Posted by: craig and melissa | January 5, 2015

Hip Surgery 3.5

From C:

The surgery is over, the “rough” awakening has subdued, and a peaceful Connor Boy is softly snoring in his bed as I type this.  Hopefully the pain and the nurses’ activities won’t wrestle him from his peaceful slumber too often throughout the night.

Things went very smoothly today.  Connor was not very anxious while in the pre-op room, and pastor Richard did a wonderful job of distraction while Melissa and I got the usual run down from nurses, anesthesiologist, and Dr. Laine – his surgeon.  Those two are a riot together, and I’m so thankful that Connor has taken such a liking to Richard over the years.  What a gift he is.

Connor and I went back at 8am to the OR.  He’s such a brave little man.  He just about floored the nurses and anesthesiologist when he voluntarily crawled onto the OR table without any prompt.  I think I was the only one who had an ounce of angst present in the room!

1506782_10105588625426780_6465776611813101874_nHe did worry a bit when the gas mask violated his personal space.  But, once that started to take effect he was out for the count.

We received a call around 9am that they had finally finished all the prep work for him on the table and began the surgery.  7.5 hours after he was sent back to the OR, we received the call that he was finally done.  Gillette’s (like just about any other children’s hospital) does a really great job of calling parents almost every hour or so to give updates.

We met with the doc as they were finishing up the spica cast.  She commented on how things went very well.

Here’s what she did:

She went ahead and removed the hardware that was already in his leg.  Then she did the lengthening of the adductor – which is essentially lengthening the groin muscle.  Next was the proximal femur osteotomy revision – which is breaking the femur near the “ball” and revising the angle so that it fits in the socket better. A plate was put into place that will allow the bone to heal in that new position.

Both of those procedures had been done the last time.

Next should have been doing the hip capsulorrhaphy – which is cinching up the capsular tissue of the hip.  Instead she consulted with the head of orthopedic surgery, and they conferred that rather do that procedure she should go ahead and make an adjustment to the actual pelvis itself.  I can’t remember the exact name of the procedure, but she essentially bent the pelvis more to help really define the socket pocket.  She had to ask consent, of course, in order to change the procedure mid-surgery and we gave it, of course.

The only thing she skipped was the calf muscle lengthening.  Already lots going on, and we all agreed in pre-op that if there was one thing that could wait for another time, it was that procedure.  So, that will be done on another day and is rather low on the priority list.  No worries.

The good news out of all of this?  Well two things – 1) Everything looks great and that adjustment made to the list of surgical procedures has a strong chance of benefitting him in the long run.  2) Because the capsulorrhaphy was not done, the spica cast only needs to be on for 4 weeks! Wahoo!  Those two less weeks are huge! Thank you, Jesus.

They put the cast on him – BRIGHT. ORANGE. – and I met him back in the PICU while he woke up.  A cranky boy at first, but hey who wouldn’t be?

IMG_2415Ironically, the nurse found a video of Daniel Tiger which was an episode of Daniel Tiger getting ready to meet his new baby brother or sister.  Funny.  The nurse had no idea Melissa was pregnant.  Let’s just say Connor’s attention steered away from the pain of post surgery to what that new baby brother or sister would be like for Daniel Tiger. (It was a sister in case you are wondering)

This evening has been a little up and down.  He’s very cranky at times and essentially just needs lots of TLC with a side of pain management to go with it.  He’ll be just fine in a day or so.

Our return home will be more than likely Friday.  In the meantime, Melissa and I are splitting shifts.  I’m spending nights here until late morning when Melissa will come to relieve me.  I’ll go straight to work and then straight back to the hospital after work.  I won’t even see my own house until Friday night after Snowflake tech.

If you’re wondering about that title, this is indeed his 3rd hip/leg surgery. The .5 is from when he needed to go in and be sedated to do a cast change.  We’ll be glad when all of this hip stuff is behind us.

If you are in the area and want to offer help.  Great!  Send lots of love and prayers for this brave brave little man.  If you aren’t in the area and want to help too.  Great! You can do the same thing – send lots of love and prayers!

