I am excellent at boredom.

Sitting in the hospital is sooo much fun.  Why yes, that was sarcasm.

Sigh.  Last week we finally got into to see neurology (been waiting since January).  They did a regular EEG and our dr took a quick peek and saw spikes in the rear of the brain (visual area) which could explain the vision loss spells Southen darlin' has been having for the past year. She was all set to start seizure meds ehen another dr read the eeg. They saw the spikes too but weren't sure of the frequency and so now we are doing an overnight video EEG.   We are 5hours into Southern Darlin's 20 hour EEG and I am bored to pieces..

I am not meant for sitting around stuck in a room.  Now I can laze around with the best of them if I want to but when I have to?  Bored to pieces!!   I would really suck at bedrest.  Ha.   Speaking of bedrest, I finally have a surrogacy blog up and running .  Click here to check it out!

Well back to being bored with this little girl for a while more.

Stretch it like a rubberband..

Fishing Pole went into surgery yesterday as he always does.  Head held high and flirting with the nurses.  Lumpy & Puppy accompanied him, we decided that this surgery needed more than just one animal friend.

I am always amazed at his resilience..

We counted yesterday and this was surgery # 9.   (1. heart defect repairs, 2. bronchoscopy, 3. pacemaker, 4. pacemaker repair, 5. pacemaker repair..again, 6. endoscopy, 7. adenoids, 8. Weenie surgery, 9.Spine surgery)

NINE in 6yrs and almost 4months..

Nine..

It's incredible to imagine isn't it?  That's not even all the hospitalizations because he's had several hospitalizations for observation, the weird wire swallowing incident, and things like that.


Yet he's always a trooper.. He doesn't seem to mind too much and always just says "Well , they will fix me at Riley".

Momma, is not quite such the trooper.  I'm used to this routine by this point but the stress gets to me.  Watching him wheel (or for the last 2 surgeries-WALK) away into the OR is still just as scary as it was the first time when he was 3months old.

I'm ready to be done.  Let's not find anything new that might need fixed, okay/??  I know , I know.. Tonsils are coming up in less than a month (3 surgeries over his summer break-- talk about a craptastic vacation) and his pacemaker battery is quickly depleting.. But other than those planned ones- Nothing else, okay?   I'm feeling run down.   I need a break from the stress..  I need to whine for a bit.  Life as a mom to special needs came be rough sometimes.  It's times like this that I wish I could yell at his biological mom. I wish I could shake her til her tiny brain rattles and make her realize the damage she did to these boys because she couldn't give up her drugs . Not even while she was pregnant.  But I know it wouldn't do any good.. She wrote Fishing Pole off the minute he had his first surgery & got his first scar.. He wasn't "perfect" anymore.  So I doubt she could care less that he's had all these other surgeries. She's never showed an interest. It breaks my heart and makes me beyond furious at the same time.

Regardless of all that, we move on.  We continue to march forward and face whatever knew challenges might be thrown at us (and Lord only knows what they'll be.. because Fishing Pole, he likes to be rare!) because that's what you do as PARENTS.

Surgery went well yesterday. We got a very late start due to the surgery prior to us going over quite a bit. But everything came well and I can honestly say that his surgeon?  my new favorite dr in the world.  She is beyond awesome.  Everything from her bedside manner (she even goes with him to recovery until he's all settled in) to her ability to explain things easily and to take her time if you want to know more.  After the surgery, we sat down to talk with her about how it went.   We went into this surgery as a "maybe" fix.  Due to the pacemaker, FP can't have an MRI and the CT didn't show a lot to go on.. So we made the decision to risk the surgery based on his symptoms alone. Luckily it was a good decision to make!  She went in and found that he did not have a "functional tether" as she had assumed based on the CT but a full anatomical tether that had the spinal cord stretched VERY tight.  As soon as she clipped the filum, it snapped back up to where it should be like a rubberband.

I admit that when she said that I said YAY!!  I was so glad that we didn't go thru all this for nothing. I was glad that there was a reason and that hopefully this will fix his incontinence issues & leg pains.

