Another Check-up Appointment

Even though I always feel very nervous every time we go for a check up, this one was pretty uneventful.  We know the drill by now.  Show up, sit in the waiting room for a bit, go back and get an x-ray (it is an unspoken agreement now that Brice always takes her because he's stronger to hold her legs in place, and I just hate seeing her cry).  Then go back to the waiting room for a bit.  Get called in to the exam room and wait some more.  Resident comes in and asks a bunch of questions that should be in the chart.  Wait some more.  Doctor comes in and tries to get out the door in as little time as possible.

In all seriousness, this appointment went well.  Apparently Mackenzie's hip is still developing, but the angles aren't quite where they'd like them to be.  She will continue to wear the brace when she sleeps - naps and at night - and we go back again in 3-4 months for another x-ray and check-up.  The resident this time was quite informative and explained things really well to us.  However at this point I feel like we almost know as much as them with all the research we have done.

She completely freaks out whenever anyone tries to touch her.  When the resident was trying to examine her she arched her back and was crying so hard and trying to get away.  When the doctor came in he told Brice to just hold her on his lap, but she still cried and tried to get away.  It was kind of cute when she covered her eyes with her hands like that would make him go away.

Because things are continuing to improve we will just continue to wait and see.  The brace wearing is just to help hold her hips in the optimal position for growth.  If, and it's a big if, her hip isn't where they want it to be by the time she is about 4 or 5 then we will be looking at surgery.  The doctor still thinks that is not likely.

As far as the walking, not much of an update.  She will take the odd unassisted step here and there but generally just drops down to her knees to crawl.  She likes to kind of crawl/shuffle sitting up on her knees which is pretty funny to watch.  She is an expert at cruising around with her walking toy.  I'll try to get a video one of these days.  She can steer it and everything and will often times grab it and steer it around to walk to where she is trying to go.

The Cast is Off!

On September 4th, 10 weeks and 5 days after she had her first cast put on following a closed reduction, our baby became cast free!

Our doctor agreed to seeing us one week earlier than originally planned due to some of our concerns with Mackenzie's cast.  We weren't 100% sure whether or not they were going to take the cast off at that appointment or make us wait until the following week when the cast removal was scheduled.

It never fails that our appointments seem to fall at a time where Mackenzie has missed a nap or could/should have napped in the car, but didn't.  So, she ends up being a cranky mess on top of everything else that is going on.  Yesterday was no exception.

As with all of our appointments we started out with an x-ray.  The x-ray technician this time was less than friendly.  She was trying to get me to hold Mackenzie's free leg in the same position as her casted leg.  Well, at this stage in the game Mackenzie wants nothing to do with laying on examination tables or dealing with medical professionals as a whole.  She was crying and only one parent is allowed in for the x-ray so I was having to try to hold her down and hold her still.  I told Brice that I never want to have to be the one to do that again.  I hate having to try to restrain her and she doesn't understand what is going on and she is scared.  I don't think they got a very good picture because I couldn't hold her totally still while keeping her hands out of the way and her leg elevated how the technician wanted it.

After the x-ray it was back to the waiting room again. Thankfully our appointment was pretty early in the morning so we didn't have to wait too long before we got called back to see the doctor.

You may remember that our doctor was not the one to do this cast.  He was on holidays when it needed to be changed so one of his colleagues did it.  Our regular doctor didn't seem to care for the cast structure or positioning right from the get go, so because of our other concerns with the cast possibly shifting and the leg circulation when Mackenzie would sit on it, he agreed to take it off at this appointment. 

Enter the "cast technitian".  They needed to make cuts along both lengths of the leg as well as both sides of the torso in order to remove the cast.  The "saw" is very noisy so we were given ear protection for both Mackenzie and ourselves.  As soon as she had the ear pieces on she was already upset.  Then when the saw turned on she got more upset.  Then when the saw was actually cutting the cast she was freaking out and crying so hard and trying to get away.  Both of us had to hold her down and move her around so the technitian could make all the cuts.  After that he had to use scissors to cut out the inside cotton part of the cast.  The whole thing maybe took 5 minutes, but it felt like an eternity.  It is a terrible feeling to have to hold your child down while they are so upset and not being able to explain to them what is going on.

We were given some clothes and towels to give her a quick wipe down.  She was stinky!!!