We thank all of you for being such wonderful family and friends in keeping all of us in your thoughts and prayers over the last 24 hours.  That outpouring of love is such a testament to the beauty of the human race can achieve.  What a gift.

We’ll keep you updated.  You’ll probably hear from us again when CB is back home and learning new ways to torment the dog while in his bright orange cast.

Blessings and love to you all.

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Posted by: craig and melissa | January 4, 2015

When I Hip, You Hip, We Hip

From C:

Wow, it’s been almost two years since the last entry in this blog.  Far too long.  Sorry about that. :/

I’m not sure how many are still subscribed to this sucker, but, Melissa and I felt it was important to update with a bit of news.

Connor will be having surgery on Monday morning (yes, that’s just mere hours away) over at Gillette’s Hospital in St. Paul.  He’ll be there for the next few days, maybe until Friday, recovering from orthopedic surgery on his left leg and hip.

For a bit of context, let’s rewind the clock back to late April of 2013.  Connor went in for surgery on his left hip and leg.  From xrays, his ortho doc could see that his hip and femur were not forming a very good “ball & socket.”  That spelled trouble for Connor’s future as he continued to grow and, what is currently mostly cartilage harden into bone.

The procedure was a brutal one – the doc bent the hip to form a more pronounced curve, and he broke Connor’s femur close to the hip and bent his in that part of the leg so that the angle was at a more preferred angle to the hip socket – this also would make his left leg a little shorter than his right (DOH!).  A plate was screwed to his leg to set the bone while he recovered and grew.  The surgery was a success and imaging showed that things looked good post op.

CB spent the next six weeks in a spica cast while he healed.  Imagine your legs being frozen in a frog position for the next six weeks.  Then try and imagine getting around.  Yeah, that’s not going to work out too incredibly well, is it?  We had to change carseats to accommodate the big cast.  Connor couldn’t sit in a regular chair.  He couldn’t sit up, he couldn’t really fully recline either.  Everything about his daily life was modified.

Melissa and I used combinations of bean bag chairs, kiddy recliners, an extra spica cast car seat sat on the floor that acted as his place to eat meals, a four wheel scooter for Connor to lay on in order to use his arms to get around.  Whatever worked, no how obscure, we used.  Connor, as usual, was a tough guy and good sport about most of what needed to be done.  That’s not to say the days did not come without a very frustrated and cranky three year old… and cranky 33 year olds for that matter.

Eventually, after a full 5 weeks, the cast came off.  The plate could stay in him for up to three years.  Physical therapy would be needed to get those leg muscles strong again.  We thought the hard part was behind us.

Fast forward to this past fall when Connor met with his new orthopedic surgeon for the first time since moving to Minneapolis.  All his past records and imaging were sent over to the new doc. She compared old x-rays to the ones they just took down the hallway during his first visit.  Concern grew.  She also wasn’t too pleased with how his left foot (the once clubbed foot) felt when moving it around.

Turns out his left leg, while growing beyond the influence of the plate, began to straighten itself out again.  The lovely angle formed during the surgery was no longer optimal.  This was a problem.  The doc wanted to be absolutely certain, so in December, we took Connor in for an arthrogram – a procedure where they inject contrast dye into an area to see tissue, etc. in an x-ray.  The results of that imaging confirmed her concerns for Connor’s hip.  Also, while peacefully under the influence of anesthesia, she tested his clubbed foot again and strongly felt that it had tightened up and would need an achilles lengthening (something that was done before too).

A surgery was scheduled, and here we are.  So what to expect:

– The original plate will be removed.

– The doc needs to break his leg again (ouch) and bend it to the preferred angle.  New plate.  This will also make his leg a bit shorter still than from the last procedure.

– His achilles tendon will be lengthened to help out the tightness in his left foot and ensure that a clubbed foot does not return.

– Wild card: the doc is also interested at looking at an extra bit of cartilage that is extended off of his left hip.  If it looks to be no problem with what is going on, then she’ll leave it be.  If it seems like it’s causing issues, she needs to remove it.

That wild card is actually fairly significant because if she does nothing to it, all is well, and CB will only be in that cast for 6 weeks.  If she does any modifications to the hip, then CB’s casting will encompass BOTH legs all the way to his heels, and he could then be in the cast past 6 weeks and up to 12.  TWELVE. WEEKS.

