Surgery and Recovery

Originally posted November 27, 2021 -

Jacob's hip surgery was finally completed on October 5th in Dallas.  The care he received at Scottish Rite was extraordinary.  He spent five days in a complex care unit where he had his own nurse each shift to look after him.  That also means I spent 5 days sleeping in a recliner in a glass room with no bathroom, but it was a good situation for Jacob!  He came out of surgery in a cast that started at the bottom of his rib cage and ended at his ankles, and we spent a good deal of time figuring out how to handle diapering and positioning.  He was HEAVY in the cast and very hard to hold due to the positioning of his legs.  It was rough on a little guy who loves to be held and snuggled and he was not happy.  We thought surgery would be the hard part, but the 6 weeks of cast care are a blur similar to life with a colicky infant.  Jacob rarely slept more than a few hours at a stretch.  He fussed and cried constantly.  We couldn't relieve his pain/spasms/itching....whatever was causing his crying at any given time.  His seizures continued to increase and nobody had any answers, they just doled out more medication.  He had constant tummy troubles.  He stopped participating in therapy sessions and would fuss when they tried to play with him or feed him.  Addison said her little brother was the grouchiest baby in the whole world!

Finally, we made it to November 15th and the body cast was removed.  Jacob has large incisions down each thigh, across each hip, and in the crease of each leg.  They are healing nicely but it's a long process.  He was in so much pain after the cast removal that I had to cancel an entire week's worth of appointments.  We simply couldn't move him without him screaming and hyperventilating, overheating his body and seizing.  Slowly, with daily hydrotherapy and range of motion exercises with mom, we are seeing improvement.  We still have a long road ahead of us but we hope to see his pain continue to fade and Jacob begin to attempt to move on his own again.

We are grateful the crying has stopped and that his pain is being relieved.  In its place though, is mostly silence.  Jacob has not been babbling or cooing or making any of his signature sounds.  He doesn't giggle, and we have to work very hard for even the occasional smirk or smile.  He sleeps a lot, and when he is awake his face is usually blank and he doesn't react much to things going on around him.  Some days are better than others.  His seizures are intensifying again and any type of stimulation sets them off.  I will conference with his neurology team in December, but I am unwilling at this point to add more medication.  Jacob already takes 12 doses of four different seizure meds each day, in addition to adhering to a strict medical ketogenic diet.  At some point I have to say enough is enough.

We just keep holding and loving our boy.  We play music for him and help him use his hands to touch his toys.  We give him kisses and swab his mouth and rub his head.  This was an incredibly invasive and difficult surgery and I know he is still recovering.  But I also know that every time he has gone through a tough time medically, we lose ground that never comes back.  Every single time.  The quiet is merciful, because he's not in pain anymore.  But there is no joy in the quiet for me, and it worries my heart.

All we can do is press on.  We are making plans for Jacob to attend special needs preschool a couple of times a week in January.  The Make-A-Wish foundation is busy designing an amazing sensory garden area they plan to build for Jacob at our home.  We will keep doing our therapy and work on getting stronger.  We will hope for his future and remain faithful regardless of what lies ahead.