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Pre-OP Appointment (Noah 02.03.2011)

2/3/2011

5 Comments

 
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Today was my pre-op appointment, today was my day to meet with my surgeon and preanesthesia testing.  I was scheduled for 11am for the surgeon visit and 1pm for the anesthesia stuff.  I left my house a little over 2 hrs prior to ensure I got there on time and had time to sign whatever they needed if they needed anything.  When I arrived (which was about 10-15 mins early) I was told the Dr's were running a minimum 30 mins to 1 hr behind.  I decided not to get in a huff about this as this is just how things go (petty often in this place but oh well).  So I told the guy registering me that I would wait outside, as there was no seating and I'm not interested in breathing everyone's sickly cough for the next 30+ mins.  He advised me that if they call my name and I don't hear it I would miss my appointment, so I advised him that I will be outside if they need me and I walked away.  I got fairly irritated, not because they were off schedule but because it was made my problem and in essence tossed back in my face (if I don't do this or that, it will be my fault) and the bottom line is I'm on time and ready for them, they're not, so they are the ones who in my opinion needed to be understanding...and besides, all I was simply doing is stepping outside.  Needless to say about 35-45 mins later they called me back (and yes I was outside that whole time).

I made my way back to be introduced to the adult liver transplant surgeon whom will be doing my operation, his name is Dr. Clark Bonham.  He came off as a relatively young guy (maybe in his early 40's at most).  He asked me if I had any questions and honestly I had a few but nothing too major.  I simply asked how long the operation he thought it would take and expected stay in the hospital.  He said the operation would be anywhere from 4-6 hrs for me and projected stay is 5-10 days.  He went over my risks, a bunch of %'s for this and that.  He advised me on where the scare would be and a little breakdown on how the operation goes.  I felt compelled to drill more questions at him but really didn't have all that much to ask, as it really doesn't matter in the end.  They can tell me this might happen or that might happen and the bottom line is everyone is different; some have great outcomes, some have good outcomes, and others have bad ones.  He told some brief bad ones and it really didn't mean much to me...it just doesn't matter at this point.  He also like everyone else thus far asked me, "You sure you want to do this?", I don't know what it is with this place but its almost like these people all have a script to read off the same jargon.  I can only think its for legal reasons they ask this but its a bit frustrating as well, so rather than answering the question I restated one back to him, I asked, "are you a father Dr?  Do you have any kids of your own?".  I didn't say anymore, I awaited his response.  His response was, "I'm a father of 5......and I would do the same".  Its good to know we are all on the same page, just odd how they keep asking it to me.  Maybe next time I should retort with, "are you asking me if I'm not man enough to follow through with this and instead watch my son suffer and die, take a guess at where I stand on this matter for the 50th time", maybe that would be a better response...maybe I'll save it for next time someone asks me that question.  My appointment was over, it was time for Preanesthesia check-in.

I made my way to the second floor, through some long hallways, past the "Surgery Waiting Area" and the big monitors that show who is in vs. who is out of surgery.  I had a horrible sinking feeling in my stomach, those people I was just looking at will be my wife and family in a just a few days...I got choked up and pretty shaken to be totally honest.  None of this is fair, I hate that she has to go through this (will she be alone?  No, but I won't get to be there to hold her hand, give her a kiss, and just at minimum comfort her). Then of course I pondered my absence as well...WHY, WHY is all this happening, why can't we just be a normal family and have a normal life?  I made my way into this somewhat dark and desolate part of the hospital, it was beyond dreary, cold, and just smelled odd too.  I just realized this is where I check in for surgery in a few days, it all makes sense why it smells/feels the way it does.  I was taken back to a "Preanesthesia" Dr. whom listened to my heart, my lungs, and asked if I was allergic to anything.  He pried into my medical past at bit, asking about my ER trip for Atrial Fibrillation/PVC incident about 9-10 years ago...I began to worry as he mentioned that I might go into A-fib again as I come out of surgery (due to the stress of surgery) and then I just realized, it is what it is, every doctor has said its not life threatening and I assume he would say the same.  He indeed agreed, just reminded me that I may have some complications but not to worry about it and everything should be ok.  That was it and I was done, or so I thought.  He advised me that I needed to do blood work again...So off I went to have more testing done, which was quick and pretty painless; whats another needle poke amongst strangers.  We're all shooting for a common goal, which is set for me to be at this same place on Monday morning at 5:30am.

