Thursday, August 20, 2015

Pre-op from post-op

Seven months.  That's how long it has taken me to actually sit down and write about the surgery experience.  The whole thing is almost out of body.  It takes a while to sink in, like, "did that just happen?!?"

Quick catch up - I have a kid.  Her name's Lydia.  She has a short leg.  The doctors told us, "Amputate, create a nice stub for a prosthetic and go about your lives." We said, "How about, no.  My kid's still in utero.  That sounds a little extreme."  And now we have chosen to travel two time zones, six states, and  many worlds away from Albuquerque, New Mexico to West Palm Beach, Florida to one of only a handful of doctors that could possibly touch her - short of amputation - without causing almost irreparable damage.

Except it's much more complicated than just a "short leg".  And to say there are a "handful of doctors" is overestimating.  There are two.

I digress.  In January of this year Lyd went in for her super hip.  I can't even explain to you what they did, except that she didn't have a hip joint and now she does.  It's complicated.  Anyway, we went down to WPB (West Palm Beach) a few days before surgery day to hang out, get settled, and do the pre-op appointments, tours, etc.

It never really hit me what goes into making a kid feel comfortable in a hospital.  Lydia has always been very "go with the flow" and she's only two at the time, so I didnt do a whole lot in the way of "preparing her" for what was about to happen.  The hospital did a great job, though.  This was not their first rodeo.  Paley's kids have the entire third floor of the children's hospital at St. Mary's. (Except PICU.  more on that next time.)  We had a nice lady named Brittney call me before we ever got on the plane to WPB to make arrangements to tour the hospital.  Brittney was perfectly blonde, smiley, sweet, and kind.  This sounds vain, but you really want a pretty, smart, patient and smiley girl to walk you through the hospital the first time and tell you what will happen when and why.  Good hiring choice.

At the end of the tour, Brittney gave Lydia a medical kit.  My mom had gotten Lyd one before.  If anyone plans on their kid spending time in a hospital, the medical kits are a must.  Just a little piece of advice to stick under your hat.

Now to the morning of the surgery.  Check in and pre-op were super early in the morning, which is great because your kid hasn't eaten or drank in 12 hours.  They can be a little cranky.  Its best that they sleep though most of that.  Back in pre-op was this lovely lady named Flo.  She RAN that joint and did not apologize for her running a smooth ship.  That being said, she was lovely and kind too.  I had to wear a paper gown to take Lyd back to the operating table and Flo brought us markers so that we could color the paper gown to kill some time before donning the thing.

I've read many renditions of prior parents going through this and I never really knew what pre-op/surgery/anesthesia was like.  Well, in short, they gave Lyd an oral mediation, which kind of made her sleepy.  Once they were ready for her to go back into the operating room, they lay her on the crib, raise up the crib bars, and roll her back.  I got to go with her, walking beside the bed.  She was drowsy, but not asleep. (Side note - there are nurses there that do NOTHING but watch your kid while they are on that table.  Their job isn't to help the Dr or get a scalpel.  Their job is to watch your kid.  You will beg her to take care of your child.  She will.  And you will never forget her face.) When we walked into the operating room, I was struck by the brightness of the lights and silver of the utensils.  I sucked every tear back into my eyes - and it was a good decision.  Lyd just went along for the ride.  She took her cues from me and smiled all the way to the operating room.  The nurse transfer Lydia from the rolling bed to the operating room table and put the gas mask on her and Lyd is out in under 15 seconds.  I was (very) quickly ushered out of the operating room and found myself back in the waiting room.

Where we waited for 8 hours.


Thursday, February 26, 2015


We have been back from Florida for about 5 weeks.  Lydia is on her seventh week post super hip. I just wanted to write a quick blog-post to document and let other people know some of the changes I've noticed since we've been back.  Are they due to her surgery?  I have no clue, but they didn't show up until now.

