Home Again

Quick update. We’re home.

And not a moment too soon. We discovered the sin of the Panera chocolate pastry Monday, thanks to Heidi. I was consuming two a day by Tuesday at 490 calories a pop. We had to get out of there, if only to save our waist line.

Regardless, we are glad to be home. The earliest we were expected to leave was three days post-surgery. Claire took up the challenge and shot for two and half days. When she heard the average stay was 5-7 days, we should have known she would have her heart set on setting a new record.

Now the recovery begins in earnest. We are cycling her pain meds and Claire is back up to full strength g-tube feeds. She’s a little champion.

Our little champion.

Update 1: Scoliosis & Kyphosis Correction

1:15 PM Mountain Time

Claire is out of the OR. Tiffany and I just met with Claire’s surgeon and he was pleased – “psyched” was the word he used – with how the surgery went. Claire just arrived on the PICU floor and we will get to see her in 90 minutes.

Surgery Details

Because of the severity of Claire’s scoliosis and kyphosis and because of her ongoing conditions, Claire’s care team elected to go with a spinal fusion. The other options available included growth rods which move with her spine as she grows. These are more appropriate for patients with more mobility than Claire.

Step 1: Make Room to Reposition the Spinal Column

The 100+ degrees of curvature for Claire in two directions leaves little wiggle room for the spine to shift. So the first step was to make her spine more maneuverable. The doctors removed cartilage between each vertebra. “Well then won’t the bones just rub together?” was a question we asked and heard from others.

No. The fusion of the spine creates a single entity, so no abrasive, adjacent movement takes place.

Step 2: Make the bones bleed

The hardware that is installed in spinal fusions is not what ultimately holds the spine together. The bones fuse to one another biologically. In order to promote the vertebrae healing (“fusing”) together, each vertebra is roughed up and made to bleed. As they heal, they fuse together into a single, rigid column.

Step 3: Stabilize the spine

The hardware is to maintain the shape while the spine fuses biologically. Two rods and multiple screws were anchored to implants in the bone. The first rod bears the brunt of the stress while the second rod plays the supporting role.

Step 4: Build barriers for infection

Scoliosis and Kyphosis surgery has some of the highest infection occurrences of all procedures. So finding a care team that has a record of stellar infection control is critical. Children’s Hospital Colorado is renowned for their infection control.

One way of mitigating infection risk is to pack a substance around the spine replete with antibiotics. These are the first guard against infection.

Step 5: Sew her up

Sutures around the muscles, then the subcutaneous fat layer and finally the skin close the incision.

And now we wait…

We were told Claire was still intubated by the surgeon and then learned (5 minutes ago) that the care team were able to extubate Claire. So she is off the ventilator and breathing on her own!

We will provide another update later this week before we get discharged.

Surgery Day: Scoliosis & Kyphosis Correction

5:30 AM Mountain Time, our day started.

Claire was just wheeled back to the operating room. Her spine is being fused today (from her S2 to her C2) to correct her scoliosis (sideways curve of the spine) and kyphosis (rounded upper back). She has more than 100 degrees of curvature in both directions.

This has been a long time coming. Our original surgery date in October 2017 was pushed back due to an ulcerative colitis flare.

We expect Claire to be in the OR for another 6-7 hours and then transferred to the PICU for 24 hours recovery followed by at least 2 days on the inpatient floor.

We will provide another update by the end of day tomorrow to let everyone know how the OR time went.