Yeah, Saucie and I were wondering about it. I want the news to be good!

I don't know him, but worry about him anyway.

I don't want to post anything I shouldn't so maybe he will chime in with an update, but I know they are so focused on this that I certainly wouldn't think he would have time to come on here unless they're just in a sit around and wait situation.

But I will pass on a little of what he posted on Facebook and that is that they weren't able to do the surgery yesterday. They had him all prepped and even under anesthesia when his oxygen levels dropped and the anesthesiologist called it off. They did some CTs (he was still under the anesthesia) and they didn't pinpoint the problem. No update yet on what the next step is. Don't know when it is rescheduled for, if they will keep him in the hospital or what. It's just really a sickening thought that he had to eventually wake up to find out nothing had been done after months of preparing for such a major operation.

I feel so badly. It's been a long haul just to get to this point and I know that the medication keeping the seizures under control is pretty much incapacitating him. They have a good family and the siblings are all really close, with no animosity between the ones who have left the church and the ones who have not. Please just keep them in your thoughts.

Just for fun, here's a little taste of who we're talking about (the patient). Certainly one of the most interesting and talented exmos out there:

https://www.google.com/search?q=ian+tweedy+exhibition&tbm=isch&tbo=u&source=univ&sa=X&ved=0ahUKEwjPwZ_OkfbPAhWrx4MKHUJxCR8QsAQIJg&biw=1680&bih=944#q=ian%20tweedy%20exhibition&tbm=isch&tbs=rimg%3ACX6D4tNtDoHEIjh_1GTXNJ7UB_1AxfsWVgyGB92msBBDFA2RNraWPYKzFdr23LLjJv2VPqJf8cXymhK_1Eqx6ofXK9r8CoSCX8ZNc0ntQH8ET3ZHp0Hs1b1KhIJDF-xZWDIYH0RIT-ttmlisjgqEgnaawEEMUDZExE92R6dB7NW9SoSCWtpY9grMV2vET_12eVG4XXLFKhIJbcsuMm_1ZU-oRPdkenQezVvUqEgkl_1xxfKaEr8REBNJO5anVQWyoSCSrHqh9cr2vwEQE0k7lqdVBb



Edited 2 time(s). Last edit at 10/25/2016 10:29AM by NormaRae.

It's good the doctors were able to err on the side of caution.

With oxygen dropping before they'd begun, it was a good call on their part.

That in itself is a positive outcome.

Yes, it is. It's too delicate to take any unnecessary risks. During part of the surgery they will actually have him awake and drawing as they touch certain parts of the brain to see how much of the tumor they can take out without affecting more of his movement than they have to. He's lucky to have had some of the best doctors in the country take him under their wing.

A kind of funny story about people you meet on RFM. About 7 or 8 years ago, Cludgie came onto the RFM scene and was talking about living in military wards. When he mentioned Okinawa, I asked him when he had been in the Okinawa serviceman's ward. He told me the dates and I said, "Ok, send me a message off board and tell me who you are, because if you were very active, we have to know each other. My (ex)husband and I were in that ward and very active for a couple years in the late 70s.

I just laughed when he told me who he was. I remembered them well. I remembered that his wife was so pretty and they had the cutest kids, one little red-haired boy who I had in the nursery I especially remembered. He even painted a car for us that we shipped back to the US. We've been RFM-email-facebook friends ever since and have met up at a couple of exmo conferences.

I've also run into family members, people from my childhood ward and people I worked with in Utah from being on this board for so long. It's funny cause it takes someone saying the right thing for you to wonder "do I know that person?" It's especially funny when it's the last person you thought you'd ever meet here and when they tell you that you're the last person they ever thought they'd meet here. Don't tell me TSCC isn't quietly imploding.

My birth son served in the Marines on Okinawa for several years. He is a RM who went A-wall after his mission, and perhaps during his military service. He was there in the early 2000's, so after your time there.



Edited 1 time(s). Last edit at 10/25/2016 11:48AM by Amyjo.

Children in peril is a parent's worst time. I don't want to jack this, because it's about our good thoughts and vibes for them. It's just so sad when a child you cherish and love so dearly hurts. I have a child who was forever changed by an accident in 1999. She is still my only daughter. Still cherish her. Tears. Please know they are going through indescribable pain. Any of you who know them personally, please give your best love. Tell them I (who they don't know and am just a fellow travler) love them! Thank you...truly

You are so right. There is nothing worse. And it's certainly not easier when they are adults. You just wish you could trade them places and all you can do is watch them struggle and give them love and support. Love to all of the supportive parents here.

