Unpleasant Memories
 

I've been fairly quiet here the past few days. It seems that my 22 year old son, who has already not had the most auspicious year on record, was suddenly stricken by the failure of his 12-year-old ventriculo-peritoneal shunt, which prevents the benign brain tumor deep inside one of his ventricles from causing him to develop hydrocephalus.

He was complaining of headaches on Tuesday all day, and so I took him to the ER Tuesday night at about 8:30. We were there until 1:30 AM Wednesday, and left for home in a blinding snowstorm, our first really nasty winter weather this season. He was CAT scanned at that time, and given some pain medication.

Wednesday was spent with me back at work on 3 hours of sleep for a nine hour desk shift, while my ex (his mother) ran down past images from three different sources so that comparisons with the ER scans could be made. We met at the neurosurgeon's office, where the doctor quickly noted enlargement in his ventricles as compared to an MRI done in July. This could only mean one thing, and so Steve was scheduled for evening surgery on Thursday to do a shunt revision.

The surgery didn't actually start until 12:00 AM this morning, Friday, and I didn't hit bed (or rather, couch, as I didn't want to get in my comfy bed...I'd have never been able to get out of it) until 3:30 AM, again going to work at my usual 8:00 AM time. At 1:00, I got a phone call from my wife, who had gone to visit him, telling me that he had experienced a grand mal seizure, and he was uncommunicative. I zipped to the hospital, and found him somewhat improved, although still not terribly whippy. At this writing, he is badly nauseated, and cannot keep anything down. His head hurts (to be expected), and the pain meds and anti-nausea drugs are keeping him rather whacked. Prognosis at present is unknown, although he was able to speak in complete sentences before I left to come home, leaving his mother to spend the night with him in his room. I take the shift tomorrow afternoon and will stay on into Sunday AM.

Although I can only begin to imagine the fear my son must be experiencing, all of this is also terribly difficult for me. 12 years ago, I almost lost my then ten-year-old son due to complications from his original shunt installation. The closed head brain injury he suffered robbed him of his short term memory, his high IQ, much of his verbal skill and vocal control, leaving him today, at age 22, a marginally employed busboy with a seizure disorder whose major source of income is Social Security Disability. He is in hosptial only thanks to Missouri Medicaid.

The experiences of 1991/1992 are still very fresh in my mind. It was the most horrific period of my entire life, wherein my whole life came unravelled. My son nearly died, and was hospitalized in largely paralyzed condition for a total of 10 months. During that time, my wife left me, my finances were shattered, and I spent the biggest part of a year either working or sitting by my child's bedside in one of four different hospitals (one of which was a four hour drive from our home). It was a time when I seriously considered suicide, but chose abject alcoholism instead. It was a time of panic attacks, severe self doubt, and alternating pejorations of the deities with earnest prayer and sincere offers to the Fates to allow me to trade places with my child. I literally offered up my soul to any entity that would accept it in exchange for his survival and recovery.

The events of the past few days are dredging up old memories, old feelings, old fears. I can only hope that the supportive wife I am now fortunate to have, and the lessons learned over a decade ago, will carry me through this. I can only hope that my son walks from the hospital with at least the major part of what he walked in with still accessible and functional in his brain and personality. I hope I still have the strength to be there for him, to make sure the doctors and nurses communicate effectively, and that they don't try to give him the wrong drugs at the wrong times, etc, etc, as they tried to do many times during his original episode. I can only hope, and ask my gods and goddesses to smile down upon him.

It is going to snow again tonight, silence falling from above, hushing the world, covering that which is brown and dead with a glorious mantle of shining white.

May blessings and strength fall this night upon my son and my family in equal abundance.

Here's a picture of my son...please send good vibes.

I'll light a candle and say a prayer Elspode.

Dagney

Aw man. good thoughts sailing south to you all.

My thoughts and prayers are with you all, El.

Of course, Els. We are family.

We wish you and your the best .

I commend you one the trmendous inner strength evident in your post. Good thoughts and energy are on their way from the north.

Every last good vibe I can find is headed your way now...

Els, I am moved greatly by your strength and unconditional love for your son. I pray for you continued strength and for your son a peaceful recovery.

We'll pray for all of you, Elspode.

Good vibes are coming from me, too, man.

I pray to the Gods that your son recovers and continues to delight you for many years to come.

Brian
-

Thanks to all...I'm off to hospital shortly. Another seizure this morning, and he should be in a followup CAT scan very soon.

Six inches of snow on the ground and still falling...

Sending good vibes your way. (no, I don't know you; but it is a compelling story.) It's sad that you and your wife couldn't stay together and handle this as a team.

