My smart-as-a-whip, old-soul, gracious, intuitive, daughter is having surgery this morning.
Not because of an emergency or illness, but she has a mouthful of problems, including 2 grown in wisdom teeth and 2 impacted wisdom teeth which are causing problems of their own, as well as additional problems in various teeth.
Because she was born with a genetic disorder, as was her sister, but Katy is still more vulnerable to it, anesthesia can be a trigger; she had a bad reaction to anesthesia when she had a set of ear tubes put it in when she was little. It triggered her genetic disorder and was an awful experience.
But this has been put off for years and w/o intervention, not only will she lose all of her teeth, but there's quite a bit of infection in there. Not good. My Neurologist is her Neurologist. He consulted with the anesthesiologist who will be part of the surgery. Two dentists and an oral surgeon will also be participating.
It wasn't until late afternoon yesterday I heard from her father when the hospital called him with the final admission detail. Surgery just started here Wed. @ 7:30 a.m. But you could've knocked me over with a feather when he told me it's a 5 HOUR surgery. I panicked. That's an awful long time to be under anesthesia when it can cause bad things.
She'll stay in the hospital tonight. Me and her sister will visit her early this evening. Pain management will be a whole can of worms for days to come. Since the surgery won't be done til midday and it takes a good 24 hours to work it out of your system, I hope and pray they don't 'rush her out the door' in the morning. Recovering from that duration of anesthesia not to mention the pain factor, should warrant an extra night? Right? But probably not without a fight, as usual.
My husband's wife has worked for an oral surgeon for years and knows what to watch for post-op. They've graciously offered to take her home for the next handful of days to help her in her recovery, especially since Ellen know what the inside of mouth should or shouldn't look like, what to do if she spikes a fever, etc. I think it's reasonable to believe she'll have a road ahead of her before her mouth/jaw feels okay again.
Most importantly, I want the same Katy going under anesthesia to arrive out of anesthesia. I can't think of anybody I know of who's had a 5 hour surgery. I was apprehensive about this to begin with, but now I'm just truly scared.
Both of the girls were born with an X-linked genetic disorder, meaning it only comes from the Mom, but I had no idea I had it til I was born. It's called Ornithine Transcarbamylase Deficiency, or OTC for short.
It's a whole nother can of worms and a whole nother journey. In short, the liver has 6 enzymes to breakdown protein, the most important being the OTC; if it's defective or absent, the liver doesn't process protein properly, and turns the by-product into ammonia, which circulates thru your system, poisoning you, particularly your brain, because it has no means of escape.
So they'll need to be monitoring her ammonia levels throughout the day as well. This...the OTC journey...is a story unto itself; if anyone is interested let me know, and I'll either blog it or message you.
But please, send up prayers and healing thoughts for Katy Diehl.
Love to all,
Judy
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JudyJ
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I'm hoping that by now, the worst is over and Katy's surgery went very well and though one would expect that there will probably be some discomfort/pain postoperatively, hopefully it will improve quickly ! Sending you and the girls positive healing prayers . This is certainly stressful for the whole family! Will be looking forward to hearing good news about Katy's progress ! Love and take care , Elise (NY)
Hi Judy I shall be thinking of you ALL and hoping that Katy is safely through her op and managing to get good pain relief. You are obviously an amazing and strong family. I send admiration and many prayers.
Anaesthesia has come a long way. When I had 2 lots two years ago I didn't even feel nauseous and within 30 mins of waking I was allowed to eat! I have to say they did add epidural to one of the ops and more centralised painkilling treatment to my feet when I had those done which reduced the need for so much general anaesthesia. But it shows forward thinking and remember Katy is older now and bigger so she may well be without those earlier issues.In the long run she should feel much better orally and I wish her all the best for it all. Do let us know as we will be wondering.
Dear Judy, That is so distressing to read, what it must be for you and Katy to experience is hard to understand, particularly on a young person, Yes my prayers are for you and Katy and the rest of you family. Hoping she pulls through and strenghtens as she progresses into better health. Kind thoughts Jo and Ron Hewitt
Just a month ago I had major abdominal surgery that lasted 5 hours - unexpectedly. Of course, I am not a youngster but a senior citizen. Having anesthesia for so long actually worked in my favor as all my many aches and pains did not return for many days and my knee pain was 3 weeks in returning. The lengthy incision only hurt for a few days. Let's hope that your daughter has a similar experience.
Whew! Wednesday was one lone nail-biter. Because my physical endurance is so low, I passed the torch to her Father, Jack, and his wife Ellen, to be in charge.
