The One With Pictures, The Last One

The last one for now anyways....

Yesterday was Friday.  It was 2 days after her surgery.  The casting day.  Once they took her off the epidural we switched to oral meds and they began to wake her every 4 hours to check vitals and give the meds.  We were up and down through the night Thursday evening and on Friday morning she woke at 6am happy and perky.  It made my heart warm with joy to see her feeling better.  We knew that she was getting her cast that day and they had already begun prepping us for the experience.  I didn't think casting was really that big of a deal but taking the cues from the staff it seemed they were making a big deal of it. First the Child Life counselor came in with a book of pictures to explain how the process would go and then she asked us what diversions worked well with Katelyn.  Does she like music? What kind of toys hold her attention? etc...  Following her brief interview came the nurse who talked to us about the drugs and how casting can be "uncomfortable" (that stupid word) and do we sedate or just heavily medicate etc...  She also mentioned that the parents should come along for support.  Of course I already knew from that picture book that you see everything (and for us means 3 incisions and two metal rods sticking out of her little leg) so thoughts of "Joey you got this one I'll just stay back and sit this one out" went running through my head; however, in the next moment I thought "no I can't not go, I have to be there with her, I'm the Mom".  Time passed and it was finally our turn. The casting tech ended up bringing a cart to our room and doing the procedure on our bed.  The interesting thing was that the sedation meds actually had the opposite effect on Katelyn.  Once administered she actually got loopy and hyper at the same time.  It was comical rather.  In the pic you can see Joey holding her, the child life specialist using her diversions, the nurse doing her thing and the casting tech doing her business.  Takes a lot of people to give a baby a cast I guess.  Turns out she did feel pain but it wasn't extreme and the wounds weren't completely exposed so both she and I survived the ordeal. :)

A few hours after the casting we needed to go for final x-rays.  We requested a copy so that our Ortho doc in Ohio can have some for her follow up in May.  I thought it would be interesting for you to see a little bit of what's going on inside her body.  Image number one is the day before during our pre-op visit.  It's a side profile image of her left leg.  All you see present is the tibia bone and you can see that it's curved and not straight like most regular shin bones.  That's what makes that little bump with the scar/dimple that she had on her shin. You can also kind of make out that her foot points downward and not at a 90 degree angle also.  That's where the tendon release/lengthening came into play.


This next one is taken the day we did casting which was Friday 2 days post surgery.  You can see the cast which is surrounding her leg.  You can also see the pins and where her bone is broken into three segments because he did a double osteotomy. Yes those pins come through the bone, muscle and skin to the outside of her body.  Hard to believe. Also even harder to believe that in 30 days they just pull them out and it stings for a bit and yes, I have to be present during that procedure.  Great.... Anyways, her foot is also finally closer to 90 degrees as well (which remember is the whole other half of the surgery) and we're hoping with some physical therapy that we'll get it almost there.


And here we are today, Saturday.  Sometimes you go stir crazy as the parent with a child in the hospital just staring at the same walls for hours on end and trying not to stress about your children.  We try to kill time and make her feel better with things like new toys, visiting the fishies in the playroom, sitting in the sunshine, visiting the Ronald McDonald family room and wagon rides.

We're due to return home tomorrow.  We've had a few unexpected delays (she keeps throwing up) but provided that's better tomorrow we should be all set to come home.  It's been a really long week, we're all missing our beds and of course we miss the 2 big sisters and big brother waiting for us back home.  We've been through a lot this week and we've swam hard through that river of uncertainty.  But you know what? I did find the strength to get through each day like my friend said I would, and those waters of uncertainty, they didn't wash over us.  I'm so thankful that I have great friends who prayed for us, visited us and are ready to support us at home.  We also are thankful for a family that took care of and spoiled our other children while we were away, and a creator in heaven who ALWAYS keeps his promises.  So long Minnesota, we'll be back again in 30 days.