Our son has a high-functioning form of Autism. It is a challenge. But, my husband and I deal with it as a team. It helps.

May the force be with you.

My prayers are with you guys.

Ep, I know it's been a rough year for you. Be strong, stay positive and use your past to guide you along the "right" path in the present.

Your family will be in my thoughts and prayers.

my thoughts and prayers are with you and your son, el. i hope only for the best.

Sending as many positive vibes as i can el, Its clear to see your son is loved dearly by both you and your ex wife.

best wishes

God Bless you and your son.

I look at my four-year old son and my three-year old daughter and cannot imagine carrying the burden that you now bear.

Thank you for including us in your thoughts and sharing this story - you and your son are very much in each of our thoughts as we offer up prayers, hope and goodwill to your family.

Please post progress reports as often as you are able to - I have a good feeling that you and your son will be sharing many more joyous Christmases together!

Thinking good and healing thoughts for you both....

The Briefest of Updates
 

I spent the whole weekend in his room with him. He's not doing very well, but the doctors are not worried. It is assumed to be normal to have several days to several weeks adjustment after a shunt revision.

His behavior and expressed pain experience are rather unsettling for me, though. His congnition is extremely poor. Truth be known, this is really, really difficult. I'm frightened at the thought that he might not come out of this as well as he went in. He cannot afford to lose much more of what he had going for him cognition and memory-wise.

I'm told not to panic yet, and I'm not, but no one said I couldn't be frightened and worried.

Hang in there. I'm glad you can be there with him during this.

This sucks, spode. I can't imagine how helpless you feel. The seemingly random affliction like Steve has does not seem fair. I am sure that you may rely on the positive energy of all the people that have taken the time to read your post about the situation he's in, even if some don't feel comfortable in expressing it because they may not know you, or whatever. I have never been in a situation like you're in, and hope I never am, so any advice i might offer is a bit empty. That said, however, I would offer one little thing:

Try to take from this whatever positive you can find. I firmly believe things happen for reasons. The pain he suffers must have an equal and oppisite flipside .....somewhere........ I hope you can find it.

Ljim

'Spode, both you and your son will be in my thoughts... if there's anything you need along with all the positive energy that I can manage to scape up, just say the word.

Brief Update Update
 

Almost as soon as I finished typing the last entry, my ex called from the hospital, saying "I think there's someone here you'd like to talk to."

It was my kid, sounding much the same as usual. It seems the doctor, following a CAT scan this AM, decided that the shunt was set to allow too much pressure in his head, and so he tapped it (read: stuck a giant fucking needle into his shunt assembly and sucked some cerebrospinal fluid out of his head), and then reset the shunt pressure (a new design which allows different pressures to be set via magnetic induction, externally).

Steve slept for two or three hours, woke up hungry and communicative. I wept...

Now, if we don't end up with a problem from *too little* pressure (this can be equally devastating, and was what caused his original brain injury in the first place, actually), things are looking up!

Thanks again for all the good vibes. I know in my heart it makes a difference!

that is OUTSTANDING news!!:D everything will turn out fine, elspode. i can relate to the worry, pain, and sense of helplessness. my dad had 2 major surgeries back to back a year ago last june. he had us all worried. once again, congrats!!

hear that, spode? cougar has a heart-on for you!

Nah, its for my kid...he is a looker, that guy.

As of 5:30 this evening, all is still well. Keep up the vibes. I'm home catching up on email, laundry, and soon, sleep.

:D :D :beer: :thumb: :beer: :D :D

Good to hear the GREAT news, Els.:) Hope all the good vibes continue your way so you and your son can soon be back together at home, safe and happy.:joylove:

Good news, thank goodness!! I was beside myself with grief as I read this thread. :( I know it'll be hard, but try to stay strong for your son. Don't let old memories get the best of you.:)

I'm pulling for you and your son. I wish you all the luck in the world.

Sidhe

The brain is an amazing thing, ya know? Just yesterday morning I feared my son might be even more impaired as a result of his shunt revision, and tonight, I'm sitting in the living room with him watching The Simpsons and eating ice cream.

He's still a bit foggy, and seems to need rather a lot of sleep, but he is cognizant and oriented when awake, and rather curious as to just what the hell has been going on lately (he remembers pretty much nothing after a few weeks ago).

I want to again thank my Cellar family for all the positive vibes sent out. I sit here as a witness to tell you that it does, without a doubt, work, and my boy is living proof (this is twice, now, actually, in his relatively short life).

Next time anyone tells you prayer, or positive energy or whatever you want to call it, is a bunch of hooie, you tell them I said they are full of shit and can prove it!