Since then, the boy has been laying flat in a bed - a feat that I thought would be impossible to accomplish, he had done without much complaint at all.  Of course valium does wonders :)  After spending the nite on the heart floor (boy was he mad) to appease his heart dr, we have now moved up to the neurological floor in the NEW tower and Ohh la la.. what a room.  A HUGE big screen tv is positioned right in front of his bed.  Every room has it's own Wii (which is is now playing).  A pull out comfy recliner next to his bed is a blessing because those hard chairs were killing me yesterday.  On the "parents" side of the room, we have our own tv, a desk & the pull out couch.  And of course a private bathroom.

Due to superboy being spectacular in his healing abilities (it must be his super power), we are ahead of schedule and might get out a day early!  Yay :)


xoxo,

Another day, another EEG

Well this could be fun..

My first post written entirely on my phone.. watch out autocorrect..

So you may recall that Dimples decided to mix things up just a little and add seizure (imagine this is linked correctly.. boggling from phone and all.. )to his medical resume..

Well he decided that one seizure episode just want enough and had a new one earlier this month. Completely different than the last one because really? Why not be different. Lol.

This one was an absence type seizure. He was sitting in his carseat yet again (hmm, maybe its the carseat ? Lol ) and was staring straight ahead, mouth hanging open, drooling... it last 1-2mins and then he snapped out of it and was fine.

However it landed us here :


Getting all hooked up for the 24hr video EEG at the hospital.

TWENTY FOUR hours.. yeah I imagine this going well.. HA

So far we've :


Watched Tangled ( his new fav movie, replacing Nemo. This songs go thru my head non-stop) , caught Phineas & Ferb on Disney (he doesn't understand dvr and assumes its always on everywhere whenever he wants to watch it.. lol ) and finally, its naptime.


Only 21.5hours left.. Wish me luck !

xoxo,
' />

Of Hospitals and Hotties.

Yet again I am awakened by a phone call. 

Those can never be good.

Yesterday - Gpa Chaos was rushed to the hospital via ambulance.   Again.

I feel like he was just there although it's been about a year since the stroke.  It's all still so fresh in our minds.

I'll spare you all the details, the tests done, the hospital transfer.. But for now he is doing ok.

The consensus is that he had a small heart attack.  He has what appears to be pneumonia in the bottom of his lungs (although every single time he's in the hospital it shows up there.. seems odd to me).  For now he is feeling better.  Completely drained, so tired he just wants to sleep and sleep and sleep.   

Ironically he just had a big workup at Cardiology last month (or so) and they commented on how his heart looked the best it has ever looked since he started going there.. And then this.  His cardiologist calls him perplexing.. Yes indeed he is.

I was up visiting him last nite and while he slept thru most of the visit, he woke up just a little while before it was time to get kicked out.  Respiratory was in giving him a breathing treatment and the therapist was very quiet-- not a chatty .  

Whatever was on tv (no clue we weren't really watching, just background noise..)changed and the Black Eyed Peas came on..  Our conversation went a little something like this :

Mom:  Is that the Black Eyed Peas?
Me:  Yes
Mom:  Who is it that Fergie is married to again??
Me: ohhh.. I can't think of his name.. that guy from Las Vegas..
Respiratory Therapist:  She's married to that really cute guy Josh Duhamel !!

"Ahh yes.."  we all signed..
Dad: Oh my god, you women are all the same.. *bad imitation* Ohhh, it's that hot guy.. oooh..

Lmao Mom and I laughed after she left.. It was a bit funny that the respiratory therapist didn't say so much as a peep (non-breathing treatment related) until we casually brought up a hottie and then she jumped right in.. lol.   It gave us all a giggle despite the circumstances..



xoxo,

Misc. Monday

Before we get to today's regularly scheduled post, I want to thank everyone who commented on my Failure post.  I wasn't looking for sympathy and quite honestly thought about deleting it a million times right after posting it.  But I decided, to hell with it, it's my blog and that's what I was feeling at that particular moment.  I've been able to pull myself out of the pit I was sitting in and honestly you're words of support helped a LOT.   So thanks!

I've also started contributing at a new upbeat place- all about one of my Favorite places on Earth.. *cough* Hint, Hint! *cough*   I'll share as soon as the official Launch happens!

