How do we return this present?

Home for Christmas

Red and green are quite merry when decorating for Christmas but are less festive when dealing with wound infections in a hospital ER. How’s that for a holiday card message? It was inspired by our Christmas visit to Health Central hospital over the last couple days. Harken whilst I recount to you this Christmas tale:

‘Twas the day before Christmas, and all through the house,
Not a creature was worried, not even my spouse.
The invites to family had all been sent out
For the annual Christmas Eve Crampton cook out.

Low Country Boil

Alright, I won’t make you suffer through ten stanzas of corny holiday poetry. Suffice it to say, after returning from Raleigh on December 18, Shade had been taking it easy in his bed and healing. His scars looked pretty good for scars – nice, clean lines and no redness or swelling. Things seemed positive on the whole, so we decided to carry on with our tradition of Christmas Eve dinner, despite urgings and offerings from good-intentioned family that perhaps we should skip it or allow someone else to host. After all, preparing a big meal was a bit much to add onto our plate. However, after spending most of December away from home and engaging in very little Christmasy activities, we felt that this dinner was our only chance at capturing the real spirit of the holiday. But we simplified. Instead of the big roast dinner, decorated table and place settings, we opted for a fairly easy low country boil – a big boiling pot of crabs, shrimp, sausages, potatoes, corn on the cob and spices laid out over a picnic table. My brother Darren would handle all the fixings. Cooking time, less than 30 minutes. Dinner’s on!

(If you are easily grossed out, I suggest you do not eat any pudding while you continue reading.) During the days before Christmas Eve, Shade’s face started leaking fluid. More like gushing. He woke up one morning with a soaked pillow. But the fluid was clearish and didn’t smell, which was good news. We contacted the doctors at Duke and they said that the area was just trying to eliminate the swelling. They weren’t worried so neither were we, though it was a chore to keep the area dry and clean. They should have installed a spigot on his cheek.

On Christmas Eve morning, however, the stitching on his lower cheek had opened up and it was a bit gooey with pus. Blech! So Aitza took Shade to his primary care physician whose office is at Health Central. The doctor took one look and said, “This is way beyond my expertise!” and promptly sent Shade down to the ER. Crap! Back in the hospital. I drove down and met them. The staff were great and tried to make us all welcome and comfortable, but we still had that Grinch-stole-our-Christmas gloom. The staff pumped up Shade full of fluids and antibiotics, took cultures and blood samples, and said he may have to stay overnight. So much for our big dinner. We resigned ourselves to Christmas in the hospital and called up the family to give them the news. But after the culture results all came back green, the doctor said we could take him home with oral antibiotics. We left the hospital at 2 p.m. and called up the fam. Christmas Eve dinner was back on. We supped well that night with our extended family. We opened presents on Christmas morning as custom dictates. We drank merrily and played games with friends that evening, celebrating the blessing of having Shade home for the day.

The ER doctors had asked us to return two days later for a follow up. So yesterday, (Boxing Day for all you Brits who continue the celebration), I took Shade to the ER, assuming that we’d pop in and out in an hour. A member of the on-site plastic surgery team had a gander at his face and said it was looking fairly good, though the patch of stitching where the fluid was leaking had opened up a bit more, which concerned him a bit. Then the doc took the gauze off his leg scar. The site was swollen, hard and flaming red with purple bruising and it was leaking bloody fluid. Uh oh! Not the present you want to unwrap at Christmas. The intense swelling was quite shocking, as Aitza had cleaned and wrapped the leg the night before and it had appeared fine. One look at his leg and the doctor ordered Shade to stay for 48 hours of antibiotics and observation. Yay! Back in the hospital! So much for popping in and out.

Shade was hooked up to more plastic bags of fun juice. The doc sealed the wounds on his face with silver nitrate, which chemically cauterized the opening to prevent more leakage. Then he opened up a patch of Shade’s leg scar to release the swelling. It was mostly blood. No pus. (So we had the Christmas red but not the green, thank ol’ St. Nick.) The doc’s theory was that perhaps there had been a pocket of blood that ruptured and filled up the area, causing the swelling and bruising. (That morning he had had his first home physical therapy session and perhaps that had caused the rupture.) At around 5 p.m., Shade was admitted upstairs. His face, neck and chest were as red as an embarrassed tomato. Turns out he has a hypersensitivity to the antibiotic Vancomycin, which causes “red man syndrome.” (Don’t get all worked up, ultra-liberal hysteria hounds. It’s not a slur; it’s a description.) They replaced the antibiotic with another and he’s back to his normal color, cracker white. (Okay, now you can be insulted.)

“What a fun Christmas!”

Aitza, who had been working all this time and stressing as mothers do, finally got to the hospital at 7 p.m. and took up the night shift. At least Health Central has had a fantastic make over, and Aitza was able to sleep on a pull out sofa, not another recliner chair like at Duke Hospital. I returned this morning and Shade seems fine. No pain or irritation. He did have a lot of blood leakage from his leg, but that’s good as it releases the pressure. One more day of observation and if all is well, perhaps we’ll be clear of hospitals until his next surgery in six months. I think perhaps the Cramptons should get a holiday redo. What do you think? Christmas in January?

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.