Long Day, No Progress

Originally posted March 23, 2021 -

Today was another frustrating and exhausting day.  Jacob was scheduled, yet again, to check in for a stay on Children's neuro floor to monitor his current seizure activity, check his labs, and change up his diet and medications.  When the nurse swabbed him for his Covid screen, she said he might still test positive since he had Covid within the last three months but it shouldn't be a problem.  Well, his swab did test positive and then they refused to treat him or allow him to stay.  After he was all checked in and settled in a room.  They said they just couldn't be sure it wasn't a new infection rather than showing the old infection, even though he has absolutely no symptoms.  I was very frustrated, because Childrens is essentially telling me they will refuse to treat my child for the next 90 days or so, unless their refusal to care for him causes an issue so severe that he becomes critical and then they would "work around" his Covid status.  I get it, I understand the need for caution, but at the same time my child's medical care has been suffering throughout this entire pandemic as his specialists are unable or unwilling to see him in person and run tests, so they simply throw medications at any new issue he is having.  So I had a moderate meltdown, told them I was going to pull him off all his meds and be done with the whole thing if they were going to continue to refuse to examine him while prescribing meds left and right.  That outburst won me an audience with the attending physician, who made me eat lunch so I would be ready to "have a difficult conversation" with her in thirty minutes.  

This is not the first time, nor will it be the last, that I have been forced to sit through a doctor very gently trying to explain to me that my son's brain injury is fatal.  That he will die, they just don't know exactly when.  That they can't stop his seizures, can't really control his decline, essentially they can do very little for him.  Maybe I need a T-shirt to wear to the hospital that says "I already know he's dying."  Because as harsh as that sounds, I am quite aware of my son's condition.

 I have a child who will not be healed this side of Heaven.  The Holy Spirit helps me carry that knowledge every day and not be overwhelmed or consumed by it.  

I don't expect a miraculous recovery.  I don't expect him to walk or talk or do any of the things that many brain injury patients can eventually do.  Jacob was abused severely and repeatedly.  His condition is as grave as it is because he suffered multiple episodes of trauma that went without medical treatment.  Every time we see a new neurological specialist, there is never a doubt from any of them that not only did he suffer severe non-accidental head trauma, but he suffered it multiple times over an extended period of time.  

Why is that important?  Because Jacob's biological family continues to deny that he was injured, and is preparing a defense for court that he was born with problems.  It's just infuriating to me.  Every time I have to have these conversations with Jacob's doctors, I wish the bio family could feel the same pain for him that I do.  But I will never get that from them.  There will never be guilt or remorse or any emotion at all from them and I have to learn to unclench my hands and let it go.  There will most likely never be justice in our court system for Jacob, and I have to let that go as well.

So, clearly it has been an emotional day for me.  I did have a very productive conversation with the neurologist today, where we went over his current plan in detail and I finally had questions answered about the drugs being used, why we are using them, and the specific risks some of them pose.  There is no clear path, no right or wrong way to manage Jacob's symptoms.  It is up to me as his momma to make the best decisions regarding his care to give him QUALITY of life, with very little emphasis on quantity.  And when a new member of his medical team realizes this will always be my goal, we can once again move forward together with a plan for him. I just wish we could skip the difficult conversation every time a new doctor shows up.

 On Tuesday he will be returning to the same hospital to get Botox injections in his legs.  Apparently it's okay for him to be there for procedures, just as long as he doesn't stay overnight.  They only test the patients that are being admitted.  I guess he would only be potentially contagious if he were going to sleep there!  Again, I'm all for being safe, but the physicians agreed today that the hospital policies are not keeping up with current information.  They tried to override them so Jacob could get what he needed today and they were unsuccessful.  So Jacob is tucked in his bed here at home sleeping.  I think I'll let his nurse have the rest of the week off like we had planned so I can enjoy some extra snuggle time.