Gpa Chaos (my daddy, yes I didn't name him correctly when I fake-named him - oh well) has taken up a bit of my mind lately.  He had a lovely trip to the hospital over the weekend. You see, he gets these mystery spells & his blood pressure crashes among other things. So he got the joy of spending the weekend in ICU & had to watch Superbowl commercials there alone - :o(  He is stable now and naturally they have released him and he's on his way home again.  Doctors frustrate me sometimes.  They never seem to figure out anything anymore.  They can't figure out TheToddler's issues and they never can figure out Gpa Chaos' issues.  They just treat the symptoms , get him stable and then shove him out the door without ever figuring out WHY.    At least he's better, right?!   


                xoxo,

Surgery again- part 4

It's dragging out isn't it? Better several short posts than one huge long one though, at least that's my theory.  In case you missed them , go read Part 1, part 2  & part 3.

~*~*~*~*~

He made it thru surgery just fine.  The surgeon (not the one who originally placed the pacemaker, although he did do the 1st lead replacement) did agree that moving the pacemaker was in his best interest and put it where he normally places them.  He assured us that he always places in this spot (left side just below the curve in the ribs) and very rarely has any lead issues.  It was decided that since the pacemaker still has 2.5yrs of battery life left on it, they would leave the same generator in to not waste (which is great because I like to pretend to be "green" and all, but it's kinda sad because it definitely means we're looking at surgery in another 2- 2.5yrs again).

So the pacemaker was removed (incision #1) and placed in it's new location (incision #2). Sadly there was too much scar tissues in the old site (this was the 3rd time it'd been cut open since they used the same incision at the last lead replacement) in order for the dr to connect the lead to the heart so my baby got yet another incision (#3) to attach the lead.

I thought it kinda looked like a smiley face minus the mouth so Drool Prince begged me to draw a mouth and take a picture :o )  If you look closely you can see the drawn on mouth, sorry I only had a pen -no markers to be found..



Something I'm not sure I mentioned or not- Drool Prince initially fractured the lead back in July but we were able to get the settings all turned up high enough to have it still work for a little while.   When that happened, it seemed to coincide with Drool Prince having potty accidents. The very first one he'd had in months was while we were at the hospital getting an x-ray to confirm a lead fracture.  I mentioned it to Dr Heart and she assured me that it couldn't possibly be related to the lead fracture, surely it was behavioral if anything.   I find it a very BIG coincidence that as of Monday night after surgery, the boy woke up to go pee and has not had a single accident (except bedtime) since. Interesting!
As normal, Drool Prince recovered quickly.. We got out of the hospital Tuesday around lunch time.  By Wednesday, he was already ripping steri strips off. UGH!  The incisions never really bothered him but there is this tiny little nick that he got while back in surgery.  This teeny tiny speck that is absolutely KILLING him.

Can you see it?

Silly kid.. He's crazy like that :)  It's always the things that you would think would never be noticed. He notices those.. Yet he also rips off his steri strips & picks at his newly healing scars.. UGH!!!

As I write this we are now 2wks post surgery so naturally all the steri strips are gone. I did have to go buy him a onesie (did you even know they made 3T onesies?) and made him wear it for the 10days following surgery so he wouldn't pick them off immediately.. Argh!! He is definitely back to 100% and if you didn't know he was cut open in 3 separate spots 2wks ago, you'd think he was his normal bouncy self. 

And that my dears, is the end of this round of Surgery posts.. Let's all cross our fingers that  I don't have any new surgery posts for at least 2.5yrs!!

                      Xoxo,

Surgery again - part 3

**If you  missed  Part 1 or Part 2, please go back and read those first! *

Monday was to be the day.  Daddy Chaos got the kids off to school, dropped TheToddler off with Cowie and hurried down to the hospital.   Naturally he missed Dr Heart by about 10mins.

You see, there was some minor worries that they were not going to repair the pacemaker.  Something an on call dr mentioned about maybe Drool Prince had outgrown it and they'd just trial it without.  Let me tell you Momma freaked out.

No one wants their kid to have a pacemaker. Believe me. It's not something you think, hmm I hope this one can have heart issues and need a little metal box to help things work properly. Never.   Drool Prince doesn't use his pacemaker a lot.. He only uses it around 1% of the time.  In the scheme of things, 1% isn't much. But when we're talking about a heart beating- I want to know that it's going to be 100% of the time, not just 99%.  Sorry, that's just me I guess?