The doctor came back in and told us he wanted to put Mackenzie back in a diaper splint like she had before we did the closed reduction.  He wants her to wear it for 6 weeks full time (except for diaper changes and baths) and then we will re-evaluate.  He tried to examine her once the cast came off, but she was so worked up and upset that it wasn't really possible.  We asked about a different kind of brace as we have never seen any other DDH patients with these splints, but he said that those were for longer term treatment, or something along those lines that didn't make much sense to us.  As we find every time we go there, he didn't do much explaining and was heading out the door as fast as he could.

Cast free, pretty tired, and waiting for the diaper splint to be made.

So, with our very tired, and now very upset child, we headed down to the rehabilitation centre in the hospital to get fitted for the brace by an occupational therapist.  The process seemed to take forever but finally we were on our way with the brace in hand.

Mackenzie doesn't fit in her carseat with the brace, so she got to be totally free for the drive home and slept pretty much the entire way.

I'll update tomorrow with how the first few days have been going in the brace/diaper splint.......it's been a bit rough.

Cast Check - 9 weeks down, 3 to go!

We went up to Edmonton yesterday for our cast check for this second cast.  We jokingly, but sorta seriously, asked the doctor to take the cast off.  He said no dice though, needs to stay on for another 3 weeks to make sure it can work all of its magic.  It will definitely be coming off on September 11th.  The countdown is on.

The visit was kind of frustrating.  Everything was fine with the cast.  Therefore, we had to drive an hour and a half to Edmonton and we ended up waiting for over 2 hours in the waiting room before we saw the doctor for about a minute and 37 seconds.

He said "the x-ray looks weird",  due to the angle she was laying for it with the cast.   He also told us that she will most likely be put back in one of the diaper splints after the cast comes off.  He wont know for sure, or how many hours a day that will be for until he gets a good x-ray after the cast is removed.  I also asked about Physiotherapy and his exact words were "I don't want anyone touching her".  Nice.  He later clarified that he meant until he is finished his treatment.

We asked to see the most recent x-ray, as we always do.  And he was flipping through a few of the older ones and made the comment "this is where it was dislocated".  I was confused because we were never told it was dislocating.  In fact, on our first visit I distinctly remember him saying "It's not a normal hip, it's not dislocating, but it's not normal".

So, three more weeks to go and we will be done with this cast.  I just pray that this will be the end of the journey for us and no further surgeries will be needed later.

Her new favorite thing to do is to sit like this. Can that be comfortable?!?!?

Scowl face!  This means "I'm having fun" 

The 6 Week Cast Change

Who knew a person could be so happy about their kid being in a cast?!?!

The actual cast change itself did not go so well in terms of Mackenzie's happiness.  However, we are so so so happy with the cast she came out of there with.

We had to be at the hospital for 7 am this time so didn't have to get up until 4:30 instead of 3:30 am like last time.  I got Mackenzie up, fed her one last time, loaded her up in the car, picked up her Auntie and hit the highway by 5 am.

I felt so much better about everything this time going in.  I knew where the best place to park was.  I knew where I was supposed to be going.  I knew what the procedure would be when we got there.  I also knew that my baby would for sure be coming out of there with a cast on.  I was much better prepared.

After we checked in at the Day Ward we had to wait in the waiting room for awhile before they called us back to take Mackenzie's weight (kinda silly with a huge body cast), give us some lovely striped hospital pyjamas, took her blood pressure and put the numbing cream on her hand for the IV.

She must remember being there last time.  As soon as any nurse would come near her and try to touch her she would immediately start crying and freaking out.  

After she was suited up, we headed back to the waiting room for what felt like forever.  She was chattering away, entertaining the room like usual.  But then she started to get tired and cranky.  Finally we were called back to the OR holding room (that's what I call it, it's basically just another waiting room in a sightly different area).   The surgeon came to talk to us.  He was not our usual surgeon due to holidays, OR closures, yadda yadda yadda.  I actually really liked him.  He came right over and crouched down to Mackenzie and said "hi" to her.  Then listened and answered as I pulled out my phone with my list of questions.  The anesthesiologist touched base with us.  Then a resident that would be working with the surgeon, then a nurse.  Finally we were ready to get the show on the road.  

