The one with the nearly severed ear.

Let me start this by saying that I wrote this days ago on my phone with the handy dandy Blogger app.  If you don't have the Blogger app for your phone- don't bother getting it. It's completely worthless!  No copy & pasting allowed.  You can't pick where you want the photo to go, and when do you get a post written it refuses to post OR Save! ARGH.  Hence the reason I am now re-writing this post and possibly loosing any humor that was in the first telling.  Again, I say ARGH.

So this was meant to be the story of Spoiled Princess' ear and how it is that she ended up with it nearly severed.  It's really not as gloriously gory as it sounds but who could resist a title like that?

Several months ago, Spoiled Princess started complaining of pain in her right ear (yes the particular ear is important for later).  It started out after swim lessons but eventually it was hurting on days that she didn't have swim lessons.   So off to the doc we went .

Dr H, our absolutely favorite pediatrician - so beloved that my nearly 20yo still goes there b/c she doesn't want to lose him, came in and asked what was wrong and what we should do about it.  Spoiled Princess said that her ear hurt and Mom said we could give a shot in the ear or two in the butt to fix the problem.  (Mom is nice like that!).  I also piped in with the thought that we could just cut it off.  Dr H agreed that we could do any of those, which would SP like to do?  She rolled her eyes at both of us and huffed that she didn't want to do any of those options.   Ha. We tried.

Once Dr H looked in both ears and reaffirmed which ear hurt, he decided that we needed to go to ENT.  You see when Spoiled Princess was around 3, she got tubes in her ears and she was still tubed in the left ear.  Dr H's theory was that right ear pain as caused by the tube still being in the left ear and not being able to adjust to the water pressure.

Off to ENT we go.  I called and made the appt- clearly stating that we needed to get a tube removed. Naturally they scheduled us with a dr who does NOT specialize in ear surgeries.  Imagine that.  So we had our initial appt, discovered that Spoiled Princess had mild hearing loss, a small hole in her right ear (the ear that hurt) and a much larger hole & retained tube in the left ear.  Yep, definitely needing surgery but of course we need to wait and have a consult with the actual dr that specializes in ear surgeries. 

3 weeks later and we finally see the dr we need who confirms that yes we need surgery.

1 week later and we are into surgery!

Boy oh boy was that rough!  Spoiled Princess did good and was so brave. She elected to get the IV and go to sleep that way vs the smelly gas. No flinching or tears!  Brave girl!   Surgery itself went well.  They put a paper patch on the tiny hole in the rt ear.  The left ear was more in depth and had a significantly larger hole which required a graft.  In order to see clearly,  the dr had to make an incision behind her ear.   I finally looked at the incision several days later and realized that it was pretty much an ear removal. LOL. That thing was hanging on just barely!

From tippy top to the bottom.

Waking up was pretty rough and some of her anxiety kicked in but once we got out of the hospital she was doing better.  Its now been 1 week since surgery and she's doing well!  She goes back next week for a check up but at least now she has a story to tell and a scar that no one will see  :)

It's been 7 hours and 15 days....

Quick, did anyone get the song reference?  I hope so because now I can't get it out of my flippin head!  Argh!  Sinead, please no more singing in my head!  Apparently, I'm showing my age today! lol!  Okay, it's really been quite longer since I've posted but it was catchy.   We'll just say it's been a while.  We've passed thru Christmas, New Years, and two birthdays.  Drama Queen turned 19 and moved back home (she's switching to a college closer to home and commuting this semester).  Southern Darlin' turned 11 and this was the big birthday. This was the year that she has officially been with us for more birthdays than not.   Some days it still seems crazy to me that she hasn't spent her entire life here.  She has wormed her way right into the family and it's not until questions about when she was a baby arise that I have to remind myself that we didn't meet her until she was 5.

Once again, I got to play mean mom.  I scheduled both girls for oral surgery over Christmas break.  What?? They were off school, why not?   Drama Queen got all four wisdom teeth out (the day before her bday... ooops) and she is super lucky and ended up with a nice case of dry socket as well.  Bonus!!  I was given access to her cell phone and given instructions to video tape her when she came out all goofy.  Sadly, she woke up and was fine.  I was just a tiny bit disappointed.  Southern Darlin', on the other hand, was enough laughter to make up for it.  She had 4 baby teeth pulled plus 3 exposures (where they cut into the gums, hook little brackets & chains onto the teeth that have decided to go completely sideways instead of down and hook the chains onto her braces).  Apparently she was not cooperative with the sedation.  She sat there just fine but would not go to sleep. Of course once they got her knocked out, she didn't want to wake up.  lol.  The dr came out and said he gave her enough meds to knock me & Daddy Chaos out.  Eeek!  That girl was all over the place.  Crying because she was scared (which was super sad), then wanting to sit up and just flopping all over.  She had double vision which she thought was quite hilarious and kept giving commentary. Blackmail, my friends, I have blackmail..