The Other Half of Yesterday

It was just a few hours that we waited.  I think in all we said goodbye at 7:30am and we saw her again at 10:30am.  The doc came out to the waiting room and told us things went well.  He ended up doing a double osteotomy which means that he cut her tibia (shin bone) twice in order to straighten it.  He also lengthened 3 different tendons in the back of her leg in order to get her foot into the right position. I noticed as he was talking he was holding a camera...(you know where this is gonna go right?)  I never have really mentioned in previous blog posts that body fluids/being the nurse type is not my best area; but let me tell you now, it's not.  Like, really not a strong suit of mine.  Just the sight of someone in scrubs make me queasy because it means that medical stuff isn't too far away.  He explained that she had a fibrous tendon where her fibula should have been (some kids with FH do have this, it's common) sort of like her body was trying to make a fibula in utero but it never calcified and the muscle didn't adhere to it.  Hers was so large though he had to remove it.  Please note these are all my unofficial terms and remember he's holding a camera and I'm wondering when it's going to enter into the conversation so my memory of his exact medical terms aren't super clear.  So then he said, "do you want to see the tendon?" (glances at my face) "Oh maybe you don't.. Well I can show you the incisions?"  Then as fast as he can he's scrolling through pictures.. His point was really to show us where she had been cut and then for "fun" to show us the fiberous strand he removed.  We will never see the incisions because she has now a soft cast on and tomorrow will get a plaster cast on until we come back in 30 days.  It wasn't really that bad I guess to see the pictures and as the parent I should know I suppose.

The doctor finished the conversation by explaining that because he did a double osteotomy she now has two pins in her tibia to fixate (hold in place) the fractured areas.  Those pins though are not totally buried inside of her (like I thought they would be) they come out of her foot and when we return she will have them removed.  I wasn't expecting that.  He said that if the pins were internal one day they would have to have a full surgery to remove them but if he left them extruding we could just remove them when we return.  Lovely. He said she wouldn't be in any pain because it's kind of like a hole for an earring.  Ladies have them and they don't feel anything once the initial tenderness is over.  Just before he left us he mentioned in closing that "she's been cut a lot and so she will be uncomfortable" but she was given an epidural that should be in for 3 days to keep her comfortable. Uncomfortable I've learned quickly is a soft word for PAIN.

Off we went to see her in recovery.  She actually held her hand up to her daddy.  She loves him so much and so far he's the one who can rock her to sleep the best.  The rest of the afternoon was spent watching her sleep, rocking, a visit from a therapy dog, a parents tour of all of the hospital amenities, us chatting with friends who came to visit and distract us and so on.  It was nice. However, eventually the evening arrived and at about 9pm she was starting to actively get fussy.  She just needed to sleep, but who could blame her for being so miserable. I'm pretty sure she had a least 6 tubes/wires coming out of or hanging from her body. She kind of did these freak out things where she would waive her hands in the air and scream.  They gave her Valium for muscle spasms but Valium stings in the IV so she freaked out even more.  There was just no consoling her.  They tried Benadryl and Tylenol to just put her to sleep but she just kept fighting and fighting.  It was hard.  Really hard.  I think watching your child be in pain has to rank up there with some of the worst things to experience.  At the worst point I was sobbing holding her when she was screaming, Joey was trying to help, the nurse is looking up what other meds to give her and asking me if I was ok....ick.  It was hard.  Eventually she fell asleep with Joey.  Thank you God for sleep that rests and restores our bodies.  Joey went to the hotel and I stayed and she got to sleep until about 4am when she awoke and the fussing began to escalate again.  During that episode (which lasted about 2 hours) I was just done and said "we need to just knock her out or something" so out came the Morphine.  It does a body in pain well.  But the flip side is she's just so medicated or drugged I just feel horrible for that too.  There just isn't any winning at the moment.

So here we are today.  This morning they decided to remove her epidural.  The sight was getting pink and the talk of possible infection was looming.  Out it came and today we will work through weaning off the epidural meds and onto oral/iv meds.  They can experience some break through pain during this process but so far she has been sleeping.  Well actually now as I'm typing this she's waking up on Joey's lap...we'll see how today goes.

Remember that river of uncertainty I talked about in an earlier post?  In the words of Dory, from Finding Nemo..."just keep swimming, just keep swimming".   Just please pray for us as we swim.

The Waiting Game

Last night we met with the doctor for over 2 hours talking and planning.  He loves his job and he's REALLY good at it.  Good enough that it just confirms that we'll do whatever it takes to continue coming back to Minnesota to see him, at least for any time she needs to have surgery.