Mackenzie would not even consider leaving with the nurse so I had to go with her into the operating room.  Of course she started crying and getting upset as soon as I laid her down on the table.  I had to hold her arms and head down as they used gas to calm her.  As soon as she relaxed they told me I could leave.  I'm happy that all went quite quickly.  It would have been hard for me to watch much longer.   

My sister and I headed across the street to pick up the necessary Tim Horton's coffee and a bagel and yogurt to sustain us until we would be able to get something else to eat.  And then we commenced to waiting some more.  I don't know why, but it felt to take forever this time.  Maybe I was expecting it to be a lot faster than last time.  It definitely wasn't.  Finally our lovely pager went off and signalled that it was time to go back to the recovery beds to see Mackenzie.  

She didn't seem to be quite as upset as she was the first time when we got back there so immediately I was hopeful.  She also had one entire leg free from any sort of cast!  I was so excited.  I scooped her up as quickly as I could despite all the cords still hanging from her arm and tried to settle her down.  I brought a bottle this time after the disaster of attempting to nurse her last time.   She would drink a little and then cry and drink a little and cry.  She was very agitated and upset.  A nurse brought a popsicle for her to try which she took a few sucks of but then just went right back to crying again.  Nothing seemed to settle her down.  Our nurse gave her a dose of Tylenol and I just walked and bounced her the best I could despite her attachment to the machines.  They wouldn't unhook them until she had successfully kept her bottle down.  

**photo of new case removed due to inappropriate comments

I was planning ahead this time after waiting for what felt like FOREVER last time for the Occupational Therapist to show up.  Before Mackenzie even went in for her procedure I asked the nurse to call OT and tell them we would be needing someone to bring up one of the Hippo carseats to get us set up.  I always felt quite uneasy about the safety of the foam rigged carseat set up we had going on with the first cast.  

A free, but scaly leg

Maybe I jumped the gun a little bit because our OT showed up while Mackenzie was still very very upset.  I was happy to see Chelsea again, she was the same one we had last time and was one of the few people in the hospital to give us any peace of mind last time.  She said with only one leg casted Mackenzie's own carseat would probably be better.   And we actually only needed a small piece of foam behind her back and one under the knee of the casted leg and we were good to go in what looked quite safe.  While Chelsea was still there figuring out her paperwork the doctor stopped by and told me that everything went really well and that her hip was stable.  Come back in 6 weeks to get the cast removed.   

We asked about the waterproof part of Mackenzie's new cast.  The doctor said you could totally submerge her in the tub or pool.  The OT suggested that she wouldn't do it herself because she would worry about not being able to get the skin completely dry under the cast.  It is nice peace of mind though to know that if she has a big mess we can wash the cast.  It is not a Gortex liner, the cotton part of the inside of the cast is more of a plasticy foam type material.  Seems like it is comfortable.  I hope she feels as comfortable as she did in the non-waterproof type.  

With all the technicalities out of the way, we now just needed to wait for Mackenzie to settle down so we could head home.  She did manage to finish a bottle and would occasionally get distracted by cords, the mirror, foam, or Aunties funny faces, and would settle down for short periods of time but she always started back up again.  Especially if a nurse tried to come anywhere near her.  Except the nice nurse who blew bubbles for her and played peek-a-boo.  She liked her!  

Auntie Julie and I pedalled her cast the best we could while I held Kenzie and Julie stuck the tape.  I think the cast was likely still a bit wet because the tape was not sticking very well at all.   Once the pedalling was done I nursed Mackenzie and she finally seemed to settle back down to her regular happy self.  We loaded her up into the car and she slept the entire drive home.  

She is so happy to have her leg free.  She kicks and kicks and kicks it all the time.  The skin is quite scaly, we will need to make sure we moisturize a lot.  I could not be happier with the cast we came away with.  She is fitting in her regular high chair (the one we bought to fit the brace), rode in a regular shopping cart.

I fit in a shopping cart again!

Cast Check-in Appointment

Today we went back up to the Stollery for Mackenzie to have her follow up appointment.  We were supposed to go back after 3 weeks in the cast, but we are heading out to visiting her Grandma and Grandpa in Victoria so they said to come back a bit early.

We were dreading some news along the lines of her hip being out and the past 11 days being pointless in the cast.  Or that she was going to need to spend 6 months in the cast.  Or that she would still need surgery.  Or something else terrible since it seems like we only get bad news when we go there.