Thankfully both girls are healed up from oral surgery and we can finally *hopefully* move forward with Southern Darlin's braces.
 
We are all trying to adjust to being back in school.  We were supposed to start back last week from Christmas break and went for 1.5days but had delays & snow days (which technically were because it was cold as can be and no one goes to school in such --- temps).. Another closure yesterday but we finally went back today.  All these delays and closures are playing havoc on Dimples and his need to know what's going to happen next.   He did fine for Christmas break because we were able to count down how many days of no school.  Sudden changes in the schedule make for an unhappy kiddo.  Well that and the fact that he doesn't particularly care for school.  lol.  I keep hoping that one of these days he'll decide it's not half bad, but I am not holding my breath.. If you hate school in 1st grade, I don't see how it's going to get any better.. lol.

The Birthday Tree- seems appropriate for a Season of Birthdays...

December began the Season of Birthdays.  2 in Dec, 2 in Jan, 2 in March (4 if we count my BIL & niece)..  Life is busy and hectic this time of year.  And costly.  Life is definitely costly during the Season of Birthdays.  Along with birthdays come annual well checks.  Dimples & Southern Darlin' go to the dr every three months to get a med check (height, weight, blood pressure) so it's nice to see a little growth there.  What surprised me this year was that Southern Darlin' has finally left Spoiled Princess in the dust!  For years and years, Spoiled Princess was the bigger of the two despite being a year younger.  This year Southern Darlin' has finally taken the lead at 4'10.5" & 80lbs!  Woot ! Woot!  Spoiled Princess is 4'9" & 74lbs.  No wonder all the sweat pants/ yoga pants (Soft pants as Dimples calls them ) won't fit around her waist and just fall off.  Even more amazing is that Dimples grew 1 inch & gained 1 lb in the past 3 months!!  If you recall, this is the kid that has been tiny forever. He's not a whopping 39lbs & 3'9" tall.  Yeah, he's still a bit of a munchkin for a 6yo but hey, he's finally grown into 5T pants & size 4/5 shirts (not 4T!!!).  It's the little things, people.

I could write on and on about the IEP madness that is about to make me pull my hair out, or the thoughts of another surrogacy and random email I received, or Fishing Pole and his increasing anxiety issues which directly turn into behavioral issues..  But I think this is enough playing catch up for now.

Until another day...

Playing Catch up- Take 2

So last time , we talked about how Fishing Pole kept me busy with his surgeries.. And is still keeping me busy while he's still on restrictions..

I'm going to try to summarize because we can all tell by now that I am no good at sticking to a plan or this post would have been up last week!

The week following Fishing Pole's surgery was a busy busy week.   On Monday, Dimples had an appt with a Psych to confirm all of our thoughts/fear (pediatrician, us parents, & his teacher).  Dimples was diagnosed with Autism.  Techinically, Asperger's syndrome but as "they" are soon to be doing away with that term and just incorporating it all under the Autism Spectrum Disorder umbrella, we'll just say high functioning Autism.   In the future, I may refer to it either way.   :sigh:.  This is a diagnosis that we've felt was coming for years now.  He has so many classic autistic symptoms, I'm surprised it took this long to get it.   FYI- if you want to incorporate an autism dx into your IEP (currently has a speech IEP), the school (at least ours) states that they do not recognize a doctor's diagnosis of Autism..  WTF?  I can feel a new fight coming on..

On Wednesday, Southern Darlin' had an MRI scheduled for her Brain.. Just to recheck the cysts we'd found there the previous year.   With some great Momma conning, I was able to get them to fit Dimples in for his MRI at the same time (to check for tethered spinal cord).  I do love our Children's hospital in that they always try to accommodate if they can.

