*~melzie~*'s MySpace Blog |

Tuesday, February 03, 2009

warning...rant ahead

WELL... This shunt setting
is (duh) not working. Its too fast. Its draining too fast. He's not
grossly symptomatic yet but my gosh its obvious ITS NOT WORKING FOR
HIM. I don't need a NEUROSURGERY DEGREE TO FIGURE THIS OUT. Last
night we went and got our taxes done, just hubby and I, and on the way
home I got to thinking about our appt. coming up tomorrow. I started
thinking that yes, this is stressful. Yes it is hard on our nerves,
our family, our relationships. BUT..I stopped, and I thought how this
has PHYSICALLY stressed his poor brain. 2+ months of things being
'off' in his brain. I cannot imagine how his poor brain is physically
taking all the stress to it. I mean this is all very real to me, it
all affects ME but the symptoms don't happen to MY brain. the
surgeries don't happen on MY head. Its not me waking up from
anesthesia, dealing with the pain, getting back on my feet. ::crying::
Its too hard, it feels unneccesary. I feel this doctor is erring on
the side of caution a little much. 3 months to a 50something
neurosurgeon is nothing. 3 months to a 12 year old is a lifetime. 3
months to a worried stressed mom who is watching him like a hawk day
and night is an infinity. I want to kiss him, make him better, soothe
him, comfort him. All he gets is "lets wait and see" "lets try this
again and again and even again EVEN THOUGH IT DIDNT WORK THE 1ST OR THE
4TH TIME". I've made a call to see if they are even considering
replacing this shunt this week with a different type. I want them to
know we are willing to go to the appt. and be admitted and change it
effective immediately. We are not content to wait any longer. Even
Jordan is willing to undergo surgery again to get things right. I
can't even lightly make the decision to get a tooth pulled, I cannot
imagine the frustration behind willingly doing a brain surgery. But
its to that point. We are losing faith in our most important doctor
and thats not a good place to be.

In other news my washer froze up literally during a load of laundry today.

I think I'm getting an ulcer.

SO to recap, we need to schedule-

shunt/brain surgery

Jordan a dental surgery

Jordan an eye surgery

Cody has 6 cavities to get filled

Jordan and John have sealants to be put on

A fairly large remodel I don't know how I'll afford...My
bathroom/laundry room is falling down. My toilet barely functions and
leaks all around it. My bathroom sink leaks around the faucet AND the
drain. The floor is showing through and soft and fixing to be falling
through. My washer is froze AGAIN.

My car got stuck about 10 times in the snow and now keeps dying. My truck has a busted radiator.

Did I mention my possible ulcer?

Please pray for Jordan. For me to keep my sanity. And my job. Sorry to just vent & run :(

xoxo melzie

3:56 PM

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Saturday, January 31, 2009

posting from...

the hospital :(
got here, got the ct scan. he was very high pressure (Sigh) so they turned him to draining at 1.0 to *hopefully* relieve pressure somewhat quickly. He started feeling better and symptoms resolving within about 2 hrs which is very good news because it means the shunt itself is not obstructed. they will observe him overnight. BUT they are now starting to see that this type of shunt is not working for him, and are discussing options, all of which are of course surgical. he's in a very foul mood understandably. in other news even tho our power came back on the water system is down now. so bobby is watching the kids but there is little to no water. when it rains it pours :) danny can't decide to stay or go. really doesnt matter to me its for his own peace of mind I'd just as soon he stay because if J does ok overnight they will send him home tomorrow. his actual neurosurg is out of town so the on call won't do much beyond emergency stuff kwim? so thats it. love you all xoxo melzie

12:49 AM

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Friday, January 16, 2009

update after thurs. appts.

Silver linings...

Well went to J's eye appt. yesterday, the news was *good* :) There is no actual damage to his vision or optic nerves, its just the 'wandering' eye issue. They will schedule a surgery to correct it, but not for a couple mos. down the road to give it time to hopefully finish healing on its own. Then jaunted over to the neurosurgeon to turn the shunt back up to 2. Hoping and praying this will work now, trying VERY VERY HARD not to be negative and paranoid. Trying not to hound him every 30 min. with "how you feeling now?" sigh. Failing.

Then, of course this week with single digit temps and wicked north winds our water froze, got up this a.m. to main water line busted/leaking all over hot water heater closet/floor/wall. Trying not to get discouraged over this, or wonder how we are going to fix/replace our whole bathroom utility room this spring/summer with NO FUNDS. Failing.

