Here We Go -- AGAIN!

Who was it that ever said, "Third time's a charm"?

We are back in the hospital today for the scheduled two week staple removal and cast change.  Because of his age and some discomfort and fear he might experience, Aidan was scheduled to go back into the O.R. under general anesthesia to get these things done.  We are thankful for that.  I can't imagine having him be awake while getting his cast cut off, then trying to keep him still and stable while getting 15-plus staples removed, and then having him tolerate re-casting.  They say that there is a special spica cast table that they have to balance them on when they are placing this type of cast. I think anesthesia is a blessing for everyone involved at this point.

That having been said, Aidan had a much more difficult time coming out of anesthesia this time.  He was pre-medicated with Versed again to help him relax (something he didn't need on the 17th for the second rotation and casting because he still had the original I.V. in).  Because the procedure was fairly short, (about 45 minutes) the Versed was still working when he woke up.  Let's just say, Aidan on Versed pre-op--funny.  Aidan on Versed post-op--not at all funny!  He was more upset than either one of the other procedures by far.  In addition, he was a little nauseated and his leg was hurting.  They are so awesome here about getting right on top of all that, though.  The nurses worked really quickly together to get him the meds that he needed to help him start feeling better.  It still took quite a while to get back to being himself.

After working on this post in tiny bits all day (seriously, since before he went to the pre-op holding area!), we are finally home after a much longer than expected day.  We had a few difficulties taking care of some tight spots on his new cast as well as finishing off all of the edges before we left.  All-in-all today was a huge reminder of how easy our first six days were in the hospital.  Aidan did still get to go on some wagon rides that he was really looking forward to and also enjoyed playing with toys in the play areas both before and after the cast change.  Does it get better than that when you are two?  Oh, and he got to eat ice cream.  Twice!!!  Thanks for the tip Mason!   

Getting Caught Up

Our last 24 hours in the hospital was busy.  Since we came home it has been even busier!  Let's jump back to Friday afternoon and get all caught up slide-show style.

It had been a couple of days since Aidan had had a bath.  Between being in bed, being painful after the final leg procedure, taking pain medicine, and recovering from anesthesia, Mr. Sweaty-Boy wasn't smelling baby fresh.  His C.N.A. for the day, Asiel, got everything set up and helped us give him a bath.  He had a great time playing with the bubbles from the shampoo.

I've got bubbles on my nose!

Once he was nice and clean we decided it would be good for him to spend some time out of bed.  He seemed to be feeling good.  I picked him up and realized that this was the first time in almost a week that I had held him upright like normal and given him a regular hug.  That felt really nice.  He enjoyed looking out the window at the city traffic for a bit and then we decided to get out of the room for a while--regular kid style. 

Feeling a little more like normal.

Hanging out with Daddy enjoying the view.

Before going home from the hospital there is a short list of things that need to be taken care of: pain under control, keeping down fluids and food, tolerating taking medications, plus a few other important things.  Let's just say that by mid-evening we were fairly certain that we would be taking our little guy home the next day.

Mission accomplished! 

After about an hour and a half playing with toys in the activity room and another stroll around the unit in the wagon I figured that Aidan would be ready to turn in early for once this week.  Mr. Alan was Aidan's nurse for his last evening in the hospital.  He really likes to play with kids!  It's so fun to watch!

Mr. Alan strikes again.  "If I give him these glow sticks, do you think it will keep him awake?"  "Nah!"

Once asleep, Aidan slept well through the night and got the okay for discharge early the next morning.  As with any hospital discharge, there are always quite a few things to be done before you can actually go home.  You can see his 180 foot in this picture pretty well. 

One more movie while Mom and Dad pack up

When we were finally ready to head out, we let Aidan play with the house that he likes in the play area for a little bit just to make sure to end his stay on a good note.  Apparently, his whole stay was a "good note" because he didn't want to leave. 

Funky!  How does he manage to sit like that?

The first thing that Aidan wanted to do when he got home was to play with his toys.  He started with Playmobil and made his way around the living room from there.  Within the course of two hours the room was a wreck!  We know who the primary living room messer-upper is!

Home is where your junk is.

He also surprised us by beginning to move himself around much earlier than we would have guessed.  We figured that we would be moving him around the house for the next week or two.  Instead, he was rolling from one place to another almost right after we got home!  By the evening, he was attempting to crawl at times and had been "knee-standing" at the train table to play.  The next day he figured out crawling and isn't having any difficulty getting where he wants to be at this point.  Did anyone say, "activity restrictions"?  I don't know how we would get that across to him!  Two days ago he was discovered climbing up the slide and was taken down, then was brought inside after he was found near the top of the ladder to the playhouse.  Thankfully, Kipper the Dog cartoons are a good distraction!

Playtime with Tierney

The cupcake chef hard at work.

King Kong has got nothin' on this kid!

Since coming home, Aidan has been a bit more fussy and crabby than he was in the hospital.  We are trying to find the right mix of play, medicine, movies, and sleep.  Thank you, again, to all who have kept him in your prayers!  And THANK YOU to those of you who have generously brought us meals!  What a blessing you all are to us.