Since both kids were being sedated, Daddy Chaos took off work and came along. We split up , I went with Dimples, Daddy went with Southern Darlin'.   In reality, Dimples went back a few minutes prior to Southern Darlin' so I was able to be with each of them as they drifted off to sleep.  Our hospital uses general anesthesia for MRIs vs iv sedation.   Probably a good thing since Southern Darlin' was getting a brain & full spine MRI which lasted 4.5hours.  ugh.

S.D. still doped up from the MRI :)

Dimples making a silly face.. Showing off Ducky Monkey's gown that the nurses made..

Both kiddos did great and then we were off to Southern Darlin's neurosurgery appt.  I LOVE our neurosurgeon.  She did both of Fishing Pole's back surgeries and is very personable.

Good news- Southern Darlin originally had 2 small cysts in her brain.. The smallest one has disappeared completely! Woohoo!  The other one, the one we worried more about, has shrunk just a teeny tiny bit.  Woohoo!!  The Dr was thrilled to pieces!!!  We are free from MRI's for a few years now, she does want to recheck again during puberty to make sure nothing starts growing.   Awesome appointment!!

Since we were there, the Dr asked how Fishing Pole was doing (remember this is 1 week post surgery) and I mentioned that Dimples just had his MRI done to check for tethered cord as well.. She immediately said, let me just go check on that for you..  She came back a few minutes later and we just turned our appointment into one for Dimples as well.   Yes, he most definitely had tethered cord as well.  ugh.   We knew this was probably coming but it's still not fun.   Our Dr is amazing (have I mentioned that yet) and we went right into discussing surgery options ect.  She decided since Fishing Pole had retethered and she had to go higher up for the second surgery, she would like to just go at the higher spot to start with for Dimples and hope that he wouldn't retether..   We walked out to schedule surgery..

Imagine our surprise when she had room the FOLLOWING week!!  Egads!!  We opted to go ahead and get it done. Hoping that the sooner it was done, the less likely chance he'd have of long term issues like FIshing Pole..

Surgery went well for Dimples.  He is most definitely NOT his brother when it comes to surgery/pain.  While Fishing Pole had to be repeatedly told to calm down, walk carefully, ect.. Dimples had us carry him everywhere for about a week.  He was only in the hospital 2 days, thank goodness .. Immediately upon waking up from surgery , he wanted to GO HOME..He does not do well with strange people & places.. :(   Hello Autism, thank you so much... 


It's been several weeks since the boys both had surgeries.  While they are still on restrictions, they are doing better every day.   We have noticed a decline in Dimples at school. His teacher described him as "delayed" thinking he was on pain meds that were fogging his mind but alas, he's been off all meds for a while.. :sigh:


On a completely happier note..  We celebrated birthdays of 2 of the 3 boys!   Fishing Pole turned 8!! and  Attitude King turned 16!!!   It's hard to imagine that they have both grown so much!  Makes a Momma a bit sad seeing all her kiddos growing up :(

Stop growing already !!

Playing Catch up yet again...

I can't believe the last time I posted here was in January!  Geesh!  Life has been crazy and hectic and stressful and quite honestly - for most of it, I spent a lot of time in denial which means I couldn't write about it here if I was avoiding thinking about it myself.

Let me try to do a brief catch up..  ha.. I think we all know how I do things briefly.. lol.

2 back surgeries (different kids)
1 pacemaker replacement
2 MRIs (different kids)
1 new diagnosis
2 birthdays
and sadly, 1 old friend no longer with us.   Avoidance is my friend.   But we have gotten thru it all and for now, I think we have smooth sailing ahead of us.


Let's start at the beginning...

Fishing Pole has always had urological issues.  He's had surgeries (spinal cord and urological) and takes meds to help.. We noticed this fall that they were getting worse again.  He ended up having another CT to determine if his spinal cord had retethered.   Unfortunately, it had.  The decision was made to do another back surgery to untether his spinal cord yet again.  His neurosurgeon assured us how very rare it was for him to retether like this..  What can I say?  This kid is the definition of RARE. 