That last little bit does not sit well with us.  Six weeks get Connor out of the cast and into physical therapy a couple weeks before the baby is slated to be born (oh yeah, we’re currently 30 weeks pregnant!).  12 weeks in a cast will have him in that dang cast until almost April.  April….. and well… you can surmise what that all could mean.

We’re not extremely concerned about this surgery.  Small change to what he’s been through in comparison.  But, we aren’t excited about having to lug a 30+ lbs toddler (w/spica cast weight on top of that) around for the next 6-12 weeks either.  Weeeeeeee!  Surgery is slated for 7:30 Monday morning.

Well, as always, your continued prayer for this little guy are always welcomed.  We will update here to keep everyone posted with how things go, and how life is going in a spica cast – rough I’m sure.

Thank you all for the light and love you give us.

Blessings to you all.

Posted by: craig and melissa | January 31, 2013

A New Chapter

From C:

‘Your son will need a kidney transplant.’

It seems like a lifetime ago that we heard these words.  So much so that I can’t even remember exactly when Melissa and I were told this prophecy during the five weeks Connor was in the NICU two and a half years ago.  It’s like when Peter was told that he would deny Christ three times before the rooster crowed.  He didn’t want to believe it, but it was an inevitable event.  Much like Peter, we logged those words away deep within the recesses of our minds.  You don’t want to think about it.  You don’t even want to begin to comprehend what all of that will mean.

There was an unsaid promise between Melissa and I that we would take each day one at a time and to not dread of the future.  Without knowing exactly the ‘when,’ what was the point?  With something of that magnitude not at the forefront of your mind, the dread can come back and land on you like a ton of bricks when the time finally comes to stare the right in the face.

Since early December, we knew that we would finally be taking on the issue of transplant in very realistic terms.  Connor’s lab numbers have been on a steady decline since the summer, and his renal doctor lowered his kidney function to somewhere between 25-29% (Stage 4 of 5, where Stage 5 kidney disease is less than 15% function and requires dialysis).  We heard those fateful words once again – ‘kidney transplant.’  It was time to start the planning.

Today was the day Melissa and I met with Connor’s transplant team – the people who will be responsible for guiding him through the next phase/chapter of his life.  The team consists of a transplant coordinator (Shelley), the transplant surgeon (Dr. Cronin), the transplant pharmacist (Dave), a social worker, a child psychologist, a nutritionist (Linda), and his renal doctor (Dr. Pais).  We met with everyone but the surgeon and Dr. Pais.  We will meet with the surgeon next week for a ‘one on one’ session.

To say we were overwhelmed with information would be an understatement.  It felt like Melissa was pregnant with Connor again, and we were meeting the NICU team that would help bring Connor into this world.  We have three folders stuffed with packets, pamphlets, notes, charts and business cards to all sort out over the next few weeks.  It was a surreal day.  But like most days that take us on this crazy ride, we just take a deep breath, look at each other, and take that necessary step forward.

There are a lot of details to sort out between the two of us, and I can tell you that it would take pages on here to fill in every detail.  So, here’s the ‘greatest hits’ version of what we learned today:

– Connor’s kidney function has declined to a Stage 4 level.  That means his team of renal doctors want to begin the process of transplant to bypass dialysis altogether.  This is a favorable and advantageous thing to do, as children and dialysis don’t go well together.

– The search for living donors has begun (special comment on this later).  Connor will also be put on a deceased donor list to accumulate time as a precautionary measure in case a living donor does not work out.

– The process will take several months to sift through potential donors.  It’s a pretty involved screening process to make sure that Connor gets the healthiest kidney possible and to make sure the donor comes out of this whole thing healthy as well.

– We do not know the exact date of when the transplant will take place.  But, we are looking at something after May – whether the procedure is a living or deceased one.

– The new kidney will last 15-20 years (live donor) and slightly less from a deceased donor.  A live donor is preferred because of this and because it is a much more ‘controlled’ situation.

– Once the surgery takes place, Connor will be taking immunosuppressant drugs for the rest of his life so his body won’t reject the donated kidney and future kidneys.