While the exchange of information last night was really long and LOTS of info was shared I can only remember some of it.  Funny how that is but I think I hear something and then I just zone out for a minute.  Anyways he went over a lot of info actually about the leg lengthening surgery which is actually the major surgery that she will have to have in the future but in the mean time the surgery she is having right now is to straighten the leg and the foot along with the tendons and such to help her walk better in the distant future and then to eventually prep the leg for the lengthening process.  Something he said last night that stunned me was "remember her body is genetically and biologically programmed to have a shorter leg on the left and so when we do the lengthening we're really playing with fire.  The body is designed to grow and heal itself but not to regenerate parts where it doesn't want to".  Playing with fire.  Nice.  But that's a few years from now.  I'll worry about that on another day.  As for this surgery he did mention that she will have an epidural for pain and a catheter etc. which I was not really expecting.  I guess I've only ever seen pregnant ladies have epidurals so it caught me off guard.

And so today.  I for sure felt the prayers this morning as a part of the process I was stressing about the most was the non-nursing, no feeding part.  My girl still nurses in the morning and she couldn't have anything after 2:30am.  So at about 2 I rolled the dice and woke her to feed her.  Thank you God for allowing her to drift off to sleep after eating until 5:30 when we had to wake.  Even then she was distracted enough that she didn't really fuss for breakfast.  The pre-op went fine, they're beyond excellent with kids here.  She got calming aromatherapy on her little night gown and I'm pretty sure it was more for the Mama and Daddy than for the baby.  The "hand off" went well and she cooed all the way down the hall being carried off on the hip of the nurse.  I'm writing this in the waiting room and right now Joey has a beeper that hangs like a necklace on him.  When it goes off we call right into the OR room and speak with the nurse.  It happens every hour or more if needed.  That's nice.  They've called already once to say that things are going well.  Just a moment ago someone came out and said the doc made some changes, he wants to do some scans (or whatever) and we needed to sign some more paperwork.  Ok.

And that's it for now.  That's all we know.  Just a few hours into it and I think the plan is we will see her in a few hours or less.  My friend Michelle is here which is nice and we have other friends on the way which is a total bonus given we're 1.5 hours from Mankato and the're driving all the way to see us. Just goes to show that we made great friends in Minnesota.

I'll update more once we actually know how everything went...  Thank you for reading and being interested, invested and praying for our family.

Establishing The Home Team

Last week we had a pre-op appointment scheduled with Katelyn's primary Pediatrician.  It was during that appointment that the Doc. acknowledged that we will need to establish a relationship with a specialist here in Columbus that way we can get answers tp any emergencies quickly both for this surgery and for later on down the line. But first let me back up a bit...

Following next week's surgery the primary healing process (or time in a cast) takes at least 30 days.  So tentatively we will be returning to Minnesota sometime at the end of May for the cast removal and evaluation.  However when I was on the phone with Dr. Dahl's Secretary she mentioned that he'd like us to come back for a 2 week post op check up half way in between the 30 day return for cast removal.  I sort of did a melt down at the thought of all of those expenses (and childcare) and then they asked if I'd be willing to remain in Minnesota and send Joey home.  Now I realize that some of the treatments she will go through will require us to live wherever the surgery takes place but I wasn't ready for it now so we came to a compromise that we will have the 2 week post op scans done here in Ohio and sent to Dr. Dahl and he'll evaluate via the computer.  Fast forward to the appointment with the Pediatrician who basically said this is getting over her head and that we should have the 2 week scan post op appointment done at a Children's Orthopedic office.  Well I couldn't complain about that I thought it was a good idea so let's start building a team of experts.

Yesterday was that meeting.  We met with Dr. Ruggles down at Children's Hospital Orthopedic Center.  He intentionally gave us his last 4pm appointment because he wanted to spend lots of time talking/assessing Katelyn.  It turns out that he was hired just a month ago because Children's Hospital of Columbus wants to expand their limb lengthening department/research and so we turned out to be just the type of case he was hired to see.  He's been out in Baltimore for some length of time training with Dr. Standard in at the Limb Lengthening Institute and he also knew of Dr. Dahl in Minnesota.  It made me/us feel so much better to have someone here at home that runs with the same group of professionals that we know of and see.  It was during yesterday's appointment that he said things like "well here we are at the beginning and you're about ready to start this process."  But even more impacting to me was the statement "This journey that you're going to go through with her (speaking of her whole childhood and limb lengthening) is not for the faint hearted parents."  Yes, so we've heard and I read blogs and am on websites and see the pictures, until I turn off the computer because I'm really only 9 months into it and I can't handle looking into the future like that for too long.  But really what other option do we have, right?  Perhaps it's really that the faint hearted parents become strong because they have to for their children.