Tethered Spinal Cord --
Tethering of the spinal cord is a neurological disorder in which the spinal cord becomes attached to the spinal column via surrounding structures. Normally, the spinal cord hangs loose in the canal, freely moving up and down with growth, bending and stretching. A tethered cord does not move. It is pulled tightly at the end, reducing blood flow to spinal nerves and causing damage to the spinal cord from both the stretching and the decreased blood supply.
Tethering can happen before or after birth in children and adults; and most often occurs in the lower (lumbar) level of the spine. All forms of SB can be accompanied by spinal cord tethering; but it rarely occurs with Spina Bifida Occulta (SBO). In children, a tethered cord causes the spinal cord to stretch as the child grows. In adults, the spinal cord will stretch during the course of normal activity which like bending and stretching. If a symptomatic tethered cord (tethered cord syndrome) is left untreated, it can lead to progressive, permanent spinal cord damage.  Credit  (I should note that Fishing Pole has not been officially dx with Spina Bifida.  Due to his pacemaker, he cannot have an MRI.  He does have the Spina Bifida Occulta defect which was shown on a Xray).

When the discussion came up of doing another surgery, we were asked how his other health issues were.. Was anything else coming up that we could combine?   Actually his pacemaker battery has been low and we were checking it monthly, but his EP hoped to get us to the summer before replacement. Neurosurgery suggested combining the back & pacemaker surgery and doing them at the same time. One big surgery , one recovery..   The real question was- would cardiology be willing to work together?

We got the call the following week that Neurosurgery & Cardiology had come to an agreement on doing the surgery and we had a date less than 2 weeks away!   Eeek!!    We had definitely wanted the surgery as soon as possible because while doing a surgery to untether the spinal cord- it is to prevent further damage.  There is no guarantee that current symptoms will be corrected.  We cross our fingers and hope for the best.

Fishing Pole had his marathon of surgeries on Feb 17th.  He is my super hero.  This was #12 & 13 surgeries and he goes into it very matter of fact.  Laughs and jokes with the nurses.. No worries.  When I would ask him if he was concerned about the surgeries at all, he would look at me like I was crazy and respond " I will be ASLEEP when they do it, Mom.  Why would I worry?  I'm not going to feel it!" 

F.P. with all his surgery buddies..

First they did his tethered cord surgery , then they flipped him over and cardio did his pacemaker replacement.  We are super excited about his new pacemaker (still in the tummy.. ugh) because it came with the newest updates and services..

The Merlin @ home transmitter sits in his room and every night while he sleeps it reads his pacemaker to make sure there are no issues with the lead or battery..  Every 3months or so, it will send a full report to his cardiologist !  Since this boy has broken his lead twice already  and once we found out during a routine check, this technology makes a Heart Momma happy !!

Fishing Pole recovered quickly.  He has always had a very high pain tolerance. So our first night and following day in the hospital , he was quiet and doped up.  The second day he was bored and moody.. lol..  We spent 2 nights in the hospital and were sent home.  Keeping this boy calm and laying down was NOT fun..  He is still on restrictions until late April (no gym, no recess, both feet on the ground at all times -- no running, skipping, hopping, jumping ect).  at 2 weeks post-op the surgery scar (on his back) basically merged with his original one and is full healed.   His tummy/pacemaker scar is looking pretty good as well. Naturally it'll take a bit longer to heal because it's within easy access of picking fingers.. lol.

I think that's enough for today.. I promise to be back soon with more catching up :) 

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,

Sometimes a Fart just isn't safe..

**Warning- Definitely a TMI post **

Fishing Pole tends to have issues with constipation.. Ok, all my younger 4 do.  The GI drs once told us that it's common in drug exposed kiddos, something about the drugs can mess with the motility. 

Anyway, he's on miralax daily but still has a little bit of issue from time to time.  So with the surgery coming up, I decided that I should go ahead and up the dose a bit to help clean him out.  I knew with back surgery, pain meds ect he would probably be having issues going..

Thursday morning, I gave him  full capful instead of his normal 1/2cap. 

This morning, I got him up and told him to go potty before getting dressed to head to the hospital for surgery.  I reminded him to lift the seat, poke it down, change your pull up when you're done..  All the things I normally remind him up.

Apparently I didn't give him enough warnings.

I came back into the bathroom to see him standing there with this bewildered look upon his face.

" I farted and poop came out, Mom"

I can safely say that with 6 kids under my belt, I have never walked into a bathroom to find a kid half naked standing there with a pile of poop at his feet.  I burst out laughing hysterically..  Probably not the best response but the look was just priceless.

Apparently farts just aren't safe when a larger dose of miralax is given..