The life of leisure.

 

In and Out

Aidan slept well last night. He was off to the holding room at around 7:10 this morning and then to the O.R. at around 7:30.  Another prayer answered!  They were able to complete the rotation and didn't have to place a pin in it.  A new cast was placed as well.  All of this between about 7:50 and 8:30.  We were in post-op at about 8:45 a.m., back in the room at about 9:45 a.m., and now Aidan's drinking a smoothie at 11:40.  Easy-peasy. 

Oh boy! A train!

Stickers! What kid doesn't love stickers?

Here we go again.

Back to Mommy.  That makes it all better.

Doctor Dogg Does Rounds

Thursday afternoon brought a special visitor. Aidan loves dogs.

Hey, have you met my friend, Buddy?

 

Yuck!  Now the dog's going to need another bath.

Since Aidan was acting more and more like himself and we knew he would be going back to the O.R. the next morning, we decided to "live it up" a little.  After an errand downtown, the kids and I (Shannon) picked up some dinner and a special treat.  One of Aidan's favorite games at home is pretending to cook cupcakes (and then you have to pretend to eat them afterwards, of course).  He will rope anyone into this pretend play that he can.  It's amazing how many batches of cupcakes that boy can whip out on any given day!  After another wagon ride (a very popular activity) and dinner as a family, we brought out the miniature treats. "CUPCAKES!!"  He hadn't wanted to eat much today but he had no problem putting away a couple of cupcakes and frosting.  Can we get you to chase that down with some milk at least? 

Okay, we're ready to roll!

Cupcakes!  Awesome! What are you guys having?

Aidan's hand post cupcake-cram.

Time Set for Friday

We've been waiting to find out when Dr. Krajbich will recast Aidan's leg.  As previously mentioned, they weren't able to get the full rotation they wanted on Monday.  So in addition to recasting, they will try to get the remaining rotation tomorrow morning at 7:30 a.m. 

We've been told that they will not have to open up his leg to do this, but will rotate the leg around the metal rod that runs through his tiny femur and into his tibia.  They might either pin this all in place, or just use the cast to hold his leg in position while it all heals.  We'll find out after the fact tomorrow, as they often decide how to proceed surgically "on the fly."

Invasion of the Manhamsters!

Moira, Keegan, and Tierney visited this morning.  Seeing his brother and sisters definitely seems to make Aidan happy.

Can you see my hand?

Movies with Tierney

Moira helps with oral hygiene

Bubbles!!

Mr. Alan visited unexpectedly yesterday evening with bubbles!  The good ones that last!  There were bubbles everywhere. 

Shannon said she found one (a bubble) this morning. Housekeeping's not going to be happy.

At least it isn't Silly String

Everything's better with bubbles!

Wagon Walk

We finally got up and about yesterday.  They have a great big wagon here for wagon walks, so we went for a walk around Shriners, visited Debbie in prosthetics, saw Sabrina and Todd, smiled at people, and "boo-ed" a man in the halls. Aidan's feeling better.

Living in the lap of luxury

A Present from Mason

Mason Scheiwe, who also has had rotationplasty for PFFD, and his family sent Aidan a present yesterday--cars, a movie and stickers!! Big thanks to the Scheiwe family.

Thank you, Mason.

Back to Business

We've spent most of the day Wednesday trying to keep Aidan entertained, and while he's not having any pain at the surgery site due to the epidural, he's getting cranky about the tape on his back and the edges of the cast.  Shannon and one of the nurses put moleskin on the exposed cast edges, and retaped some of the areas that seemed to be causing the most irritation.  He seemed fine after that. 

It is getting a little less cumbersome to move him around.  They we able to remove the wound drain and also saline locked (capped) his I.V. so that he doesn't have the tubing hooked up any more.

His appetite is back, too.  He had one of his favorites (smoothie) and a fairly decent dinner. 

Tomorrow, the other kids will visit again. I think it's been difficult for them being away from their little brother. 

 

Surgery Day--The big leg flip

Monday morning, June 13th, Aidan had Van Nes Rotationplasty surgery on his "little leg".  Aidan is doing great!  Everything went better than we could have hoped.  He wasn't afraid at all and was his charming little self like he is almost all of the time.  Thank you to all who have been praying for him and for us.  Even mom and dad did better than anticipated.  We can attribute this to the prayers from so many family members, friends, as well as strangers that have been offered up on our behalf for the past two and a half years.  Please continue to keep us all in your prayers as this is the start of a new journey for our family.

We wanted to share with you some of the highlights of the day.  The next chapter begins...

One last Bob the Builder movie before we leave home.

                               

7:00 am  --Checking in. What a miracle!  Despite leaving the house a few minutes late and waiting in traffic for a bridge lift  on I-5 we made it to the registration desk a few minutes early.  Aidan was immediately delighted with the view from his room looking out over the city. He spent the first 2 1/2 hours in the hospital in the window sill watching the cars below and playing with his toys, his parents, and the staff.

Oh, look, cars!

                                                                              

What a view!

