Kevin was still sick this morning and I was starting to second guess myself. I kept thinking that maybe it was his head and started trying to find someone to take him immediately. Sue, a great person at the VA, worked hard and finally found a neurosurgeon that would take Kevin - but not until next Wed.
This made me really sit and think about things today. Even though I still feel really crappy, I had to run to the VA pharmacy to pick up Kevin's meds and I left him home with Parshall because he was still sick. This gave me hours to think and discuss things with Mary (wonderful FRC).
So here's what I came up with:
We are not going to Texas. And we are not going to that doc on Wed. The situation is that if we go to that surgeon on Wed, we can't go to Dr H. on Feb 10. It's already been how long without any action so what's a little bit longer? I also researched Dr H. fully months ago and feel strongly that he is our best choice. The hospital he is associated with has a new neuro-science ward that focuses on brain tumors and injuries. He also works alone - no physician's assistants and no residents. He is hands on and knows his patients inside and out. This is exactly what we need. I hated new residents rolling in every few months and us having to teach them Kevin's issues all over again. I want to be able to call the doc and say 'hey - this is going on' and him know that that's not the norm and not have to run all these tests to make sure I'm telling the truth.
So I am going to just watch Kevin (just as I have been) until Feb 10. I had already talked to a previous doc and asked if I should put Kevin back on the MRSA antibiotic just in case there is an infection so he is already being treated proactively.
I know that if I do see any signs of potential problems I will call an ambulance and take him to the emergency room of Dr H's hospital (hoping he will be on call if we have to).
Which brings me to why I feel confident doing this. Kevin isn't showing any signs of infection. I check his temp often and there is never even a low grade fever. If he had problems with the fluid buildup, he would be lethargic (nearly non-responsive), his leg would be shaking uncontrollably and he would be vomiting constantly (which btw stopped this afternoon and he is back to eating and drinking normally so I assume it was a bug - now if I could just get over it). I can also say with extreme sureness that he most definitely would not be talking better than ever. His cognitive state would have been sliding backward - not forging ahead.
I do know that I might be wrong. Heck the whole thing is a crap shoot as really - no one knows how to really fix things with Kevin because what he has come through is a miracle. So I am going to roll the dice and hopefully win the game. If I'm wrong, the guilt will eat me alive so please keep your fingers crossed that I'm right.
First 2 from the Nov kit!
11 years ago
5 comments:
I'm glad you have a plan. It sounds good. I guess when you are sick right along with him that makes me also think it was a bug or something too. I don't know- so has the swelling gone down at all? I'm glad Dr. H can see him in Feb.
Have a great weekend! :)
Kathy in IA
Rough week Leslie. I'm just catching up with your week as mine was a little hectic as well - not like yours..just work / kids / husband / insurnace / every day things. I'm glad you found this new Dr H and hope he is everything Kevin needs. You are right - at a teaching hospital, it's like a revolving door for patients who have long term issues. New residents come in , reorder the same tests, get to the same point the old residents were at and boom, time for new residents. we see it where I work and many time we see the same patients for the same thing over and over and over again. think it comes from a lack of real "supervision" of the residents, but then, what do I know. Only been doing / watching this cycle for 25 years at the same VA.
Hopefully Kevin will do well until his appointment and then will benefit from a dedicated doc. You are making the right decision.
Hallie
I am praying that it all works out and I'm sure your instincts are right on with Kevin. There is a stomach flu going around AGAIN, so I'm sure that's what it is too. Have a good weekend, Leslie, and I hope you and Kevin feel better.
Sorry to hear you guys have been sick. I hope it was just a bug since you got it, too!
It kind of struck me as strange that after so long, all of a sudden the doctors decided that Kevin needed to be rushed to Texas. It makes me wonder what that's all about. I think your decision sounds reasonable and I'm glad you have someone to help you figure out these heavy issues.
Well, you know I'll be praying for you and thinking of you all! Hope you and Kevin are feeling better today. Take care!
I'm glad that you are trusting your intuition on this. You are his mom and the only one that sees the WHOLE picture every day. I'm crossing all of my fingers that Dr H becomes a great addition to team Kevin and helps you all continue on the road to healing!
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