Thankfully the appointment was quite uneventful.  Like all our appointments with the orthopedic surgeon it began with a wait in the jam packed waiting room.  Then we had an x-ray.  Then back to the waiting room to wait some more before finally going back into a room to wait some more for the doctor to come in.  Mackenzie was hamming it up and entertaining the entire waiting room.  I don't know what it is about her, but she just sucks in people's attention and holds it.  Must be her cuteness!

Got a sticker from the x-ray tech.  Which I crinkled and then tried to eat and then cried when mom took it away :)

In the examination room we saw yet another resident doctor.  The third one.  Every time a different resident.  He asked us a few questions.  All things that they should know from Mackenzie's chart like when her reduction was, when she would be getting the cast off, etc.  Then he left to go get the surgeon.   I'm all for teaching and learning, but it gets to be quite frustrating.

The surgeon came in and told us that everything looked good on Mackenzie's x-ray.  Her hip is in place where it is supposed to be.  We then pulled out our extremely long list of questions and corralled him into answering them.  We got a lot of good news.  She will be in the cast for 12 weeks, but only 12 weeks.  After the 12 weeks she will go into a brace and how long she will need to wear it will depend on how well she continues to develop.  He said her case is about middle of the road of what he has seen.  Not the most severe by any stretch, but also worse than some that he sees.  He hesitated to give us the numbers for her acetabular index.  It seemed mostly to be due to the in accuracy of x-ray in infants and also that if she is at a slight angle when the x-ray is taken (and she apparently was this time) that can skew the numbers.  He mentioned the number 33, but I don't know if that was what she is at or he was just throwing it out there as an example.  I also saw the number 42 on one of her earlier x-rays they showed us.

He told us that if this closed reduction and the brace following it doesn't completely fix her hip we will just play the wait and see game until she is about 4 years old and if she needed surgery they would not do it until that point.

We go back in about 4 more weeks and she will get her cast changed.  The doctor said depending on the stability of her hip he may be able to put on a shorter cast that would not go up so high on her chest and may also only come to her knee instead of her ankles.  But they will have to check things when they get her back in the OR.  The nurse practitioner who fills out the paperwork also told us she would ask for a waterproof cast for Mackenzie for the cast change, so that's exciting!

Getting the Spica

Our appointment like all of Mackenzie's specialist appointments was in Edmonton and we were scheduled first. We woke up at 3:20am to get ready, feed Mackenzie one last time and drive to Edmonton to be at the hospital for 6:00am.

Once we were registered and waiting with all the other babies that needed various treatments it started to hit home. We were called into a room where they prepped Mackenzie for her procedure of dye in the hip and possibly a tenotomy. They gave her some tylenol and placed numbing cream on a hand and foot where they would be inserting the intravenous. One benefit was is that she got to wear these super cut way too big prison looking hospital pyjamas!

Shortly after we were taken to speak with the anathesiologist. She was very nice and calm, I am sure this is by design, as it helped us immensely. She notified us that one of us could go in with Mackenzie while she went to sleep if we thought that she might have some separation anxiety or wouldn't want to go with the nurses.  After she left we waited for another few minutes before the nurses came to take Mackenzie to the operating room. They apparently were not told that one of us could go in. They asked for Mackenzie and played with her a bit (Mackenzie seemed to like them) and told us they were leaving with her (we decided this was probably best in the end). So there we were, sans our baby. What to do? Like all good Canadians we went to get a Tim Horton's coffee and bagel.

The wait surpassingly didn't seem that bad. Having confidence in your health team makes that much easier. Besides that our Doctor doesn't like to talk very much, everyone involved has been the professionals they are trained to be. While waiting they gave us a little buzzer/ringer like you get at the restaurant while waiting for your table. It would notify us when Mackenzie had woken up and we could see her. That took about an hour and half.

We could hear Mackenzie before we could see her. She was not a happy camper. Besides the drugs having a negative effect on her temper she was starving as she hadn't eaten since 4 am and it was now about 9:30.  She apparently refused the sugar water that the nurses tried to give her in recovery.  Breastfeeding became a non option when she continued to bite out of frustration, which is not something she normally does. This was really difficult for me (Lindsay).  Not only was my baby in a cast from her armpits to her ankles, I wasn't able to calm her down.  I broke down in that moment and cried along with her.  We had a brought a couple bottles for this very possibility, so we set to work warming them up and she drank from the bottle with no problems.

