Summer and Surgery Prep

Originally posted August 4, 2021 -

I feel so weary.  I can only imagine how Jacob feels tonight.  We have had appointments the past two days, capping off a summer of medical visits and consults all leading up to his double hip surgery in a few weeks.  The summer started off rough, but we gradually gained control of his pain and Jacob has been able to enjoy the pool and water park several times.  I had hoped that we could use our week of VBS to gauge Jacob's endurance and ability to attend special needs preschool part time this fall.  Unfortunately his pain was too great for him to do anything but lay on his side on the front pew of the church.  He couldn't participate at all and slept most of the time.  With Covid on the rise again, his doctors do not want him in preschool right now anyway, so we will be getting homebound services this year.  

In July we rented an RV to haul all of our little guy's equipment and spent a week camping for our family vacation.  I'm glad that he tolerated the trip well and didn't have any major issues.  At the same time, it was sad to see how little he was aware of or interested in. Most of the time he was uncomfortable and simply wanted to lay down and be left alone.  The only thing he truly seemed to enjoy was the wind in his face when we were on the boat.  That and sharing a room with his siblings.  He was always happy to have them right there with him when he woke up each day.

The ketogenic diet that we started in May didn't go well at first.  He was extremely lethargic and looked unwell and he was dropping weight.  I had a hard time getting the medical staff to believe me until our clinic visit rolled around, and then they decided to be concerned as well.  They increased his calories and adjusted his fat/carb ratios.  He finally started perking up and having more energy.  Just this week they increased his calories again because he's still struggling a little to maintain his weight.  The diet has greatly reduced his small startle seizures that used to happen dozens of times a day.  The bigger seizures, where his limbs jerk, are starting to happen more frequently, several times a day.  We will do some adjustments on his medications after the surgery, but there just aren't many, if any, good options left.  We are grateful that for now he can still bounce right back after a seizure without intervention.

Surgery prep has been extensive, and we have met with neurology, pulmonology, physical medicine and nutrition in addition to our orthopedic team.  And we haven't even had our official pre-surgical visits yet with the anesthesiologist and the surgical team and the post-op therapists.  We may be scheduled for a meet and greet with the housekeepers and the lady in the gift shop...Scottish Rite is very thorough!!  We are aware that Jacob is a tricky patient and the surgery is long and invasive with a tough recovery even for higher functioning kiddos.  I'm exhausted but grateful for the amount of thought and planning they are putting into this procedure.  It's really important to me that we try as hard as we can to complete what needs to be done all at once, because I think (and the doctors agree) that if they have to stop the surgery and then go back in it will be really hard on Jacob.  Two surgeons will work simultaneously on both hips and do all they can as long as he is tolerating the procedure.  He will likely need blood transfusions during the surgery.  Jacob's heart and lungs are strong and we are confident he will do well.

 I'm normally very strong when it comes to dealing with all the medical stuff, but as I waited with Jacob this morning for another round of injections in his muscles, I texted Kyle that I really couldn't deal with doing this to my baby today. Yesterday I held him down and wiped his tears while they attempted to get 10 vials of blood out of the one decent vein he has left.  His little arm is purple.  And today I would soothe him while they did 8 injections of a painful, stinging toxin into his legs.  And he will never be able to understand why we have to do these things.  He will forever cognitively be a 4-6 week old infant.  All he ever knows is that he hurts, and his mama is there, and she doesn't stop it.  I can't imagine how awful it will be for him when he wakes up from this surgery.  I think I am permanently emotionally exhausted.  Today was topped off with a discussion with Jacob's biological mother.  Not her fault, but she always has particularly bad timing.  I know people are curious about our relationship with the bio family and I will share some thoughts about how we navigate that situation sometime in the future.  For now, our little guy is sleeping and I'm headed that way.