SO then I get online, and GUESS WHAT? I WON A WHIRL INTO WINTER GIVEAWAY! You can click to see what I won. One of my favorite ones I entered, a brown corderouy purse! I am so happy :) That makes me feel better. Still struggling not to sink into the deep pit of depression, still treading water right now but lots of little blessings keep me afloat, and this is a huge one! Thank you to Rebecca for hosting a great giveaway :) Thanks to you all for your prayers. xoxo melzie

3:14 PM

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Wednesday, January 14, 2009

newer update again for wed. VENT WARNING

ok just venting here but OMG yall the nurse asst. just spoke with me again, they want to tomorrow turn him back to *2* and see how he does, I said ok so what if, he doesn't tolerate 2 (too slow, buildup of pressure) and he doesn't tolerate 1.5 (too fast like now) then what? She said then we turn him back to 1.5 and leave him as he is. OMG YALL that is so unacceptable to me. This is NOT JORDAN 100% YET and anything less than that is NOT ACCEPTABLE TO ME. How DARE they leave him half 'fixed'? My stress point is fixing to snap I would love to see them leave THEIR child less than HEALED kwim? Sorry..just venting...

5:35 PM

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Wednesday, January 14, 2009

update on J

Well J went back to school Jan. 5, did *ok* then Jan. 6 had a meltdown and wouldn't leave the nures office all day long. So starting Jan. 7 he has been on homebound via the dr. and school agreeing he needs more time to recover at home. He's having some physical symptoms, some emotional/behavorial. SO we went to the neurosurgeon today. They did a ct scan, and said all was draining well, in fact maybe too well. The scan wasn't very clear on it. We didn't get to see the actual dr (of course, even though they said I would so some kind of miscommunication there) but as you know sometimes nurses (assistants whatever) know as much or more lol. She wanted to turn the pressure back up to a 2. Well 2 was too slow, so *maybe* 1.5 is too fast. there is no 1.75 (I asked). So he is to see the eye dr. Thursday, hope and pray they can *fix* his eyes and see if that helps his deteriorating feeling of well-being/headaches as the day progresses each day. But now that she mentioned that, and I did some research on the symptoms it does sound as if this is the problem. She wanted to turn him up to 2 today..I wanted to wait on the eye appt. So if 1.5 is too fast and 2 is too slow I have no idea what they'll do, my best guess is put a different kind of shunt in. I have a bad feeling that overdrainage IS the problem but lets say a prayer the eye dr. will fix it instead of possibly another surgery. I am teetering very much on the edge of full blown depression. This is just so ongoing and so vague and hard to pin down right now. Please pray for him/me/us. Thanks xoxo melzie

5:38 AM

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Monday, December 15, 2008

I AM.......

HOME ALONE!
CUE THE CHOIR!
HALLELUJAH!
lol We are getting/expecting a winter mix of rain, sleet, ice etc so it may be short lived. I have a couple of things to take back to the stores but I think today I will just clean, bake, and enjoy being home, maybe even watch Young and the Restless which I have missed for endless days. I have to work Tues.- Thurs. so today or Fri. is my last chance and Fri. the kids have Christmas parties at school in the a.m. and then out at noon. This week is nuts, Tues. night is our youth group, Wed. night is Cody's band concert, Thurs. night is John's Christmas program, Sat. night is our Christmas play, I'm tired already.

anyone watch Survivor this season? I thought it was great :) One of my favorite seasons ever. I was really pulling for Matty or Sugar. I liked what Sugar did (forced the tie) but knew Bob would win. And I knew if he got to the jury vote he'd win too and he did. Sugar choked at the jury tribal and it slit her throat. I about fell out when Susie won that final immunity. I really enjoyed this time :) Now to wait for American Idol coming up next I have nothing to watch til then LOL. xoxo

9:53 PM

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Friday, December 05, 2008

last details and pics of J

DRAMA DETAIL AND PICS

This was the first night home from the hospital (Tues). Note the cats everywhere. I think we are turning into crazy cat people. See that big bottle of bbq sauce? I brought J a bottle of it to the hosp, in 10 days time he used the whole thing. He'd eat chicken strips for breakfast, lunch, supper, late night snack LOL.

Here is J tonight, looking a lot more like himself.

Here he is the night before he got sick. He actually had a headache this night. I even went so far as calling the neurosurgeons. I told them we'd bring him in Sun. a.m. to be checked but that I really thought he had a sinus headache after getting over a cold. If you click to enlarge you can see (in retrospect) that his eyes are a little wonky even here. Big mistake waiting til morning, when I woke him up Sun. a.m. he was critically sick already.

I was going to give a long update about details about J's trauma. But I will just get into one part. Because it seriously scarred me for life. I think it probably scarred my BFF Michelle for life also.