So I expected to be in a bit of a fight with Dr Heart over repairing it vs leaving it.  I wanted Daddy Chaos there to lend me moral support and jump in when I got overwhelmed.  Obviously that didn't work.   Thankfully, Dr Heart agreed with me.  Yes, DP uses it 1% of the time but obviously that means he still needs it.   She agreed that we needed to get it replaced and she also agreed that we needed to talk to the surgeon about getting the placement moved.. Surgery every year & half or so is not really acceptable.

Initially we were told that Drool Prince wouldnt get on the schedule until Tuesday and we were given the OK to eat.  Fortunately for all involved, the cafeteria still had some old allergies listed and it took us a while to get that resolved so we could order some lunch (we'd be food/drink free since the night before).  The surgery nurse came running in to see if he'd eaten yet because like magic there was now some room on the surgery schedule for him TODAY!  Back to no food/water.. ugh.

Drool Prince was not happy. He is a huge drinker.. He wanted something, anything to drink. Poor kid, Momma felt his pain.. I'm a drinker too. (no not like that.. silly peeps).

Finally it was time to head down to surgery.. Lumpy had recovered from his brief spell of cowardice and joined Drool Prince back on the bed to head off.  Naturally I snapped some pictures..

Momma: Smile, Drool Prince. I want to take a cute picture!

Drool Prince: *giggles I am smiling Mom.  Take the picture. *giggles*

Note- that is Daddy Chaos' hairy arm. NOT mine!

Little booger :) He was just soo nervous about the surgery -- NOT!.

We headed down in the wheel chair and sat in the surgery waiting room where the nurses gave him more gloves to play with (he has had an obsession with making glove balloons since a nurse showed him that when he was very little), a slinky & a new car. Did I mention that he gets spoiled in the hospital? lol.

Success!!

The nurses gave him some versed so he wouldn't be so nervous going off and ohh my did I get some good pics of him being looney.. I can't share, of course, due to the whole "against foster policy" but they'll make great blackmail :)

He went into surgery w/o a peep and as usual had the entire O.R. laughing at his antics.  He was reported to be the best blower of balloons (something anesthesiology made him do to go to sleep) EVER!  They also held off on the IV until he was under so he didn't have to feel the sticks.. Bonus! :)



                     Xoxo,

Surgery again - part 2

Yeah, I know.. I know.. I slacked off and didn't finish the whole "surgery" story.  Sorries!
If you missed it- go read part 1!

~*~*~*~*~

So Sunday (10/17) came bright and early for those of us that didn't sleep for crap and kept checking to make sure a)the kid's heart was still beating & 2)the belly was still a jumpin.

We did breakfast and then decided to drop off the oldest four kids at Gma & Gpa's house while  Daddy Chaos & I took Drool Prince (and TheToddler) up to the more local hospital to get the pacemaker checked.  

Initially I thought I'd go to a different hospital 20mins away vs our bigger hospital that we normally go to that is 35mins away.. You see we changed to a pediatrician and he only goes to the 20min away hospital.  Let me just say it's a good thing that I called them first because they quickly informed me that they didn't have the machines to interrogate a pacemaker & I should go to the one that we normally go to.. FINE then. geesh.

We decided that rather than all four of us going in, Daddy Chaos would drop DroolPrince and I off at the ER and he could take TheToddler shopping for a little while- this way he'd be nearby if needed but not confined at the hospital with us. 

Let me tell you, there is nothing that gets the nurses moving faster or gets you into a room regardless of the other people waiting in the ER than going in to tell them that you are here for a pacemaker interrogation because your kid's pacemaker isn't working right.  Zoom- back to a room immediately! 

We got settled into our room and promptly spoiled.. Drool Prince wanted a gown- sure he could have one.. He wanted some gloves to blow up- sure he could have some.  He wanted a cool drs mask- sure, take as many as you wish! 

Dr. Drool Prince is watching Scooby Doo (his current favorite show !!).. He's adorable :) 

The drs came in and hooked him up to the monitors so we could watch the alarms go off  for various things.. Nothing like hooking this kid up- he always sets the alarms off and looks just fine while doing it. 

Finally the pacemaker interrogator arrived and got the machine out. He got a kick out of seeing the tummy jump (apparently he hasn't seen it before) and after a few quick calls with our Children's Hospital it was decided that the pacemaker was indeed pacing DP's diaphragm.  They couldn't get it to sense the heart at all and so it was Turned.OFF.  ack. 