What a nightmare for the parents! My heart goes out to them. I'm sending thoughts and prayers - not that any of it helps anything for certain -- but it would help me in that situation to know that others were with me in though if not physically present.

Sometimes nothing really helps, but the skill of an anesthesiologist can mean the difference between a chance at life and certain death. He at least has a skilled anesthesiologist.

Any more news on Cludgies son?

Maybe he will update us. Cludgie?

Updating you as asked:

I appreciate your interest and your good wishes. I'm back at work rather unwillingly today, having come back a bit early. This whole thing has made me want to find a tight hole to crawl into and hide from the world. I want it to end, but the trouble has actually only been extended.

NormaRae did a good job of updating you, and I really can't expand much beyond that, except to say that his surgery has been re-scheduled for Dec. 7. So we will have to re-do this whole thing--buy new tickets to fly up to NYC, and find someone to watch the house and feed the cat. That will be the hardest part. I am actually thinking about kenneling him, knowing he will not be the same after that experience. And besides, last I checked, the only cat kennel in town has a 2-month wait list.

As NormaRae said, Ian's surgery was called off after he was already under anesthesia and had his head screwed into the cage they use for immobilizing the patient. After putting him in ICU, they ran batteries of tests, and found nothing wrong, and that it may have been a mistake on the part of the anesthesia team. Still, to reschedule a brain surgery theatre, plus wrangling the team of 20 or so individuals, takes a bit of time.

I was disappointed that the staff seemed so flippant about the whole thing, obviously not caring about the logistical difficulties and costs on our part. That makes me angry. And worse, they chose to leave my son on anesthesia unnecessarily for 24 hours, despite our pleas to wake him, since all the tests were complete. He woke up 24 hours later and believed for a while that he had had surgery, which was a cruel joke. The ICU people exclaimed, "You almost died!" It was unprofessional and also not true. ICU had told us to be there at 8am when they planned to wake him. The doctor said he would be there to explain to my son what happened. But when we got there, they had already woken him at 5am; the doctor didn't show until 3:30 pm. We were pretty hostile by that time.

Anyway, it is what it is now. We have only the one choice.

Oh, Cludgie, this all makes me so ill. I didn't know what the status was the past week. I wish there were words. If there are, I don't know them. What a hard month it's going to be until then and even then, I just cringe to think y'all, especially your son, has to prepare for Take 2.

Yes, you only have one choice. I won't say "hang in there," because, of course, you don't have any choice but to do that. Just know that so many people are thinking of you and care about what y'all are having to go through. Try to stay as positive as possible, knowing that a recovery is likely, when you didn't know for awhile if that was even a possibility. Take care of yourself so you can be there for him.

Has the bishop even asked y'all if you need anything?

I can't imagine if someone in my small church had something like this going on and needed something as simple as someone to take care of the house and the cat for a few weeks. Even if they have been a member for years and no one has ever met their spouse. Doesn't matter. We'd be all over it and trust me, we'd do whatever we had to do to take care of it. There would be no, "well I'm not their home/visiting teacher so it's not my problem."

Your wife being the RS President, does nothing but give of herself and her time to the ward. If they haven't come over to see what they need to do for her now, she needs to go to them and say, "look. My RS position is the thing I spend the most time on in my daily life. I do everything I can do. Now I need help from you and this is what I need. What can you do to help me work it out?" Where are her counselors? Where are her ward/visiting teachers? What would it take to get people to go over a couple times a day and feed, check on the cat? Wouldn't that be so much better than kenneling him? And shouldn't they WANT to be doing something to help?

Well, no one's offered to help but them goddamned Unitarians. One of them put his arm around me today in the cafeteria and offered help. But hey, who are they to help others in need when we have the One True Church at our disposal? Anyway, Will wants to ask the pastor if she knows anyone in my neighborhood who can help. So far, no word from the godless, uncircumcised Philistine Mormons.

I hope they can find some people who can help. So do the mormons even know that the R.S. Pres is going through this? I'm pretty sure their lack of interest is because she has an apostate husband. That makes her good enough to give of herself to them, but not quite good enough for them to give anything back to her.