Soon enough she was calmed down and we were left to ponder her new accessory. It was big, covered more of her torso than we had expected, and was very unwieldy when trying to hold her.  No one really seemed to know what we should be doing, or was telling us how we should now care for our child.  The nurses in the Day Ward did not seem overly familiar with the cast and kept asking us questions.   Calls were put in for someone from the plaster room to come and finish "petaling" the cast, as well as someone from Occupational Therapy to come and go through things with us.  This resulted a lot of waiting around for people to show up and extreme frustration on our part.

Waiting around to see what comes next

Once we got Mackenzie settled down and had a few snuggles we could see that she was extremely exhausted so we laid her down on the hospital bed to have a nap while we waited around.  A nurse kept coming in to make small talk, then the woman from the plaster room arrived and told us the cast was still too wet to petal but she would show us how.  She then proceeded to demonstrate on our sleeping child, thus waking her up, but leaving us with the tape to do ourselves later.

Shortly after noon an occupational therapist came by.  She went through with us how to care for Mackenzie in her cast the best she could: briefly explained diapering, that we needed to change her position frequently, how to care for the cast, Mackenzie's skin, etc.  She looked at our carseat and we figured it would not work for us, so she sent for a Hippo car seat to be brought up.  We used a bunch of foam in the seat as Mackenzie was to small for her legs to straddle the seat but I really did not think that it seemed safe at all.  We went back to our own carseat, again with a lot of foam behind Mackenzie to make her flat in the seat, and finally decided this would be the best option.  Really, it was either that, or no seat at all.  We just needed to finish up the paperwork, pedaling the cast, nurse her one more time and then we could be on our way home.

Brice pedaling Mackenzie's cast

Most of the staff kept commenting to us how great it was to see Mackenzie in such good spirits.  We were told many times that most kids would not stop crying and were very upset for the entire time they were in the hospital after getting a spica cast.  She honestly seemed to be pretty much like her regular self except perhaps a little more on the fussy side as she still worked through the aftermath of the anesthesia.   It helped us a lot

I think we finally left the hospital around 2 pm and started our 2 hour drive home.  Mackenzie was exhausted from the day so mostly slept in the car.  I rode in the back seat with her to try to calm her down when she would wake up and cry.

In the car seat driving home

The 8 Week Check-In Appointment

After 8 weeks in the Diaper Splint we headed back up to the city to find out what was in store for Mackenzie.  We were trying to be optimistic, yet didn't want to get our hopes up too high and figured she'd likely have to spend a bit more time in the brace.  We hoped maybe it wouldn't be a full 24 hours a day and we could start weaning her off of it.

Again, our appointment started with them taking a new x-ray of her hips.  We then met with the OT who checked her out and looked at the brace and decided she had grown so much that they would definitely need to make her a new one if she needed it still.

Again we first saw a resident doctor, a different one this time, who checked Mackenzie over rotating her hips checking length of her legs, etc.  He seemed quite optimistic, said he didn't feel much.  We requested that we would like to see her more recent x-ray which is said was no problem and he went to get the Doctor for us.  When the Doctor came in he again, also examined Mackenzie.  He has looked at the x-rays as well.  This is when we got the news that we weren't expecting at all.

The brace had done nothing to help her hip.  Nothing at all in 8 weeks.  He started to explain that he would need to do a procedure called a closed reduction where they put the patient to sleep and under live x-ray with a dye injected in her hip to visualize it better they would attempt to manipulate the hip into the proper placement.  When he said that she would need to be in a Spica Cast after the procedure for 12 weeks my tears started flowing and I had a hard time focusing on anything else he was saying.  He did tell us that if the closed reduction was not successful they would leave her for the time being and they would do a surgical open reduction after she was over a year old.  They would try to get her in as soon as possible for the closed reduction, within three weeks, and told us that she did not need to wear the brace any longer since it wasn't helping at all anyway.

A Nurse Practitioner came in to help us fill out the paperwork that was needed for the procedure, explained things a little more for us, told us someone would call us with a date for the procedure and sent us on our way.