She went under sedation at 7:45 a.m. and wasn't extubated until 4:30 p.m.!!!!!! As each hour passed, my anxiety increased proportionally. Very few have that long of a surgery these days, especially considering this was ORAL surgery.
Tho I knew she had lots of issues, including having to remove 2 grown in wisdom teeth and 2 impacted, as well as a lot of other cavity fillings, etc., I never would've guessed it would take that long. And the sedation was general anesthesia; since they needed room in her mouth, they intubated her thru her nose; didn't know they could do that.
They also has to remove the top back molars on both sides of jaw as well as a lot of other restoration work. When her dad called at 4:15 p.m. to say she was still in the surgery suite, I was fit to be tied. It was the first time he sounded worried.
But the BEST news is she made it thru with flying colors!!!!! What a relief. She was responsive almost right away in Phase 1 recovery, which was a big worry of mine...if/how she'd act post-surgery.
She stayed the night in the hospital and received excellent care. The only unsettling thing, at least for me, is they wanted to draw blood to get an ammonia level and she adamantly refused. It was never done. It would've been an ideal time to get a reading because anesthesia is a big trigger to her underlying genetic disorder, OTC, not to mention the stress to her body due to the surgery. Guess I'm saying it would've given me peace of mind if after all that, it was in normal limits. But Katy has a huge, and I mean huge, needle phobia. Oh, the stories I could tell of the battles over the years. But I don't blame her; she started having numerous blood draws as early as an infant.
Her father and his wife have been caring for her at their home which I truly appreciated. They've been waking her during the night once or twice to keep her on a strict regime for her meds, and trying to stay ahead of the pain. It would've been tough for me on my wobbly body going up/down the stairs to do that.
She's been doing really well. Is eating/drinking, mostly sleeping a lot. Aside from all the nerve endings that must've been pinged during her surgery, can you imagine how sore your jaw would feel forced open after those many hours? Ouch! Poor baby! But she's staying tough.
Sorry for the delay in getting this response, and my thanks, for all of your responses, good wishes, and prayers.
After a comedy of errors-figures-I finally got my C-PAP machine Tuesday, the day before Kate's surgery. I named it Iris. Don't ask me why. But we're having a love-hate relationship, but that's a separate blog altogether.
Thanks again, everyone, for your love and kindness.
Love and prayers continue for you all. Well done Katy, and special well done to you you are a rock and I know you will stay strong because mothers always do Flicka x
Thanks, Flicka. Wow, it's been a trying period of time.
Happy to report that Katy came thru the surgery and after care with flying colors and is well on the mend now.
She has special needs and one of them is an acute Sensory Integration disorder. Has always had it. It does affect all 5 senses for her, but particularly seeing and hearing.
Doing as much digging in her mouth as they did, keeping her jaw forced open for over 6 hours, 4 wisdom teeth and 2 molars removed, AND, she did literally have 80, yes 80 cavities in the teeth remaining, which were all filled, was a huge deal. The front teeth were all done with a cosmetic approach so she has her brilliant smile back, but the back of her mouth looks like railroad tracks. So be it.
The biggest relief is the anesthesia did not trigger her underlying genetic disorder. I was sweating bullets the longer she was intubated (thru her nose; yuk) and sedated.
I might be repeating myself - haven't re-read my previous posts - but the state of her dental health has dogged me and burdened me for years. Both girls in fact. Divorced in '02 when the were tweens. Their father carried their dental insurance. I bugged her numerous times to get them in for routine dental visits/cleaning, but he resisted, seemingly for the sport of it; this is his nature; I'm being fair. But I couldn't understand why he'd allow the lack of dental care to continue.
For the great majority of my post-divorce years, I didn't have 2 nickels to rub together, even in terms of taking them to a low cost clinic. In fact, I didn't even have a working vehicle for a good portion of the post divorce years and where we lived, public transportation sucked. May sound like excuses, but they were the reality. Felt powerless, frustrated, and ultimately as their Mother, it was my responsibility to do what was not possible given the resources I had, which were zip. (Also do not have a supportive family structure to help either; it is what is.) I didn't get on disability until late 2008. Prior to that, we lived, (impossible) on child support, for which after I paid the house payment which was quite reasonable, I had exactly $128 per month to work with. For everything...food, bills, utilities, you name it. My best friend kept our utilities connected all that time for which I paid her back when I got on disability, and tho she never made me feel ashamed for asking, it'd about kill me every 30-60 days when the disconnect notices came in. Got our food at food shelters and finally on food assistance, Thank God. Even lost our garbage service for 9 months during that time cause I couldn't pay the bill and our house became infested with mice. I still have nightmares about it. Felt so guilty about the girls. I had been estranged from my Father for years, but I reached out to him and he helped me get restarted on garbage service. Took weeks and weeks of clandestine, mid-night runs from my house or my garage to the curb because my house/garage were so full of it, and I was too ashamed to do it during daylight when neighbors could see me.