Gods bless us, everyone!

WhooHoo Els, glad to hear Steve is home and doing well. Not sure if witches celebrate Christmas, but this recent turn of events must be the best Christmas present for you, ever.:) It seems as though you are correct about the prayer, vibe thing, along with the fact that you are a great dad who loves his son beyond anything else. I'm happy for you both, I hope my vibes helped.:D

Keep all those vibes coming, my friends...we aren't out of the woods yet. Steve has been back to have his shunt tapped a second time, and he is suffering some pretty severe swelling under his scalp, moving down his face (he looks like Popeye right now, with one eye swollen nearly shut). A mostly clear fluid oozes occasionally from his sutured incision, which is the approximate site of the VP shunt reservoir/valve.

We aren't sure if what is going on is just normal fluid to be expected from the post-surgery situation and the two shunt taps he's had (large-gauge needles inserted into the assembly to draw off cerebrospinal fluid directly from the brain via the shunt), or if there is perhaps a leakage of cerebrospinal fluid which is accumulating under his scalp. His whole face was swelled up this morning on the side upon which he'd slept all night.

His cognition has been mostly fair, but it slips during the day. He sleeps more than the doctor would like, and he has continual head pain (although it is hard to discern if it is from internal pressure or pressure from the swelling). What we are seeing has been stated as being a possible part of expected recovery, but it could also be the beginnings of signs of trouble. We simply cannot say at present.

He will be CAT scanned again on Monday. If his ventricles are still enlarged, it is likely he will have an entire new shunt installation. That means Xmas in hospital, and another post surgical adjustment period.

We fear he may lose his meager job, his apartment, his independence. We fear that he will be set back, instead of moving forward, something which we have all worked hard to have him do.

So keep the energies, the vibes and the prayers coming, please? We're all still a bit frightened, and he isn't out of the woods yet.

You know we will man. Try to find peace in your heart. blessings g

**grabs her goddess doll and does a good luck dance around it**

Wishing you all the best. I will be praying for you guys.

I'm in. We're with you.

Just back from hospital. Steve is on, like, four different antibiotics. The shunt site is badly infected, and the whole installation may need to be replaced. We'll know in a few days, after we see how the antibiotics are working.

Xmas in the hospital...

With any luck, someone from what most hospitals call the christmas jewcrew will be getting dressed up in a ratty santa suit and come around to everybody on the ward trying to cheer them up ... and don't forget the inevitable bow on the iv stand ... in fact, if they don't give your son one, you should take care of that yourself ... hang a stocking off the unused post.

We're discussing what else to try and do for him to make it a little cheerier. He's getting rather depressed, I'm afraid.

His mother is with him tonight (I spent last night until about 1:30 this afternoon), and she saw the doctor, who didn't make rounds until nearly 6:00. The neurosurgeon incised his abdomen and pulled out the lower portion of the shunt tubing (essentially, the output/drain end which runs into his peritoneum) and is allowing it to drain externally so that he can more easily sample the CSF and check its flow rate.

However, the neuro has pretty much determined that, once the infection is beaten back in a couple of days, he is going to remove the entire now-revised but possibly malfunctioning shunt installation, and implant a new one from scratch on the left side of his head.

Strange as it sounds, this is the more conservative approach as he will be operating with uninfected, untraumatized tissue, and will have control of the assembly from start to finish. It will, however, mean drilling another hole in his skull, and pullng another set of tubes subcue.

We're already pretty tired around here. It is hard to work full time and be in the hospital full time. Send strength, please. We all need it, especially Steve.

I hate to be a mojo beggar at this time of year, when people already have enough going on , but...well, I'll whore myself for my kid if I have to. Who wouldn't?

Well, I don't have anything going on that's more important. not even close. With you 100%, man. How's your new boss taking all this? I'm sure you must be showing the strain.

Last Monday, I came in unshaven, having forgotten to take a razor to the hospital with me. Nothing was said one way or the other, but I made sure to buy a razor at lunch and get shaved.

He's made it pretty clear that he doesn't need another staff member with family problems that distract from the job at hand. He hired me in hopes of crafting a more professional staff, and so all this is really badly timed for me. However, I'm still giving it my all, and the only thing I've had to do so far is to leave three hours early last Friday to meet with the doctor when Steve first started having big problems. I eat lunch at my desk while working over lunch hour, so that is already made up +2 hours.

My boss told me Friday that I was doing a good job and he was pleased so far. I take that to mean that I'm doing what I need to do at work, and that I'm keeping my personal life out of it. This is what I intend to continue to do, as long as my strength holds.