Some encouragement....When Katelyn was first diagnosed and I was doing a lot of research and I realized what our future would hold, in a moment of weakness I said to a friend "I'm not strong enough for all of this" and she said to me "You know, you'll be surprised.  God gives you the strength to get through today and when tomorrow calls for an even greater strength, you'll have it too because tomorrow He will also be with you and will give you what you need for that day." I've had to remind myself of that a lot lately. Sometimes you just have to focus on just today.  I also had a friend send me this verse..

"Do not fear, for I have redeemed you; I have summoned you by name; you are mine. 2 When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you.  When you walk through the fire, you will not be burned; the flames will not set you ablaze.  3 For I am the Lord your God, the Holy One of Israel, your Savior; Isaiah 43:1b-3a

When you are standing on the banks of one of life's rivers, about to dip your toes into the uncertain waters it really is comforting to know that He won't let the waters sweep us away.  We can do this, I can do this, I got this thing.....right?

Its April. The Month of the First Surgery

Well here we are.  It's April now and Katelyn's first surgery is next week.  I just read the blog post I did before this and it does describe the procedure that she'll be having so here's a recap if you need a refresher:

We met with Dr. Dahl again and got to do more x-rays. He discussed that her femur is now 1 cm shorter than the other (I knew that was coming) and that her tibia is now 5 cm shorter than the other. Its a significant difference. It's nothing I/we didn't know. However what I wasn't ready for was the discussion of her Achilles tendon being so tight and how he wanted to do surgery within the next 4-6 months (before she starts to walk) to not only correct the tendon tightness but to straighten her leg. Part of her length discrepancy is due to the fact that the tibia is curved like a rainbow in her leg. She was born with a scar on the top of her shin which marks where the apex of the bowing in her tibia happens. During this surgery he wants to cut into that bone, reset her leg in a straighter position, insert some metal pins for stability, lengthen her tendon as well and do some soft tissue reconstruction. Whoa... This makes getting tubes in the ear look like a walk in the park. Yeah I wasn't ready for all of that.. You mean THIS spring? Really? So soon? After the surgery her leg is casted for 30 days and then we will return again to Minneapolis for the removal and assessment of the procedure. Thankfully the doc's scheduler has reached out to me because I found myself getting intentionally distracted with the household relocation to actually sit down and make the appointment. Right now we've got it set for April 24th. We will fly on a Monday get the assessment/pre-op appointments taken care of on Tuesday, Wednesday is the surgery and then we will remain in the hospital for 3 days post surgery before returning home.

In the picture below you can see the little bend in her left leg (looks like a bump) that's being removed naturally when they cut into it to straighten her leg.

So it's all set, the flights are booked, the kids are taken care of (thank you to my sister, Mom and my Mom's entire family side of Aunts and Uncles for being so supportive and helping), hotel, rental car etc.... but yet why do I feel like I'm not ready?  I'm not prepared yet.  Even though she's the 4th kid and I've been round the block with a sick child, I still feel so ill prepared.  It could be because she is an impossibly hard baby.  She's really fussy.  She cries just to hear herself cry I think and so to compound injury on top of a fussy baby I will admit, hey I'm a little nervous about the days ahead.  There is still stuff to be thought through I think stuff like getting her home and will she be able to bend her leg in the car seat or the stroller as we go through the airport? Or will a casted leg fit into an infant onsie or the same size pants as the other leg?  Yes, there is still work to be done in prepping.  Some moments it can set me into a panic.  But then other moments I remember that there is something, someone, much bigger than this who has control of this situation.  Then I relax a bit.

So the schedule for next week goes a little something like this:  Monday night the 22nd we arrive in Minneapolis after work, Tuesday we meet with the Doc to do current x-rays, assessments, tweak any planning and get prepped.  Wednesday at 6:30am we check into the hospital (surgery takes a few hours), and the rest of the week she remains in the hospital for monitoring.  If all goes well we have flights set for coming home on Sunday.  Many have asked "will we visit Mankato?" and no, not this time.  I'm not leaving the hospital without my little girl.

If you think of us, please pray for us.  We would surely appreciate it. I'll do my best to blog and explain as we go through the week.