Daddy needs some Versed, too.

9:40 am  --The pre-op medicine.  We had been told by a mom of another little boy about her son's response to the oral Versed routinely given to help calm and relax kids before surgery.  It is very bitter even when mixed with a sweet syrup.  After having the medication at the beginning of his hospital stay he associated all medication syringes for the rest of his stay with the first one (which was to him strongly repulsive).  This made giving his pain meds and everything else quite a bear.  Knowing this, we played the "time to take your medicine game" while we waited.  Aidan would give us (and anyone else who dared to venture into his room) our medicine with an empty syringe.  After accepting the imaginary elixir we would scrunch up our faces and say, "Yuck!", or something of the sort. Then we would say, "But I need to swallow it!". After a pronounced "GULP" we would then admit, "Oh, I feel much better now!".  Aidan followed through with taking the real medication like a dream!  He swigged it right down, said "Guck!" in a playful voice and then followed it up with, "I feel better now".  Let's just say that before long he was feeling really good.  He had a blast pretending that the warmers on his hands were Buzz Lightyear.

Before Versed

I think I'm feeling kind of funny.  LOOK! Buzz Lightyear hands!

"COOOOL" -- Hello Versed!

10:25 am --Letting him go.  After a short time in the holding room upstairs it was time for last hugs and kisses.  Aidan went to the anesthesiologist's arms without a fuss.  Another answered prayer!  We knew that in a few short minutes he would be snoozing.  After he was asleep his I.V. would be placed, lab work drawn, and epidural placed.

One last kiss.

10:55 am --Surgery starts.  The next best thing to being with your child during something hard is knowing someone who is.  Knowing their work habits, heart, professionalism, and compassion.  We were blessed to have a former co-worker of mine working with Aidan in the operating room as the circulating nurse.  Everyone here at Shriner's is so great, but this was just the personal touch that this mommy needed.  Knowing he was with someone that knew who he was since the day he was born gave me (the one usually being the nurse) a calming reassurance.  Thanks, Beth!!!

A visit from Beth at the end of the day.

3:15 pm --Surgery is done.  After keeping us very well informed of the progress being made via regularly phoned messages, Aidan was on his way to the recovery room.  Thank you Jodi and Bob for keeping us company during what could have been a very long four-plus hours!

3:45 pm --Big owie!  We were able to go into the recovery room pretty quickly.  Aidan's nurses Katie and Nan had been keeping busy managing his pain and nausea.  He was still having pain when we got in there.  The first thing that they did was to put him in my lap for mommy comfort.  I don't know who felt better, him or me.  Within ten minutes he was relaxing from the effects of the I.V. nausea and pain medicines as well as an increase in his epidural medicine.

Finding comfort in the ones we love.

4:45 pm --Back to our room.  That pretty much says it. We both held our sweet boy for two hours each after getting back into our room.  The angle of his spica cast (up his left leg and around his body) and the multiple lines and tubes (I.V., epidural, BP cuff, 2 pulse oximeters, a wound drain, and bladder catheter) made it a little tricky to pass him off.  That was a three person coordinated effort. What a relief to have him back in our arms though.  Aidan was sleepy, as would be expected, but had his same sense of humor.  He would occasionally "eat" our noses, fake sleep, and snore.  At one point he suggested, "We get out of here--go to Dutch Brother's?".  The kid really likes his smoothies!

Mommy time

Daddy time

The look of that foot is going to take a little getting used to.  We think that we should get him a t-shirt that says, "Hey, it IS fixed!".

The Short-term Plan --Because of the severity of Aidan's shortened femur, Dr. Krajbich was not able to rotate his leg as far around as would be desirable without risking a dangerous decrease in blood circulation to his leg.  We knew from the beginning that this was a possibility.  He will go back to the operating room Friday.  After removing his temporary cast under anesthesia, they will then try to rotate his leg the rest of the way, possibly put a pin in it, and place a new cast that will stay on for six to eight weeks.  We are really hoping and praying that they are able to get the optimal rotation desired so that being active will be as easy as possible for our little guy.  For now we will try to rest when able, see our other kids, and keep a casted two year old on bed rest entertained.  They say you watch a lot of movies!

Here We Go!

This morning is the start of the new normal for us...whatever that looks like for a while.  After a short rest we will wake Aidan up earlier than ever before.  By 5:30a.m. he will have been scrubbed down twice with Hibiclens (a disinfectant soap) and have had as much apple juice and water to drink as he is willing to hold.  Do you remember what it is like to plan a trip far in advance, or to be standing up at high school or college graduation after being in school for what must have been always?  Then you think, "Wow, is it really here already?".  That's what this feels like.  We will be on our way to Shriners Hospital in the morning for Aidan to have the Rotationplasty surgery on his leg that will create a "knee" from his heel to enable him to use a prosthesis that will allow him to have somewhat more normal function.  We are so blessed to live this close and to have him in the care of people that are so familiar with this procedure.  We hope that this blog is a way for all of you that love and care about Aidan to stay up to date on how he is doing and how he is progressing through his adventure.  Keep him and our family in your prayers.