My apostate status may play a factor. I'm not sure. Once, however, the missionaries came by in the winter and I fed them hot food and we talked for an hour. They seemed pretty happy. I told them they could come back anytime they needed to, like if it was too cold, they needed food, the needed the toilet, the Internet, or just a place to hang out for a while. They never came back again. The local sister missionaries used to annoy us frequently by wanting to unexpectedly give us a "message" at 8pm, but I haven't seen them in a good long while, either. I could now be on some list or something. It could also be my wife telling them to beware. She knows that if we get to talking religion, I won't pull punches and could hurt fragile testimonies.

Such a lack of empathy and understanding it sounds like from the medical team. That IS HORRIBLE.

I wish I was closer. I'd take your cat for you. The last thing we need in circumstances like this is to worry about our pets.

I can't begin to imagine trying to WORK.

Positive (although minor) news for a change: The cat kennel in town had one opening for the time I needed. It's expensive, but at least I have something if no one steps up to help out during that time. I really love my cat, see. I've got to take care of him.

I am so sad to hear about the ongoing difficulties with the hospital/surgical team. Many hospitals have an employee whose job it is to help people resolve problems with staff --- if you haven't checked, it can at least help to lessen the chances that staff will be that rudely inconsiderate to you again.

Best wishes!

Actually, moments ago I got a forwarded E-mail from the nurse practitioner to my son's surgeon, the neurosurgery chair. My son had stated some disappointment in the way it was all handled, and she scolded him for it. While the scolding was mild, she was clearly not pleased that any of us were displeased.

cludgie: I am so sorry to read of your situation and your son's. I always think that people are so brave to go through what they face at times like this. I know there's not much choice but patients are so courageous. I'm very squeamish and also terribly claustrophobic. If anybody pinned me down they'd have to sedate me.

Thinking of you, your family, and your son through your most difficult time. I appreciate all your updates and the thoughtful and compassionate replies from the good folks here.

The comments are correct - I checked out your son's artwork and it's brilliant.

I am shocked and appalled to read about the nurse practitioner's reaction to your son. Even if he was being unreasonable, which he was not, you'd hope a skilled medical person would not end up telling a patient off. Like he needs that on top of the trial he's already been through. Like it would help the situation. Like it doesn't add to the heavy burden. Like you're gonna feel like speaking up again, trying to communicate with the medical team. (Oh wait, I can't imagine you NOT speaking up so cancel that last thought).

I'm glad you found a possible place for your cat. That's important too, or you wouldn't be able to put all your energy into the next trip and all that entails.

For what a stranger's best wishes are worth, you all have all of mine. Your son sounds like a fighter (wonder where he gets that from). And medicine really is full of "miracles" these days. Too, I second the comment above that the anesthetist is the star of the (medical) show. It must have been a difficult decision for him to call things off at that juncture but it sounds like the right choice, from a medical/safety point of view. Most unfortunate for your son though. However, everybody, even the Surgeon God has to listen to the guy wielding the anesthetic.

All the best in the coming weeks and beyond. And here's hoping the locals (whoever they may be) come up with some really helpful assistance for you while you have to wait, and then when you have to be away. And don't forget to take care of yourselves too, you and your wife. Get lots of rest if possible, eat well, preserve your strength. Put your energy into the really important fights.

There is no room for "scolding" the patient. What the &*)& is wrong with those people????

But with a little searching you might be able to find it.

In addition to the costs for Cludgie's son that aren't covered by insurance, the family had enormous expenses traveling to NY and staying in hotels all for naught. And they'll have to do it again next month.

Please search for his account and make a contribution.

You can search the sponsor, Lauren Marinaro and Ian.



Edited 1 time(s). Last edit at 11/05/2016 12:13AM by auntsukey.

Cludgie, I'm sorry that your son's surgery was delayed. I think that sometimes what medical personnel forget that what are normal workaday and scheduling problems for them are life-and-death issues for our beloved family members. Sometimes you have to give them a reality check when they get a little too cavalier, and that is what patient/family advocates are for.

I used to live in NYC, so I know how ridiculously expensive it is. You might check with Air B and B. My family uses that when traveling to NYC because it is much less expensive than booking a hotel.

You also might consider checking with Catholic Charities and seeing if they can do anything to help you and your family.

Best wishes to you all. I know the wait is tough.