’s only downfall is that it’s a bit “sucky.” It feeds on left socks and remote controls, and there’s hidden candy corns down there from Halloween 2009. And if you’re looking for your iPhone, it’s eaten a few of those, too.

We’re not sure why, but our homebound nurse care and therapies got cut. We’ve been doing therapy and wrapping his wounds ourselves on the comfy couch. Good job Arianny and Aitza are nurses. If you didn’t know, Aitza was a surgical nurse in Venezuela. She worked in plastic surgery. And Arianny follows in Mami’s footsteps. Her visit with us lasted a week. Together they made up a good schedule of cleaning and changing Shade’s open leg wound, while I gave them cheers and moral support and occasionally gagged because gross. I’m no nurse. I’m the guy that will make you a cup of tea while you’re squirting saline into that open muscle and mopping up any effluence. I call that Nurse Porn. Arianny and Aitza are always talking about the grossest stuff they experienced in hospitals, especially during dinner. I cover my ears and go, la la la, as they’ll regale an audience about the adventures of flushing an impacted colon while scooping from a plate of seven-layer bean dip. Or the time the had to remove a massive cockroach burrowed deep in a lady’s eardrum. Hwork!

But I had to overcome my fickle gorge and man up, because on January 5, Nurse Angel Arianny left for home in NYC, so Aitza took over and trained me with Wound Tending 101. I gloved up while she opened the packs of gauze and sterilized the tweezer. Shade’s right thigh now has a two-inch open gash that has exposed muscle but it’s healing up from the inside out as per doctor’s orders. It’s closed up a lot so far. You can see the healing day by day. Aitza had me remove, clean and repack, gauze and wrap the wound.

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Oh, yeah, Aitza turned 35 again.

Then it’s goodbye Nurse Angel Aitza as she lollygags in London. Actually, it’s a work thing. On January 8, she was sent to the home office back in the UK for an important spy mission or something. So Nurse Vincent is on the job. I haven’t screwed up yet, which is good.

But back to the “no homecare” thing from before – Aitza’s been trying to get the homecare here and she was told that the homecare was revoked. We’re in a tornado of calls to various doctors and nurses and social services and (shudder) insurance to get the homecare and therapies reinstated. Yay, fun with bureaucracy.

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Forgive the mess. We’re remodeling, too! Like we don’t have our plate full already.

Meanwhile, while waiting for Mami to come home, Shade and I have been sitting on the comfy couch, eating pizza and fried chicken and watching educational films like From Dusk to Dawn and Monty Python and the Holy Grail. Ni! Ni! Ni! (Nerd Alert!)

 

 

 

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Let the healing commence!

Ah, home. No place like it, especially when you’ve been stuck in a tiny hospital room for over a week – after having your face sliced open and stuffed like a Christmas stocking with other parts of your body – being poked, prodded and probed every 10 minutes by doctors, nurses, med techs and elves, the latter a product of hardcore hallucinations from prescription opioids and sleep deprivation. I’m either describing a miraculous surgery or the plot to a serial killer movie.

Winner of the Bubble Yum bubble gum chewing competition

When last I wrote, Shade had just come out of surgery. Both Aitza and I were not prepared for the sight of our child’s face. The doctors had talked about swelling but the size shocked us. And the skin graft was also something unexpected. The surgeons came to the conclusion during the surgery that the skin was too tight and needed extra skin so they made the necessary decision to add skin. So when we saw the two-inch jagged strip of pale thigh skin down his face, we were both stunned. We fully understood the reasoning; we just were not prepared for the dramatic change in his features. Both of us questioned our choice to put Shade through this procedure. Was all this pain and deformation worth the end goal of Shade having a symmetrical working face? Was his situation so bad before that we needed to subject him to such pain and suffering? I mean, we’re making decisions for Shade, and he’s trusting us to make the right ones, but how can we truly know if it’s the right choice until afterward?

Such thoughts can drive a parent into a spiral of severe gloom because unless you’re clairvoyant, you don’t know what the end results will be for any choice you make. And after you’ve made the choice, you have to deal with the consequences if it turns out to be the wrong choice. Back in December 2015, when we chose for Shade to have a second gamma knife operation to prevent him from having a second stroke. We took the risk based upon the information we received. The result of that operation was that six months afterward, Shade had a second stroke from a burst blood blister formed by the operation. It completely debilitated his left side. All the progress he had made was lost. In fact, he was worse off than after his initial stroke.

So watching our son suffer from his latest post-surgery pain messed with our minds because we chose to put him through this. I feel for Aitza especially because she never left his side. She “slept” in a recliner chair by Shade’s bed every day and was with him through all his agony and hallucinations and despondency. She was with him when he became so severely depressed that he said none of his friends would ever want to see him again because he was deformed and he wished he was dead. She held strong through all those heart-breaking moments.

Shade shows how to work a jaw muscle.

Just to set you at ease, Shade is no longer depressed. We think the heavy drugs caused much of that. After he hallucinated about an old lady trapped under a car inside his hospital room, Shade himself chose to go off the drugs and manage the pain with just Tylenol. He lightened up afterward and was even able to laugh about his massive cheek. After all it’s so big, if he walked into a bubblegum chewing competition, the other competitors would take one look and swallow their gum. Chipmunks see him go by and carve statues to their new god, Cheekzilla, he who holds infinite acorns.

The doctors were happy about Shade’s healing and he and Aitza were finally released from the hospital and got to sleep all day and night in a hotel. The doctors had first said that Shade could only have liquids for a month, but they changed their minds and said he could have soft foods. Soft foods? Bah! After I flew back to Raleigh on Sunday, I got him some smothered chicken from Texas Roadhouse and he scarfed it up. He’s got a super cheek now. He could chew cinderblocks.

Hanging with the Clauses

Yesterday we had a last visit with Dr. Phillips the plastic surgeon. He reiterated that the swelling will subside over time. He also stated that there’s excess muscle, fat and skin in there which can be chipped away at a later surgery to produce a symmetrical visage, much like a sculptor might remove excess marble to create a masterpiece. He was very positive about the final results, which eased our stress.

As we were leaving Duke Hospital through the Children’s Center, the staff had set up a Christmas area with carolers, a Santa and Mrs. Claus, and cake and toys for kids. Shade got a picture with the Clauses. Then one of the happy elves gave Shade a stuffed bear and a gift card for Target. It was our first real Christmas moment this year and I cried like it was a Pixar movie.

 

Flight home

By 8 p.m. that night, we had hopped on a plane and made it home to Orlando, where Mayan was waiting to see his big brother. Shade got visits from Abuelita and Bubu (Aitza’s parents) and Uncle Darren late night and from Dadabob (my dad) this morning. And now I sit by his bed writing this while Shade scarfs up scrambled eggs and heals. The future will show if our decision this time was the right one, but now that the pain has subsided and Shade’s surrounded by family at home, we can at least be happy that the stress of the hospital experience is over for a while, enjoy the holiday spirit and focus on Shade’s progress.