Surgery Complete!

Kids are amazing.  Maddi did so well throughout the whole process.  Here's how it went...

We had to be at the hospital by 8am.  Maddi was not able to eat or drink anything other than clear food and fluids after midnight and until 8am.  We knew that we would likely have to wait a while and that she would fade quickly if she went too long without eating or drinking so we tried our best to get her to drink some apple juice but it wasn't really happening.  She has never been a juice drinker so we couldn't push the issue.  If only you could explain to a toddler that this would be their last change to drink for hours!!

We checked in at the hospital around 8, and we were sent up to day surgery.  We headed off to find the appropriate elevators that would get us up to day surgery.  By this point my "flight" response was already in high gear, let me tell you.  I have not ever been comfortable in a hospital, and I am always looking for the nearest exit where I can make my escape!  So when we boarded the haunted elevator, let's just say that it was instantly full on panic attack mode.  We hit the button to go up, it went down, then up, then down then up then down and this went on for what felt like forever, and meanwhile miss cool as a cucumber, aka me, (haha!) was hitting emergency help buttons, door open buttons all while trying to grab my cell phone to call 911.  Eventually the elevator snapped out of it's frenzy and got us to the right floor, no emergency personnel needed.  Phewf!!

We got to the Day Surgery ward where we waited...and waited...and waited...All the while maddi was becoming more and more irritable.  We finally got called and we changed Maddi into the standard issue stripe pajamas.  After a little more waiting, it was finally her turn to head down to the holding room for surgery.  We met with the anesthetist, and then her surgeon (Dr. Dzus) and we were able to ask some questions.  This was our first chance to talk to her surgeon since the very brief visit we had when she decided to book Maddi in for surgery.  One thing I had been worrying about was what would happen to the severed tendon?  What happened if someday there was an opportunity to try a therapy or surgery of some sort that required having the Achilles' tendon in tact?  We learned that no matter what, the tendon will always re-attach itself.  So the surgeon's plan was that she would sever the tendon and also remove about a cm of length to prolong the amount of time before the two ends would reconnect.  This will hopefully mean it would be a while before she would need this surgery again, if ever.

The anesthetist gave us the option to have either Greg or I go in with her to hold her while they gave her the gas.  Not feeling like this was something I could handle in that moment, I quickly nominated Greg.  I am so glad that he was able to go in with her.  We had heard that sometimes they don't let anyone go in.  So he donned the suit required to enter the operating room, and then they soon came to get them and take them back.  This picture was right before heading in:

We headed to the waiting room where we would hang out until they called to say one of us could come in to recovery.  It was going to be a really quick procedure so we stayed put knowing that the call would come soon.  We had been warned that toddlers sometimes wake up from anesthesia flailing and upset, and maddi lived up to the somewhat.  They called us in after she was extubated and was somewhat lucid.   She was quite upset when she woke up and was trying to rip the IV from her arm.  She was truly in an inconsolable state.  It was quickly clear that it would have to just run it's course.  We've seen this before the odd time when she's overtired at supper time!  Thankfully she wasn't in any pain, as she has no feeling in the area operated on.  Although she kept saying "owie" but it was just the IV that was bothering her.  The recovery room nurse wanted to give her morphine but I politely declined.  Before long she was enjoying her popsicle, smiling again and we were ready to be wheeled back to the day surgery ward.

She was given her favorite food, toast with peanut butter and she perked up considerably.  We were able to leave before too long, thankfully avoiding a second ride on the haunted elevator.  We went back to the hotel where we kept her contained in the bed for the rest of the afternoon.  Later that evening she was ready to move around so we let her crawl around on the floor and the cast lasted all of about and hour.  It wasn't long and it was falling off.  The following morning we called to find out what to do and it turned out that a visit to RUH emergency was our only hope of seeing an orthopedic surgeon.  Thankfully it wasn't a long wait and we were on our way upstairs to the casting room.  This time they did a cast all the way up to the middle of her thigh.  It's too bad she needed such a big cast but we are glad that this one is staying on without issue.

All in all everything went very well and we are so thankful for the team of doctors and nurses and other support people looking after Maddi that day.  This was a simple surgery but we are glad to have it done and over with none the less.  We are also very thankful for everyone's well wishes, prayers and positive thoughts.  It is all so very uplifting and was exactly what we needed.  We are so thankful to have so many amazing, caring friends in our lives.

Surgery Next Week

Next week we will be taking Maddi to saskatoon for surgery.  She is going to have a heel cord release which is fairly common for kids with spina bifida.  Her Achilles' tendon is so tight that her right foot will no longer go into a neutral/flat position, it is always pointed. We didn't get much time to talk with the surgeon about the procedure, so I don't know many details, but basically what is going to happen is her Achilles' tendon will be severed and they'll sew her back up.  Part of me is wishing I would have asked more questions...like, what happens to the tendon once it's severed, as an example.  Of course all the important questions come to mind several days after the opportunity to ask them.

Thankfully maddi shouldn't feel any pain.  She will be under general anesthesia for the procedure and then she will wake up annoyed that she has a cast on, at least we hope it will be that simple.  For those who saw the video of her little fit in walmart, I am envisioning there will be some forceful pointing as she is telling us to take the cast off her leg. If you haven't had the pleasure of watching that video yet, here you go: http://youtu.be/hVp8oKOnXCg.

Maddi is a trooper and I am sure she will do fine.  She has an amazing ability to be resilient and I am sure that this time will be no different. She'll be dragging that cast along in no time.  Our hope is that after she heals from this procedure her braces will stay on her foot and she'll be able to wear them more often.  She is starting to pull herself up on furniture all the time but she stands on the sides of her feet. Having her braces on will keep her feet in a proper position.  This should also help her make more progress with her walking. With baby sister getting closer to learning how to walk, maddi is more and more interested in walking all the time.

