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Tuesday, March 24, 2015

A Crystal Ball

So many mixed feelings and thoughts are going through my head. What's the right thing to do--I know there is not really a right or a wrong way to go--just which one is the better for Ian and our family. Our goal - quality of life -the standard of health, comfort, and happiness experienced by an individual or group - are the things needed for a good quality of life. We all know quality of life can get modified depending on the individual or group as well as the situation. 

There are pros and cons which ever way we go. To do the surgery - to not do the surgery? We already know Ian is in pain and uncomfortable - we know some days are better then others. Sometimes it is as easy as repositioning him - making sure pillows are in just that right spot - but we maybe doing this every 5 minutes. Sometimes it requires giving him extra doses of medicine - which can make him a little loopy and tired while other times it will just take the edge off, requiring anothe dose. We know eventually he maybe drugged up but don't feel now is that time. Sometimes we handle all of this well while other times we get very frustrated with the situation and with Ian (even though we know its not his fault).

The surgery, oh the surgery - the goal is for his back pain to be minimal if not gone. However, the issue is getting to that point - the actual surgery, the recovery, the wound, etc. - all painful. Yesterday was a world wind of information - trying to take it all in was hard. The surgery will be between 6-8 hours. Ian will lose a large amount of blood and need a transfusion. He will have an incision from neck to butt - a nice wound we need to make sure does not get infected. The hospital stay will be 7-10 days with major pain - one doctor told us that pain will be the major challenge because we will be trying to manage acute pain and chronic pain - UGH. We know Ian will be on some tube feeding in the hospital - as we know when we don't feel good we don't want to eat. Actually, we have started him on 1-2 bottles of pediasure for the week as nutrition is an important part of the healing process -,wound healing as well. There are quite a few other things which we will need to do towards the end of the week and over the weekend. I'll spare you all those details. The end result a pain free back for Ian.

Not to do the surgery - contained pain in Ian's back. Increased pain medicine to try to control it as best as possible. Repositioning him numerous times as he has a hard time getting comfortable in bed - many pillows, towels, what ever we can figure out to get there. 

What's the answer. A crystal ball would be such a nice thing to have to know the outcome of both choices. IF ONLY!

3 comments:

Michal Katz Wasserman said...

Marci, what a difficult decision you are facing. I wish we could help you with it, or spare you the necessity altogether. What does Ian think of his options? What does he want?

Marci Scher said...

Before our appointment he wanted it. Afterwards he said he didn't know and wanted mommy and daddy to make the decision.

Marci Scher said...

Heather Schmidt Young I know this such a difficult choice, but I also know you will make the right one for Ian and your family. *hugs*

Jay Caplan My thoughts and prayers are with your family. Please post when everything goes well!

Erika Agetstein Buchdahl No easy answer. Just stay strong and know you have support for whatever your decision is. Hugs.

Stephanie Rabinowitz ❤❤❤

Ezra Aaron Buchdahl Prayers whatever u decide

Sherri Asher I am sorry, but just know whatever you all decide will be the correct course of action!! You all are in my prayers, for Ian I wish a pain free night and days to come!

Daean Menke Let me know if you want to talk.

Kendra Bober (((Marci and family)))

Alison E Pascucci Love you friend. I'll call you tomorrow. 💜

Gina Cohen When you find that crystal ball, can I borrow it? Sending all of you love & strength ♡♡♡

Karen Unger Frazier Wish I had an answer. I hate that he is suffering! I hate that you have to make this choice! I 💘 all of you! I also drank one of your smoothies today. Lol bringing them tomorrow so I don't drink it!

Susan Ritmiller What does Ian think? Surgery or not?

Michelle Bar-av Love you all

Michelle Kampler Schwartz Just keep thinking it through, letting the thoughts ebb and flow like waves. Eventually you and Brian will reach a comfort zone.

Jodi Postol We are all here for you. Keep the communication open and you will make the best decision for Ian.

Melody Ballan Cooper Whatever you do it will be better for Ian and the rest of you.

Monique Erdos-Gertner Ian's thoughts? Drs thoughts?

Leslie Kapper Sands Whatever you two do for Ian will be the right choice. You have always done right by him so whatever you choose will still be the right decision.
March 25, 2015 at 6:39am · Like
Jennifer Paradise Baker
Jennifer Paradise Baker You amaze me with your ability to cope with these difficult decisions, I am sure you will choose the best for Ian!

Marci Weinberg Scher For those who have asked, before the appointment Ian said he wanted the surgery after the appointment he said he does not know and wants Brian and I to make the decision.

Michael Kiewe You guys are great parents and will do what you two feel is the best

Stacey Wright Martin Whatever you and Brian decide will be the right choice! Nobody wants to see our babies in pain! Prayers and hugs!!!

Danielle Houseal When do you have to decide by? Sometimes just a few days can help give a little perspective and tip the scale in one way or the other. Maybe we can walk and talk it out in the next couple of days (can't tonight but could do tomorrow or Friday).

Carrie Levin Weitzman Tough decision. Sending hugs and support! One question...do you know if the pain is solely related to the scoliosis or if it could be part of the SMA?

Jennifer Larsen Orlando I know this is such a difficult decision for you all. Sending prayers and hugs!

Marlene Ettlin Thinking of all of you. 💜💜

Samantha Gitli Schaefer Such a difficult decision, but one you will all make with love and comfort in mind. I wish I had a crystal ball to lend you. Hugs to all of you!

Julie Onnembo Sending you all lots of hugs and prayers.

Irene Summers Gordon Gellar Whichever decision you make will be a wise one, as have all your choices so far!

Michelle Levine Davis Sending hugs!