Words:  Lydia talks.  alot.  It was almost like she got out of the hospital and started talking like a full grown person.  She speaks multiple word sentences.  She has an outstanding vocabulary.  She understands "in the past" vs. "right now", she can count apples, and she pretty much uses all parts of speech in her sentences.  (I'll ask her if something hurts and she will not only tell me what part of her leg hurts, but whether it hurts right now or in the past.)  I can't explain it, but her vocabulary and ability to talk is crazy and literally started once we left the hospital.  I spoke with a speech pathologist who tested her and she tested at the 3 year old level for cognitive and speech skills. The Speech Pathologist said (and it makes since) that since Lydia was restricted in her motor growth that she had no choice but to burst out in the cognitive sphere.

Stuttering:  She has also started stuttering.  Just in the last weeks.  I think that there is a little stammering in both my and Paul's families - all of which was outgrown - but still something to note since the interwebs say that it can be caused by trauma.

Nightmares:  I am pretty sure that Lydia is starting to have nightmares.  Nothing horrible I dont think, but she has been a great sleeper for the last year and only recently started wimpering in the middle of the night and screaming.  I'll ask her if she hurts and she says no.  Many times she is still asleep when I go in to see her and make sure she is okay.

Pretending:  One thing is for sure - The girl can make-believe.  The Cashes all have a wonderful ability to make-believe/pretend, so maybe she is just coming into a great part of her birthright.  It might also be tied to the cognitive jump - I don't know.  I just know that hide and seek, pretend fruit picking, princess play, and playing "Super hero" are some of her favorite new post-Florida play activities.

Acceptance:  I didn't know what else to title this part.  Lydia has a fighter's spirit.  It's been evident since the beginning, which is good considering what her life will look like for the next few years; however, Lydia has recently began accepting what she cannot fight.  It's both a good and bad thing, I think.  I don't want her to ever stop fighting, but I also don't want her to fight against something that . . . (I dont know what words to put here.  I hope you can get my feelings though).  Example:  long story short, Lydia had to have two staples put in the back of her head (yes, while she was casted.  parents of the year, I know.).  We told her their would be two staples, really quick. Lydia fought and cried as the Nurse Practitioner held her down and stapled the back of her head.  The second staple misfired. Lydia lost her shit.  I asked Lydia to look at me.  She did.  I told her that we had to do one more staple.  Lydia looked at me with that two year old ire and put her head down - voluntarily - for the second staple.  Don't get me wrong, she was crying.  Yelling.  She didn't swollow her emotions, but she did what was asked of her without a fight.  Part of me thinks that this trait will be a defining awesomeness of her in many years to come.  In any event, I add it because it wasn't a thing and now it is.

If any more come up, I will add them.  Everyone in the PFFD/CFD blog-osphere seems to talk about "changes", without any real specifics.  So, here are ours - all in one place.

Wednesday, January 14, 2015

post op day 1

Here we are, more than twenty four hours post surgery.  My child is a mother effing beast.

The super hip surgery was a definite.  We all thought that the super knee surgery was a given, but frankly Paley doesn't make that decision until he gets into the operating room.  Lyd did not need the knee surgerybecause it is stable.  That is awesome.  I would have utterly lost the "do we have super knee surgery" bet.

Lyd did have a blood transfusion and was under anesthesia for, like 7 hours or something like that, so we spent last night in picu.  Today we got moved over to the pediatric orthopaedic floor.  Lydia had in her epidural still and will for a while.  They stopped the meds in the epidural for a period of time today and that wasn't fun, but like I said my child is  a beast.  Her temperature has risen a few times today, but that's to be expected, but it still sucks.

We have watched Tangled no less than four times today.  Tangled is the new Frozen.  Tell your friends.  It's going to be the newest "throw back" sensation.

No pictures this time because I'm updating this on a kindle.  Please excuse spelling and grammar errors caused by writing a novella on Swype.  I'll try to get some pictures soon and update when I have more to say than "today was less than stellar, but it's cool cause by God is great and my daughter Is a beast"