This is a short week. I'll make it. Spending nights at the hospital in a rather hard reclining chair with wooden arms does not leave one feeling refreshed and ready for the fray, and I'll be spending Monday and Tuesday nights in that chair (Wednesday night as well, but I won't have to go to work on Thursday, obviously).

Thanks to all of you once again. OC, your thoughts and energies are the best thing you can offer me. I doubt very much you are able to fly to KC and supervise my teenagers in cleaning house while my wife sits with Steve on Tuesday and Wednesday daytime, but I know you would if you could! Other than that, we're in good shape. We had our coven open Yule this afternoon, and people literally inundated us with food. We won't have to cook anything for at least a week, so that's another blessing.

It was a very emotional ceremony today. I'm so fragged and tired, plus I left my antidepressants and other meds at work on Friday, and I think I'm starting to feel the lack. I'm headed for bed now. Hopefully, I'll be able to dial out from his room on my laptop, and stay in touch. Plus, he wants to IM some of his online pals, and I'd like for him to be able to do that. He needs something to take his mind off of his problems.

Sorry to hear about the set-back, Els. My vibes are still being sent your way. I know you're stressed, tired, worried, and probably a little out of it, but please don't forget your meds at work again. At times like this, it's not a good idea to skip, even a day. I know if I forget mine, I start to feel it by evening time. I know it's hard right now, but try to get as much sleep as you can and don't forget to eat regularly. You need to take care of yourself and your body so you can continue to be strong for Steve. Hang tough, Els.

Glad your boss is being cool. Hang it there man, you'll be OK.;)

life is a bumpy road, i'm proof. hang in there keep the ol' chin up and as always, i'm keeping you and steve in my thoughts and sending my good vibes kc-bound! shoot, if i wasn't out on my medical for flying (and low on funds), i'd air taxi a few cellarites up your way! (sans guns of course:p )

Have you thought about buying one of those air bed things?

Once again I send hearty accolades for your caring for you son. My father went on a vacation while I was on the operating table (appendicitis) and I have never forgotten it. Conversely you son will never forget your vigil, and neither will you for that matter. Many good vibes coming your way.

whew that'd be a long flight!

from duats.com (flight planner for pilots)

(this was to philly to get the cellarites per NBN's verbals, my pc's out so i'm over here bugging him ....)

NOTE: fuel calculations do not include required reserves.
Flight totals: fuel: 90 gallons, time: 7:32, distance 1175.2 nm.
Average groundspeed 156 knots.
Flight Planning System Copyright (C) 1991-2003 Enflight.com.
All rights reserved.

isoluble, are you thinking of angel flight perhaps? one of many organizations out there to help people in need. i have done a few flights for them myself and it's very rewarding!

My thoughts and energy are with you and Steve hon. And ask the teenagers to set up a video camera and I will supervise the cleaning. Just ask our kids - they hate me when I supervise.

Yesterday evening, the doc incised Steve's breast area and pulled the distal end of the shunt tubing out of his peritoneum. He is now draining the CSF into a reservoir and measuring the output every two hours. The shunt is apparently working exactly as it should, because Steve is doing everything but tap dancing today. No headache, he has memory, eating like a horse, watching TV and bemoaning being stuck in hospital over Xmas!

The infection is rapidly having its ass kicked, and as such, he no longer resembles a certain spinach-eating Max Fleischer cartoon character. The doctor stated this evening that he would definitely be removing the existing revised shunt and putting a new system on the other side of his head. Apparently, there was something obstructing the abdominal drain tube, despite all imaging appearances and even what was indicated by manually flowing fluid through it. Whaddya gonna do? It works outside of the body, but not inside, and you can't put the existing tube back once it is out.

If everything stays copacetic and according to plan, we should be able to get him home in time for New Year! In the meantime, I ask you to keep consciously sending out those energies, prayers and good vibes. They work. They absolutely do work.

Oh, and BTW, because of the infection, they moved Steve into a private room, which is actually a two bed room with only one bed in it, meaning that I have a free phone line and extra TV, plus lots of room to spread out in while staying with him. Therefore, the laptop is here, and I feel much less confined. So does he, as he was able to check his email and do a little MSN chatting this evening. Freaked the doctor out when he came in and saw him sitting up in bed typing, so dramatic was the turnaround from his condition yesterday.

Let's hope he continues to freak the doctors out, in a good way, of course!

Blessings and continued healings. May he find strength and recovery in this time of the New Fire.

Good news, Els. Just curious, when would they put in the new shunt?

Friday morning, we think.

I hope that goes well. Keep up your spirits. I'm still sending good vibes to you and Steve.:)

what??