I'm sure you know what came next?  We headed down to the Children's Hospital for overnite observation.  Is it ironic at all that we were placed in the exact same room that we had both times we had pacemaker surgeries?  An omen to be sure.  Of the 5 times we've been in that hospital, 3 of them were now spent in the same room.  

Every time I get there, I eagerly ask if the big corner room is available?? Sadly it's always full. We had it ONE time and that was the stay of our lives. Loved that room.  The nurses always look at me funny that I know how big each of their rooms are and know the pros & cons of each of the heart center rooms.  Yeah, I'm here alot it seems.

Don't you just love those pull out chairs that make into a bed? How do they expect a person that normally sleeps on a king size comfy bed to sleep on this?? Seriously?

Drool Prince and I settled in.. hooked up to monitors again, given 2 new sets of scrubs for DP to choose from (and bring home.. score!)..  So we sat back and watched movies..

Yep, Pooh Heffalump movie has always been a hospital favorite for us :)  Lumpy was even along for the stay- although he seems a bit more nervous about the impending surgery than Drool Prince was.

Lumpy tries to escape!

 In the end, we got to sleep thru the night knowing that tomorrow would probably bring another surgery.

                      Xoxo,

Gpa Chaos

If you follow me on Twitter then you know that my dad aka Gpa Chaos has been ill. Very ill.

I kept promising a blog post about it but I just can't.  It's too emotional right now and I dont have it in me to let it out yet.  Once everything is over & he's all better -God, Goddess, Allah (whoever else you want to toss in) Willing,  I'll post it.. But for now things are still scary and sad .

Gpa Chaos has been in the hospital since last Thursday. The drs seem to be thrilled (and a bit surprised) that he's still alive.  But he's beating this still unknown enemy.. We are hoping he'll get to come home by this weekend but it's still a long road.. He has lost soo much mentally- odd little everyday items that he has no clue what they are, memory lapses where he's forgotten his grandkids, the ability to READ..  It's difficult to watch , let alone know how he is feeling so helpless and lost. Worried that he'll always be feeling lost.


Gpa Chaos really needs your prayers.. Prayers for a full recovery.. Prayers for health.. If all else fails, prayers that he can accept this new life.  We wont give up, we'll have full faith that he will  get well and be 100% again soon.  But prayers always help.

Going home!

Saturday morning dawned and Drool Prince was finally allowed food/drink! We were able to coax him to drink a few sips but for some strange reason that no one seems to know- he was never weaned off his dexamethasomethingorother before he came back to the room from recovery. This was the med that kept him pretty much asleep and mostly pain free. Good right? Yeah, great until you want him to wake up and eat/drink so we can go HOME..

The dr came in to check on him & ordered that med stopped so the poor kid could wake up.. lol. They have no clue if the lead broke due to a kink (since it was put in when he was 19months old, they put in extra lead & roll it up so it can let out as he grows) or something that Drool Prince did himself. Dr did say that the break was closer to the heart vs the pacemaker so in an older kid that'd indicate a blow to the check.. Obviously that hasn't happened here so he said we'll never really know how or why it broke.


He ate and all was fine.. until the puking began. Why did Daddy have to still be at home? I do NOT do puking.. Thankfully the dr decided to let us go home anyway & just chalked it up to a reaction to the codeine in the tylenol w/cod.

We got home and he decided to get a low grade fever & puke some more.. Lovely. I was definitely worried that we were going to end up back in the hospital but thankfully Sunday morning he woke up feeling great. Soo good in fact that he only had 1 dose of pain meds..

Monday he felt even better- so at 3days post surgery he was completely off all pain meds. In fact, he felt sooo good- the he decided to take off his gauze & rip all his steri strips off immediately upon waking up. Grrr! I put new gauze on & am hoping the boy will Leave It Alone!

While I'm glad he's feeling better, he's now back to bouncing off the walls.. I'm kinda wishing for some of that dexamethasomethingorother to calm his little butt back down so he can actually heal up.

Surgery Time ...

Surgery day finally came. The entire time from getting to the hospital & waiting til surgery time was uber stressful.