I can't help but be frustrated with everything, feel sad, and worry about all of this.  Does this mean I think I'm going to die, or Dylan's surgery won't go as planned/hoped?  No, it sure doesn't but when you're stringed around all over the place, told not so great stuff mixed in with it "should" all go well, one has nothing to do but think.......and thinking, and thinking, and thinking some more seems pretty normal to me at this point I would say.  Or am I suppose to be a mindless robot and not listen to my heart, my feelings, my fears?  Should I pretend like I don't need to plan for the worst and hope for the best?  All this stuff is hard and the word hard doesn't accurately describe what's going on in my head at every passing moment (which is ticking away so quickly).  Isn't it only fair that I be true to what is in front of me?  And that what is.....is very real, very scary, and very much permanent either way it ends up going. 
 
-Noah

5 Comments
Lisa Glaser link
2/3/2011 10:13:13 pm

Hi Noah, Amber, & Dylan, My name is Lisa Glaser & my daughter Kylee also has BA. Amber, I belong to liver families also under username cjglke. We've been thru some of the same paths as you guys. Kylee is 19 months & just had her liver transplant this past October. I went thru all the testing & was approved to be a living donor for her as well. We agreed to list her & if she didn't get "the call" within a few months we were going to go ahead with me being her donor. She had also had a GI bleed, although not quite as serious as Dylan's was. We were fortunate to get the call within 3 weeks of her being listed so we accepted & proceeded with that route. I wanted to let you know I experienced all the same feelings as you've described & know how scary it is. Please know I will be thinking of your family on Monday & will be saying lots of prayers for everything to go well. Post transplant life has had it's bumps for us but overall is much better than pretransplant. If you need anything at all or need someone to visit with, please let me know. I'm sure you have lots of friends & family supporting but also know there are lots of other liver families out there who will be supporting you as well. Sending lots of prayers & hugs to your family. Lisa, Cory, & Kylee Glaser http://www.caringbridge.org/visit/kyleeglaser

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Jen Guffey link
2/4/2011 04:22:28 am

You write very honestly. I hope you can find peace in the next few days. I can't imagine how the weekend is going to be. But I know you have many reasons to be excited (easy for me to say,right?). Monday is a new start for your entire family. Altough you may not be there holding Amber's hand, you are saving her world. Just think, it's a few hours out of your life, but a whole new wonderful life for you all! We all will be praying feverishly until we get the update you and Dylan are doing steller! God bless you all! You are our heros!

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Dawn Petersen
2/4/2011 04:48:02 am

Noah, Amber and precious Dylan, I saw the article in the PD which took me to your website. In reading both the article in the PD and your journal entries, I have to say that you are such brave people. Everything I have read has brought tears to my eyes and has made me realize how unfair life is sometimes. No child deserves to go thru what your precious boy has had to endure. Noah you are doing exactly what any parent would do for their child and you deserve to be frustrated and angry sometimes. Anyone who tells you different has no idea what you are going thru. You all sound like an amazing family and I for one, will be praying for you all this weekend as well as Monday. I hope that Amber will know how many people will be thinking of her 2 men this Monday while she is waiting for you both to come out of surgery. I will be checking the website daily for updates!! God Bless all of you!

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Zak West
2/4/2011 10:14:18 am

Noah, You wouldnt be human if you didnt feel the way you are right now. As for the A-Fib, it at least is a common procedure, and recurrences are very common. I work with a company that has a very new and novel technology in the A-Fib space. I hope it doesnt come to it, but if you need it, we will be able to cure your A-Fib very soon with a low chance of recurrence. Stay strong.

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Noah
2/5/2011 05:39:26 pm

Thank you all for taking the time to express yourselves, we really appreciate that Dylan's story reaches others, even those whom share similar lives. Keep our little guy in your thoughts, we all need it so much right now -Noah

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