Fwd: Mom and Kyles day

I thought a real life conversation might make a good update on Kyles day.  Enjoy...

Spring 

Begin forwarded message:

From: Spring Bean <springcbean@gmail.com>
Date: May 7, 2012 7:32:02 PM EDT
To: Capture The Magic Blog <sabean1.climber@blogger.com>
Subject: Mom and Kyles day

Spring: Now I'm annoyed about the "big system" that I have no control over!

I'm waiting in the prep (it's Been almost two hours now) for Kykes endoscopy Etc without a real plan for what will happen afterwards. I'm tired of explaining Kyles needs over snd over. And having so many different opinions and thoughts. I hope this is worth it.

Alan: it will be, hang in there.

Spring: Will it. Where will I go tonight?  The hospital is so much easier than a hotel or home for Kyle. It reminds me that he really does require institutional levels of Care....Not to say that it's better for him but in a twisted way it's a nice break for me.

Kyle just went to sleep for the  procedure. Gi and colorectal are both saying sure he can stay but want to have the other team make up the strong medical justification for insurance...
I don't really care but I smiled politely and told them how nauseated he gets and about his large residuals and low sats... Anyway. I don't care I'm hungry and have a headache and am sick of the drama.

Alan: You are doing beautifully.  Get some food, get away from the situation and something should work out.

Spring: Gi says his insides look good. Francisis expects biospies to be normal. Then the next step is introduce new foods and rebiospy in 3 months.

Alan:  Biopsy results were not cool  we are not going to keep doing this five times a year.


Spring: Yea. I'll see how the rest of the info goes and then we can make plans from there. You felt like its worth it to do this. It's hard not to be emotionally up then down with each interaction because we've anticipated it so long. I'm trying to follow my own wisdom and not get too hooked by incomplete data.

So far the info and possibilities are the same as we suspected. Because of our knowledge and life with kyle there is rarely something that blows our socks off now   

It could be liberating for him to be able to eat more things without risk. Although I'm not enthusiastic about reintroducing things he hasn't tolerated. I consented to a study being done by the Gi guy in Denver. Sounds like his expertise is as great as these guys here, not that I'm saying I want to start over with another new doc but simply that we have another option. Denver may feel less challenging to follow with. Cheaper shorter flight...

Alan:  No comment yet.  Let's see how we do.

Spring:  Agreed. I feel disappointed  in the preliminary report. I feel caught in a river current that I can't control. It's not a pleasant feeling for someone who loves control.  

Alan:  I'm done splitting up the family for medical travel.

Spring:  Yea I know...

It's amazing how whatever the family wants is never he same as the hospital plan. If I wanted to go I'd have to stay if I wanted to stay Id have to go. Why?  (that's rhetorical) my mind is numb. I'm exhausted and all I've done is sit at the hospital, hold my child and leave my life to someone else's discretion.

Alan:  Yeah, I know.  I love you.  Keep up the good fight.

Spring:  Thanks well they decided to keep him. They made him npo. They should thank me because he just started retching after they gave him zofran in the OR.  So I vented his g tube before giving him his night meds and I got out 100cc!!!!  All that worry about the insurance company is now gone because he truly needs the IV fluids as "twas foretold" by yours truly...

That means likely tomorrow he will be here overnight again because as I said his tummy doesn't wake up....I don't want to stay tomorrow....

 Stay tuned!