Next week we will will be in saskatoon tues-fri, the actual surgery will be on Thursday. Thankfully there is no overnight stay in the hospital required. I will try and write a quick post next week to keep everyone posted on how things go.

Meaghan

We're back!

I should probably re-name this blog "What Happened to the Lawrences"!  I am not even sure where to start with an update, that's how long it's been.  Although it seems like yesterday I last blogged, that's how fast it flew by!  When we last left off, I had just gone back to work and Maddi was celebrating her first birthday.  Maddi is now two and a half, and I am over 6 months into my second mat leave!

Maddi has been doing well and is growing like crazy.  We have added more pieces of therapy and mobility equipment to the mix over the past year.  She now spends a bit of time everyday in a brace called an HKAFO (Hip, Knee, Ankle, Foot Orthotic). I will save explaining what it looks like and post a picture instead:

She still spends time in her standing frame/parapodium:

 

 She uses a wheelchair:

She has a little cart that she uses on outings with the day care:

She still has her afo's and now has some wraps/splints that go on her leg and keep her knees straight.  In this pic she is using them with a set of parallel bars on loan from the Spina Bifida Association of Saskatoon which we are members of:

Maddi is one busy girl between getting in and out all this equipment, and doing all the other things two year olds do!  Maddi still attends the Natural Wonders Early Learning Centre Monday to Friday and she loves it.  We are so thankful for Steph, her one-on-one caregiver there.  Maddi absolutely loves her and we are so grateful for the wonderful care she gives Maddi.  Steph attends Maddi's physio appointments with us and has been learning how to use all her equipment so that she can do therapy sessions with Maddi two-three times per day.  The daycare has been very accommodating and we are so thankful for that.  However, we are looking forward to fall 2014 when Natural Wonders will be opening a new daycare in the brand new school.  Besides being a new beautiful space, it is going to be completely wheelchair accessible!  The current centre is not wheelchair accessible which does cause some issues, so we are counting down the days until the new centre will open!

While Madison has made a lot of progress lately, she still has a lot of work to do.  Mobility-wise, crawling is still her preferred method of getting around the house or the daycare.  Outside she uses her wheelchair, or her hand & foot powered bike:

She is getting better at climbing up and down stairs independently, she climbs in and out of her mini club chair, and we frequently catch her pulling herself to stand, which sounds like a great thing, but she does it without braces on so she ends up "standing" on the top of her foot.  Not so great!  We have struggled over the past year and a half to find AFO's that stay on her feet while she is crawling.  With the help of one of Maddi's physiotherapists, Michelle, we have found a couple of different styles available to order from the USA that we are hoping to try.

We also have a couple of other pieces of equipment in mind that we have been talking to Maddi's therapists about.  One is a dynamic stander called the Rabbit that is basically a parapodium with big wheelchair wheels that she could use to move herself around.  The benefit of this would be that she would be more motivated to stay standing for longer as she would be able to move around easily.  In the parapodium she is totally stationary and therefore gets bored quickly.  Right now, the longer Maddi stays in a standing position, the better it is for her body.  Especially now when she is so young and growing so quickly.  The second piece of equipment we have been looking at is a walker called the Rifton Pacer which offers some support for her.  Unlike the basic walker she uses now, this one would have a pelvic support/sling that would support her weight if she needed to take a break or would catch her if she lost her balance.  The discussion we have been having with Maddi's therapists is that this piece of equipment would help her build confidence with her walking and hopefully encourage her to walk more.  We have been having trouble lately convincing her to walk with her HKAFO and walker as it seems that she is unsure of herself and her balance when she is using them.  It is our hope that she would feel more stability in the pacer and giving her more motivation to walk.  Unfortunately neither of these pieces of equipment are covered through the provincial program so we would be paying thousands out of pocket.  We are hoping to get an opportunity for Maddi to at least try them out and then we will decide what to do.

Aside from orthopedic issues, the biggest thing we deal with is maddi's bowels and bladder.  Late 2012 she started developing UTI after UTI and so this spring it was time to start catheterizing her on a regular basis as the infections were caused by her bladder's inability to empty.  She is now "cathed" 4 times per day and this has really helped cut down on the infections.  Steph at the daycare caths her twice a day so we are very grateful that she was willing to take this on!  Otherwise greg or I would be running to the daycare twice a day to cath her.  Thankfully she still does not have any reflux from her bladder to her kidneys which is a major concern for people with Spina Bifida.

As far as bowels go, let me first explain that it is the nerves at the very end of the Spinal Cord that control bowel and bladder function.  Because the very end of Maddi's spinal cord did not develop properly, her bowels and bladder do not function properly.  For this reason we are going to need to begin a bowel care program which will keep her clean.  Because people with Spina Bifida often do not have bowel control, they are prone to constipation and need help to clear out their bowels.  For now she takes a daily dose of "Relaxa" which is a laxative.  Eventually we are going to need to start a program of daily enemas which will keep her clean.  Unfortunately this is the one area where we really don't have a medical specialist to help us out.  This is really unfortunate because it really is a big, ongoing issue that we could really use some help with.  We have heard from many parents that the Colorectal Clinic at the Cincinnati Children's Hospital is the place to go.  You go for a week and by the end of it you leave with a specific bowel care program that will work for your child.  They take an x-ray of your child's bowels everyday so that they know for sure things are working properly.  We are exploring this as an option but are hopeful to find someone closer that would help us achieve the same result.

I am sure there is something I missed but this should bring you up to speed on how Maddi is doing.  Hopefully I can get into the swing of doing shorter more frequent updates so that I can avoid these long posts!

Next post I promise to introduce everyone to the newest addition to our family and let you know what she is up to!