I'm sure it had absolutely nothing to do with the fact that Drool Prince's monitors were alarming every few minutes - *missed beat*, *HR low* (our great nurse from Thurs nite tried to fix that by lowering the rate it'd alarm at down to 50 instead of 60 (which ironically had already been lowered from 70) but Drool Prince just decided to beat it and went below 50bpm), *pvcs*... you get the picture.. Finally the alarms were silenced so we could sleep but in the dark you could still notice when it would alarm b/c it'd flash..

Surgery time finally came around 1pm. I'm glad we were fit into the schedule b/c otherwise that meant us staying in the hospital over the weekend and getting surgery sometime the following week. They were not letting us out of the hospital until it was fixed.

Drool Prince was a champ- he went back into surgery without crying at all. He did question why we couldnt' go with him but finally consented when we assured him that we'd be waiting for him to come out. Apparently he was cracking up the entire surgical team up until the time he went to sleep. Drool Prince took his favorite Lumpy (heffalump from Pooh) with him into surgery & Lumpy came back out w/ his very own arm waist band!

Daddy Chaos & I ran downstairs to McD's (bye bye diet..) to grab a bite to eat since none of us had eaten since 6pm the nite before. Drool Prince was allowed nothing due to not knowing when surgery might be and we weren't leaving him to get something , even in shifts, because neither of us wanted to be gone when he went down for surgery.

I have no clue why surgeons ever give an estimate on how long a surgery will take. His first heart surgery @ 3mo was supposed to take 3hrs but took over 5hrs. This time we were told about an hour.. NOT.. Almost 3hrs later we finally got to go back and see him.

Surgery went well. They removed the old lead, put in a new one & were even able to use the same incision as before so -no new scars! The actual pacemaker still has at least 5yrs of life left on it so it wasn't replaced. Drool Prince was kept pretty doped up the rest of the day/nite. He could barely open his eyes and spoke maybe 3 sentences the entire time.

Everyone was glad it was finally over & all was well. Daddy Chaos took Baby Bug and went home so he could get down and play.. ok so that was the excuse used, we all know Daddy Chaos just wanted to sleep in his own bed again.. brat.

Discovering the problem.

...continued ..

We get down to the hospital around 8pm and have to go to the ER to check in. We've done quite a few of these late nite ER check ins for Drool Prince before but never has it been quite so packed. Picture me looking around and trying to find the 'safest' non germ catching spot to sit while we wait. I did have Baby Bug with me after all & he had his surgery just a week prior so I did NOT want him getting sick.

Thankfully we got back into an ER room within 45mins which was pretty dang fast if you'd have seen how packed that room was. Our ER nurse did tell us that most were there for either a)asthma attacks, b) seizures or c) falling on their heads on concrete (3ppl). So at least it wasn't actual contagious stuff. Odd that everyone seemed to have the same issues at once.

Drool Prince got hooked up to monitors and put in bed to watch cartoons while we began our 4hr wait to get a room on the cardio floor. We went for an xray to verify whether the lead was broken or just needed adjustment. I'd been assured that the xray could confirm lead breakage and we'd be done with tests OR it could confirm the lead was fine & we'd begin a marathon of tests to find out what the actual problem is. Kinda hard to know what exactly to wish for.

Our nurse came in around midnight & had the forbidden needles with her. She said the xray confirmed the lead was broken so she got to come start an IV and take blood. Drool Prince was NOT happy.. It took three of us to hold him down to get the vampires satisfied. Poor kid :(

The resident came in to talk to us just before we went up to our new room (ironically the same shared room we were in when he got his pacemaker implanted). Not only was the lead broken (he only has 1 lead) but it was in two complete pieces. Apparently that's pretty rare because all the drs we talked to over the next two days were in awe of that. It was explained to us that normally when a lead is 'broken' it still looks intact yet you can see a small sliver or fracture on it. Apparently Drool Prince doesn't do things half way- his was in once piece up by his heart and another piece down by his pacemaker.. lol.

So we were sent up to our room to settle in and wait to be fit into the surgery schedule the next day. Our nurse that night was Awesome! He was soo sweet, even asked to hold Baby Bug. He let us all stay in the room there w/ Drool Prince- daddy & I took turns sleeping w/ Drool Prince in his big bed and sleeping w/ Baby Bug on the pull out chair bed.

The wait had begun..

**no clue why blogger decided to originally post this in itty bitty teeny tiny print that even an ant couldnt' read.. **