– His hospital stay will last about a week post surgery and will need to stay home for at least a solid month to three months.  This will help him avoid any contact with potential viruses or bacteria while he is most susceptible to those things.  He will also go to the transplant clinic three times a week for the first month for follow-ups.  It then becomes weekly for a while after that and than every three months after that.  This is to take blood work and help ensure that his body does not reject the kidney.

– Once the transplant occurs, we can expect almost immediate results in the improvement of his life.  His appetite will become much greater than it was (YAY!!!), and he will have way more energy than he has now (as hard as that is to believe with this two year old) because his new kidney is getting rid of a ton more toxins than his old one.  This will allow his body to grow and develop the way it desperately needs to.  This kid is still off the charts in size – both weight and height.

That’s about it to share for now.  Now, about that live donor part…

Yes we are currently seeking a live donor for Connor.  Melissa and I will be screened to see if we are a match.  The search will almost certainly reach beyond us.  If you feel compelled that you need to help this little man in this way, and want to be screened as a potential donor, please email Melissa or myself.  We understand that donating an organ is a huge sacrifice for anyone, and it does not fall lightly upon us the weight of having to ask something so significant as donating a kidney to our son.  We’ve decided to go the living donor route because of the longevity benefits from a living kidney.  This is a moral choice for us as well:  Over 100,000 people in the US need a kidney transplant and only 25,000 receive one per year from the deceased donor list.  We do not want to take an opportunity away from someone who has been suffering from kidney disease by opting for a deceased donor if a live donor is out there for Connor.  Some may view this differently, but we will only go the route of a deceased donor if no live donor can be found.  There are more reasons why the live donor is advantageous at this point, but it is on the biological level and we don’t want to bog folks down with those details.  The bottom line is that we believe this to be the best route for our boy.

So please, take a moment and consider if you are willing to donate to Connor.  Don’t assume that you don’t qualify as a donor just because you may not be family.  A genetic link between donor and recipient, although beneficial, is not necessarily required.  This is largely due to improved anti-rejection medications.  In state, out of state – it’s all the same.  So please, take some time and think about it.  We have tons of information to share with you if you are interested and have questions (which I’m sure all of you do) regarding procedures, screenings, travel, insurance, etc.

We love each and every one of you that subscribe to this blog and will love you no less if this is not the thing for you.  This is a very difficult and personal choice and we respect that choice.

The only thing that we can ever ask from any of you is the thing we’ve asked from the beginning – Keep praying, keep hoping, and keep loving.

Blessings to you all.

Posted by: craig and melissa | April 15, 2012

Throw the Ball

By: M.

Connor was pretty proud of his ball throwing on Friday! Thankfully him and Rudy get along really well 🙂  In case you can’t tell, at the end he says “Yay, I throw the ball”

Posted by: craig and melissa | April 3, 2012

He’s the Cream of the Crop

By: M.

Who knew that a visit to the mall with a toddler can be all fun?! The other day Connor and I ventured to Baby Gap specifically to use up a gift card we had. I had forgotten the stroller at home, so he had to walk most of the time. Now that he’ll repeat many words/phrases we say, he started saying “oh, cute!” to any article of clothing I would look at!

We were making our way towards the front of the store when he stop and broke into dance – twice – just wish I captured more than this! It gets me every time 🙂

 

Then he was suddenly interested in these sunglasses and actually kept them on!  So they came home with us!

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Posted by: craig and melissa | February 8, 2012

WNW: Walk, walk, walk

By: M.

What’s this?! A new post? That’s right, you’re not seeing things. In case you didn’t know, it’s February and not Halloween anymore! Sorry about our disappearance. Eesh. I promise(!!!) that I’ll return soon with updates on Connor’s medical standing… but speaking of standing, we have a boy on our hands that is now taking steps on his own! We felt this was rather blog-worthy. So without further ado, here are some fun videos and a few recent pics:

This boy loves his football (and watching the games, too)

Giving Ernie a ride on his turtle

One big sweetheart

Walking around last night (with the cutest giggle at the end) 🙂

Walking at therapy today – WOW!

We couldn’t be prouder of our boy!!!!!

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