~*~*~*~

We are several hours behind schedule due to the surgery prior to us going long, but Fishing Pole is in surgery now and reportedly doing well.   He trooped off with the nurse walking beside him, Lumpy & Puppy safely tucked under his arms, into the OR..  At 6yrs old, he's an old pro at surgery.  This makes #9 after all.   We'll be hitting double digits next month with his tonsillectomy.  

I'll update when he's out and we have a room.

Thanks for your thoughts and prayers!

xoxo,

Fishing Pole likes rare ~ pt 3

To start at the beginning, click here for part 1 & part 2 ....


June 4th- Fishing Pole had his little boy bits surgically rearranged..  Dr Weinie , whom I like very much!,  went ahead and added a few more things while he was in there so the boy had 5 things fixed.

1. The accessory urethra was not removed completely.. It went well beyond the pubic bone so they removed it to there and then cauterized the crap out of it & left the remainder saying he shouldn't have any problems with it like that.  Apparently, had Dr Weinie felt it needed to come out completely, he would have had to break Fishing Pole's pubic bone in order to get to it.. So yeah, I'm happy he stopped where he did.

2. There was some significant curvature ( peeing in his own eye.. lol), some was fixed once the extra urethra was removed but not enough so there was some straightening which involved stitches pulling it down and by now I was sitting there with my fingers in my ears saying "La, la , la la"   ok, not really but I wanted to be..  Dr Weinie is very graphic and detailed in his explanations.. The only good thing is I can repeat the story to any male alive and have him cringing within moments.. lol.

3. The end of the hose didn't have quite a big enough opening, so Dr Weinie then decided to split the tip and sew it partway back up..  Ouch.

4. Remember the odd little thing at the opening of the bladder?  They decided to stick a camera up his urethra to investigate it.. Apparently he had a bunch of partial valves which they burned off..

5. Now that all the surgical stuff was done, he went ahead and re-circumcized the boy to fix the botched job from when he was itty bitty.   I don't even want to give real details on the surgeries b/c I just ate and my stomach is already rolling a tad just writing what I have.. lol.

Needless to say, there were A LOT of internal stitches.  Joy oh joy, due to the pacemaker and interference w/ the good type of cauterizing , Dr Weinie had to go old school which causes more pain & more swelling..  Sorry dude..  He also didn't get to have an epidural  (which is what they normally do for these types of surgeries) due to the spinal abnormalities on the CT & we hadn't seen the neurosurgeon yet.  Which meant he instead got some morphine in the hospital and was sent home with some heavy duty Vicodin (in liquid form).. The surgery was outpatient.   FUN.

He spent a few days in a little bit of pain and a week or two where it hurt to pee.. The only good we got out of it was that he actually felt when he had to pee b/c it hurt.. Unfortunately once the pain went away so did the feeling and we were back to wet pull ups.

June 12, we went to see the neurosurgeon.. She agreed that it could be tethered cord and recommended surgery.  Things didn't look as bad on the CT as we were previously led to believe but she still felt that surgery would help.   We were sent home with a surgery packet and told to think it over and get back with them.

We waited a little while because at the time of the appt, he was still having pain with urination and able to feel it so we were hoping that would last.  Fishing Pole is finally at the age where he's embarrassed about wearing pull ups. He does NOT want to go to 1st grade still wearing them but at this point they are a necessity.

This week, I finally pulled up my big girl panties and called to make an appt for spine surgery.  The earliest appt wasn't until Aug. 6 which is mighty close to school starting but we took it anyway.

Imagine my surprise to get a phone call the next day to be told that there was a cancellation on the schedule due to an all day surgery patient getting MRSA  (poor thing!!) could we make it for surgery on Friday?   This Friday?  Yes.   okay.. 

 And that is how you find me completely stressed and running around trying to figure out what I need to pack for this 4day hospital stay to keep both Fishing Pole & myself entertained..  Trying to figure out what to do with the rest of the kids so Daddy Chaos can be there as well.  Trying desperately not to think about the upcoming surgery in which the surgeon will cut into my kid's spine..  I've done heart surgery after heart surgery but flip him over and work on the back makes  me worry with all kinds of new worries..   I know things will be fine and I pray this helps him and isn't for nothing.

Think of us tomorrow.. We'll need your prayers. 


**Side note- don't forget about my book Giveaway!  Go enter ! Just do it ! :) It will help my stress levels tremendously.. :)

xoxo,

One less useless piece

Fishing Pole (omg I have such a hard time with that name- I keep writing Drool Prince) had surgery last week..

