Monday, December 16, 2013

Upcoming Surgeries

As you know, the end of December we have a few surgical happenings in here.  Warren will be getting surgery on Dec. 30th at Rex.  His is outpatient w/ observation.  Meaning, if they need to keep him over night, they will.  Some patients they do, some they don't.  Also, sometimes it depends on just how late the surgeries are running that day.  So many hours to clear them and all that stuff.  So, he will be in one hospital getting surgery and I will be in another with Alyona.

Alyona will be having scoliosis surgery on December 27th.  It is a 6 to 8 hour surgery for her we're being told.  Long day.  Alyona will be having her surgery at Duke.  Her stay is scheduled to be 4 to 5 over nights.  However, last time staff nurses told me the majority of their scoliosis surgical patients don't leave until a week out.

This past week, Alyona had her pre-ops.  One is where they do all the blood work, x-rays, etc.  The other is at the neurodiagnositcs lab and they do testing of the nerves so they have a baseline for surgery.  Guessing so as not to paralyze her and things of that nature.  I will say Duke has a fantastic team.  Just their scheduling department has MUCH to be desired. I can never reach someone when I need to.  Remember me trying to get a hold of someone after her tethered cord surgery?  Other than that though, fantastic teams and they know their stuff.  Anyhow, they did Alyona's work up and sent her home w/ all the necessary stuff and then some.  Also samples of various tapes used so we can figure out how to prevent the next reaction.  So, we're on our way to getting stuff done w/ surgery.  We are going to use the blood bank blood.  Did not have time to bank her blood for surgery. Plus, that one was a new thing for us.  When they call you and say "well didn't the doctor call you?"  Umm, no.  Think I would have remembered that one!  Plus you have to do it 10 days before surgery and the place here told me they ONLY collect on Thursdays.  Even asked if we could go to another lab and they said no, has got to be the red cross one.  So, didn't work out.  Thankful there are donors out there. Please, keep donating.  Haven't been for awhile and I know the next time, I definitely will be going.  Makes you realize the importance of it when you're thrown into it.  My blood will not help Alyona this time but somewhere out there, it will help someone.  And that's my PSA...donate blood when you can please!  It CAN save a life.  (and helps greatly w/ surgeries)

So, busy after Christmas time.  We have friends trying to coordinate a few meals and childcare here and there.  Kids will obviously be out of school then.  Alyona's surgery is on Irina's birthday.  Some things can't be helped.  We want her to feel special. She turns 21.  With so close after Christmas it doesn't always seem that way.  I'm disappointed I won't be able to be with Warren during surgery. But, also know he's in good hands, has rides to and from and will be okay.  Alyona will need a lot of care and support to be sure.  We'll be on the 5th floor again, I'm sure.  We'll be there for New Year's Eve.  Once we get closer to the day, I'll give more details.  Last time, Alyona enjoyed getting the cards and messages.  Duke has it where you Can send quick email messages and they send them to the rooms via form of papers/ cards.  Very nice.  Last time she also received some gifts while there and that lit her up.  Especially, the chocolate.  We would unwrap 1 little candy after each meal as our treat.  Did we ever mention how horrible hospital food was?!  See, last surgery I wrote on Facebook w/ pics.  I didn't write on here much.  Let's face it, focus is on your child unless they're sleeping.  FB was the way to go then.  Not sure how it will be this go around.  We're just going to go with the flow.  No big deal.

Busy getting things lined up.  Trying to remain calm and not panic.  That's key.  We have wonderful friends and family willing to help us out.  Huge blessing to be sure.  More on surgeries later.  I highly doubt Reni will be able to get hers this year.  Stinks b/c due to health care changes (don't even get me started on this!), we will be losing surgical coverage.  It's being cut so will no longer be covered 100% starting in January 2014.  Real hard to bite my tongue but I swore I'd leave politics out of this blog so I am.  Our coverage will not be as it was and for that, I'm disappointed.  Will take time for me to get used to things.  January is almost here.  Guess jumping in both feet first is what has to be done. 

1 comment:

  1. I don't recall if commented on the tape allergy the other time you mentioned it, but I have similar issues.

    Not only do I have adhesive issues, but they are rapidly escalating in both my response to the various things, but also to the reaction itself if something else is even used momentarily.

    I can only use use what are called IV 3000's or Medipore tape or gauze held down by steri-strips (and even steri-strips are getting iffy). You may try asking about those.

    Had to get very creative when I had a PICC, as well as twice weekly IVs that have to stay in until the next is placed - so things they're also REALLY not wanted not covered very, very well. Plus the fact that gauze w/ steri-strips or medipore tape is really risky for being inadvertently yanked or something (and I'm an adult so more careful than most kids are...and also less active in many ways!)

    I'm also now apparently allergic to all skin prep things except for just the alcohol swabs. Can't use betadyne, chloroprep, iodone things, etc. That makes blood cultures, which I get frequently, very tricky as many places won't allow for only alcohol. One time one lab tech in the hospital insisted I ::had:: to use one of the others and when I explained (again) she then used paper towels and soap from the sink and washed my arm that way several times. Every other medical person has thought THAT was ridiculous, but...

    I HIGHLY you suggest you have the tape allergy put into her file absolutely anywhere she sees medical people (and on forms like school stuff, etc.).

    They can (and should) list it in the computer where they put any other known allergies. And if she typically has something with her, I'd put it in a bag or wallet or whatever, in case something happened and you weren't there (and she didn't or couldn't know to insist - or heck, if they didn't believe her), especially if reactions worsen, etc.

    Even as a (fully capable of articulating for myself) grown up AND it being in red on my file in the computer, when I was in the ER not all that long ago, when an IV had to be placed b/c they wouldn't use my existing one, I also made sure I told the nurse what I can (and probably more importantly, CANNOT) use.

    She said it'd only be a minute or so for her to get gauze under the piece of the needle at the insertion site and just wanted to use it for that and while she opened up the IV 3000 (which she could have done on a sterile surface so it was ready to go like most know to do!) I insisted that was NOT ok, but she did it anyway. It really was literally hardly more than a minute, but my reaction lasted for almost 2 weeks - you could see the exact lines of where it was even! It was ridiculous.