So I cried myself to sleep many nights trying to find a rabbit to pull out of my hat to fix the situation. I was always 'the fixer' and had hit a wall. So I had a lot of misguided guilt and shame going on. It broke my heart as both daughter's complained about tooth aches etc. I'd dial him up and lower myself to close to begging to get them into the damned dentist. Simple enough, right? And he had the insurance and ability to alter his work schedule for these kinds of matters.
When they reached 18, the approached him themselves, but always put himself and newish wife first; they needed dental work done and there was limited coverage; they came first. This went on for 3 years. He could afford to take them on a week long Carribean cruise, and numerous other things; he does well for himself. But something as basic yet important as regular dental care? Guess it wasn't as exciting to him.
Do I sound full of sour grapes? Perhaps, but I'm working on it. It was the only time in my life, from the early -to-mid 2,000's that I began to feel powerless and hopeless. Hope is everything and it was the first time I experienced not having it. Very damaging stuff.
So back to Katy's sensory integration disorder....she certainly failed in personal hygiene when it came to proper care of her teeth/gums. But was it really a failure? I don't think so. The volume of sound in the mouth is amplified several times over and she couldn't tolerate the noise. Seriously. Even tried ear protection while brushing, etc. but it was ineffective. And am I to be charged with a crime for not standing next to her 2 or 3 times a day to make sure she brushed/flossed? He seems to think so. Worked when she/they were younger, not so much as they got older. And, stands to reason if anyone goes about 10 years w/o routine care, you're going to have a mouthful of problems.
I almost burst out laughing when he told me..."And do you know what the oral surgeon said caused all of this? SUGAR!" To which I replied, "My guess is lack of routine care probably trumps the sugar theory.". Duh. The natural consequence of what I consider pure neglect of dental care over 10 years, is what happened with Katy.
I pointed out to him, our other daughter Melissa, who's also been begging him to use his dental coverage the past 3 years, MUST be next, and before she goes back to school in the fall. She has talked of holes in her teeth for years.
Katy's surgery a lone cost 15-20K, out-of-pocket. He's made it clear he expects me to reimburse him an undetermined amount when the house sells and I have a few dollars in my pocket. The gall. I've made it clear I need every $ from the sale of the house (he has no interest in it, legally) to plan for myself going forward. It will not be a great sum of profit. One of the 1st things I WILL do as advised several times by my Doc and Attorney, is to pre-arrange and buy a funeral. And set money aside for services that may not be covered by insurance of governmental assistance. He just bought a new car, house, and is planning a cruise to the Orient. It just befuddles me, people, and how they think sometimes. I may have a small pot of $'s coming my way when the house sells, but every $ is accounted for. So for him to feel 'cheated' in anyway, given all the evidence to the contrary, is, well, there are no words.
Soooo.....my point....or one of them, at least in my experience, is what should be simple, a no-brainer, too much of the time turns into a tedious, complicated, protracted, mess, and the source of much angst. And as with a lot of situations, the common denominator reduces down to ONE person, whoever it may be, that can make a profoundly positive effect on others lives should they choose to set their own 'stuff aside'. Most of all, tho, is I know that resentment is picking my own poison and especially now has no place in my life and is counter-intuitive to stabilizing and being more healthy and spiritual. It sure would help if I were not continuing to be provoked. Have not time for those people in my life either. But rather unavoidable when they're there by role. Believe me, I've tried.
So, Katy's recent surgery was preceded by about 10 years of worry, concern, frustration, misguided guilt and shame. Seems not much can be simple, or at least more manageable.
I'm truly over-joyed with this success, her terrific attitude about doing all the after-care to the nth degree, and came thru it with a minimum of suffering. Whew...time to start letting this one go...100 pounds lighter.
Particularly after this post...if you managed to read the whole darned thing. Guess because of it's magnitude and it's duration, needed to get it out there for a jump-start for closure. But....in the process, sure am making myself transparent, eh???
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Farewell My lovely
Another Downturn for my sister
My lovely Mum