He was transported by ambulance from our local hosp. to the StL Children's hospital. My bff Michelle got there almost as soon as we did. Sat with us all day. They took him back to surgery about 9pm Sun. night. He was up in a room asking for food and the playroom by 11pm. Hubby went home at 11:45 or so, (had to work Mon. in order to get holiday pay for the rest of the week). Michelle decided to stay with me. They even got her a sleeping chair/cot for in the room with us since we were in a room privately. J went to sleep about midnight. Michelle and I talked until about 2am when Hubby got home and called. The nurse came in at 1:20 and I said "whila go he was kind of moaning 'oww' in his sleep". She said "well I was suppose to give him Tylenol at midnight but I've been running behind.". She came in at 1:45, gave him Tylenol (only the bathroom light on). He never really roused up. Talked to Hubby, then turned off the lights and Michelle and I talked til 4am. (we never get quality girl talk time that long uninterupted). We both noticed several times that he was snoring ENORMOUSLY (unlike him) and gritting his teeth CONSTANTLY (not normal either). That breaks my heart because I was RIGHT THERE that was apparently the pressures going up to dangerous levels but I never knew. He had an external shunt and she was supposed to check the output. From midnight til 2am he put out 3 ml and from 2am til morning was zero. This kid puts out 15 ml an hour EASY. She never noticed. SO at 6:25 a.m. the neurosurgeon came in to do rounds, and J was 1000% non-responsive. Pupils fixed and dilated. No response to any painful stimuli. Lights flipped on, rapid response was called in. They rushed around him for about 10 min. putting on oxygen, the nurse flapping her hands around saying I gave him Tylenol at 4am and he woke up and took it (IT WAS 1:45 RIGHT BEFORE I TALKED TO DH), the doctor said "you mean this Tylenol that ran down his mouth and out his pillow?" OMG you guys he never even swallowed it. She was suppose to wake him up for neuro checks every hour, check pupils etc. He got rushed to OR, and it took 2.5 hrs. Thank GOD and thank you MICHELLE for being there because I could NOT have held it together otherwise. I had honestly no idea if he would wake up from that or not. The last half hour I just cried, that silent tears running down crying because if I started sobbing I don't think I'd have quit because I think at that point I honestly didn't know if God was going to take him home or leave him here.

So apparently the blurred/double vision and short term memory problems he is having is basically a brain injury. It is improving but my prayer now is he doesn't suffer from any brain 'damage' from this injury. I cannot get that scene off my mind. I cannot get how he looked out of my eyes. I cannot get how he sounded with me RIGHT THERE out of my ears. Most of all I can't get the guilt of not knowing out of my heart. I was RIGHT THERE within arms reach of him. I also can't get over how sick he got so fast. We knew he could get sick fast but not that fast. I am afraid now to let him go to sleep, because what if his shunt stopped working at 10pm and I didn't know it? I am having bad dreams (storms, tornadoes, floods), I am tired, I am waking him up through the night still. Its a living nightmare and I don't know how to go back to normal. But I don't want to be blase and let him go all night and wait til morning for what might have been a sinus headache. So yes, we are home but J or I neither one are fully recovered yet. Thanks for your prayers, hugs, support. It worked :)
xoxo melzie

12:56 PM

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Tuesday, December 02, 2008

good update for monday!

ok, so now that the holiday weekend is over the quality of nurses definitely improved (thats sad though). We've had very good nurses the last 2 days. Danny was suppose to stay home and work today and maybe tomorrow but couldn't make himself stay away he went home yesterday afternoon and was back by 9pm. The boys are staying with Bobby (oye lol) but all is going well so far there. SO yesterday for some harebrained cockamamy idea they were going to turn his temp shunt very low moving and then at midnight were going to turn it off. Thats when I called Danny at home freeeeeeaking out I was like no WAY did he get in as bad of shape Sun. night as he did with not draining for a few HOURS and they want to turn it off from midnight til 8ish a.m.?????? Well they needless to say were NOT able to do that, when they turned it to about 25% function he was very very ill within about 45 min. Helped too that we had a nurse who agreed last night. Some nurses are all just extensions of Doctor's brain's, some nurses actually have brains of their own ;-) so he went to surgery this a.m. at about 8a.m. back in the room by noon. Ate some pudding by 2pm and when I left to come down here he was eating chicken strips and chips. He is a little more sore, they put it in his chest area this time instead of his abdomen area. If all still goes well he will go home tomorrow afternoon, then 10 days at home before post-op checkup and stitches removal. SO I just pray now that the next 24 hrs go by fast and hopefully the next time I update will be when we are ALL at home! Love to all, thank you soooo much for the prayers and well wishes. xoxo mel

6:53 AM

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Sunday, November 30, 2008

saturday update GRRR

update today is I am fixing to go nutso on some nurses. His temp. shunt is NOT draining like it should, this is hour 2 of it and she is NOT concerned and if she'd look in my eyes she'd be alil more concerned. I was getting my stuff ready to go home for the night when this started. I guess I will hang out longer and see what happens. Honestly this hospital's quality has fallen so so far since 4 yrs ago. I wonder if they are out of money (its a new fiscal year tho) but no cleaning gets done, the nurses totally suck, etc. I hate to be negative but thats the truth. I was going to spend the night at home, do laundry and bring the other boys up for a couple hrs tomorrow and then Danny was going to head home Sun. with the kids, he has to work Mon-weds. If we get out fairly early tues. he might take a day off. If its going to be afternoon anyway, he gets off at 2 can be here by 430 or so. SO thats it today. Jordan's feeling foggy and woozy, probably because his pressure is creeping up with the shunt not draining. GRRR xoxo mel

2:43 AM

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