Yet again.

It was just his adenoids this time. But we had to go to the Big Hospital because blah blah blah- taking out adenoids the normal way while having a pacemaker implanted = no go. 

Incidentally, I was nice (with ulterior motives- I'll get into in another post) and txted his birth-uterus.  I don't talk a lot about the kids bioparents much on here.. I guess I don't really have much to talk about.  We have communications open (ie. they know my cell & po box & also know that if they want contact they have to initiate- I am not chasing them down) with all the birthparents but 1/2 don't choose to use it.  Birth-uterus is one of those.  After not hearing from her for 2yrs, she texted me out of the blue this winter.  We shared several texts that day and I got my hopes up that she was changing and starting to show an interest.  On that day, I promised to keep her updated on any medical stuff coming up with the boys.  So I held to my promise and txted her a few quick txts letting her know that he had surgery, what it was for & that everything went well.  I waited for a response..  and waited.. and well I'm not waiting any longer but I never got one.  I know she only contacted me this winter because biodad bugged her (from prison) that she needed to have an interest in the boys.  Funny that he knows more about them when he's locked up.. But hey he puts in the effort..


Ok, how did I even get off on that tangent?? I have no clue..

Anyhoo- due to Daddy Chaos being off work due to back issues the entire week prior to surgery, he couldn't take off the day of.  So it was just Fishing Pole and I..

We got up before my party animal/ insomniac nieces were probably even in bed.. We had to travel 2 ½hrs and be there at 5:45am. 

Needless to say,  Fishing Pole stayed awake the entire way down.. chattering the entire way.. lol. 

We got there, got settled into our room & started finding ways to entertain ourselves..  We took pictures.

Let's start with The Stare..  I have no idea what he was doing.. I told him to let me take a pic of him in his hospital outfit and this is what I got.. ha!

Just like almost every other surgery/procedure, we brought our best pal Lumpy with us.  The nurse was nice enough to give Fishing Pole an extra pair of socks so that Lumpy could match :)   I <3 nice nurses.

 I had the brilliant idea..  Let's take pictures together!  You can see how well he cooperated.  I said, Smile pretty Fishing Pole.. This is what I get.. Sheesh!

 And then the Child Life Specialist came in (a first for us) and let Fishing Pole make his very own mask to use when he went to sleep for surgery. He got to choose his favorite chapstick scent and maybe got a little carried away with the raspberry chapstick (see excessive pink inside mask).  Then he got to pick which face stickers to put onto his mask.  It was actually pretty fun.  It's meant to help take away some of the anxiety that kids sometimes have when going into surgery.. Fishing Pole has done it many times and normally isn't the least bit anxious..  But he enjoyed making the mask & getting to bring it home :) At least it was something new to do, right?!

And then the sleepy dr came in.  She gave us the normal spiel about anesthesia and asked if we wanted the versed that we normally have.  After going back and forth for a minute, I decided to go ahead and give it to him.  He has had it every single time with the exception of the surgery @ 3months old.  It normally makes him a little more prone to giggle but also assures that he doesn't get too upset when leaving Momma.

This time, however, the boy got downright stoned.  I'm not sure if she gave him a higher dose or he's just metabolizing meds differently now but Wowsas!!  I actually videotaped him b/c he was sooo goofy!  If I can figure out how to put it up, I will.. Sooo funny!  The pic is him "smiling" for a pic.. lol.  Poor baby. 

And then away he went.  Down the hall that I know so well and back into a room that I've never seen but he has seen many times.  It seems weird to me that my child has been somewhere that has such an impact in his life, somewhere I've never been allowed entrance.

Surgery went smoothly.  Adenoids were obstructing his airway by 50%!  Guess it was a good thing we got those pesky things taken out !

Dr Heart met us down in recovery to check the pacemaker and make sure everything looked ok with it.  Good news is that everything looks good! It's working!

Not as good news is that his heart rate seems to be trending lower and lower.  He currently only uses his pacemaker about 1% of the time because it only kicks on when his heart rate falls dramatically and is at risk of pausing.  There are talks of possibly upping the rate of his pacemaker since his heart rate is now lower overall than it really should be and not just during episodes..  We shall see..

So then finally, it's time to go home.

Home again, home again... jiggity jig..

Here's hoping that we don't see the inside of the surgical waiting area again for a nice long time!

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,