Third Surgery Complete and Glad to be Home

Ready  fly to Florida

Loving the pool at the hotel

  

We arrived in West Palm Beach on Monday July 23rd.  I was determined to make sure that Madi and Julia got to have some fun before surgery day on Wednesday.  They spent lots of time at the pool at the hotel that night.  Our pre-op appt was scheduled for 7am on Tuesday morning which was early but worked out well because we were done by 10am.  The girls decided to spend the morning at the pool and then we went to the beach after lunch.  Madi actually really enjoyed the ocean this time.  Last time she went the waves scared her but this time, I couldn't keep her away.  Lots of seashells were collected and I am sure we brought a bunch of sand along with us in the car on the way home. 


Waiting for surgery

Decorating Mommy's "bunny suit"

Ready to go back

   The morning of surgery we arrived at 8 am ready to go.  I was a bundle of nerves as usual and I could see that Madi was as well.  It was as if she recognized some of it but couldn't quite put it all together.  The longer we waited and watched some movies the more relaxed she became and the more anxious I became.  I finally got dressed in my "bunny" suit and carried my Madi back to her surgery room.  I stayed with her until she was asleep, gave her a kiss and left her in Dr. Paley's hands sobbing as I left the room.  I keep thinking this will get easier but it never does.  My mom and me settled into the waiting room anxiously awaiting any updates.  After a couple of hours an associate of Dr. Paley came out to let me know that Madi was doing great but Dr. Paley had noticed that her knee was bowing in a little so he wanted to put in an eight plate to compress the growth plate on the inside of the knee so that as she grows over the next year it will correct itself.  He said it was a small incision nothing different with her recovery.  I was so grateful that Dr. Paley checked on every aspect of her leg and noticed this so it could be corrected now.  We continued to wait and finally got to see my Madi in recovery that early evening.  The nurse said she was the sweetest child she had seen wake up from anesthesia.  She said she just woke up with a smile and asked for her mommy.  That's my girl!!  She just smiled at me when I saw her and said I love you!  We eventually got up to her room and the evening was pretty calm.  Madi was pretty groggy most of the night and for the most part slept and watched movies.  I was able to get a little sleep but its hard when the nurses come into check on her every few hours.  Madi ended up spending two nights in the hospital and was ready to go back to the hotel. 

Feeling pretty good in the hospital

Not so happy to get into the wheelchair



Ready to get out of the hospital!

        She never really complained about pain but more about itching around the incision sites.  In fact one morning while we were at breakfast at the hotel she decided to scratch her itches while I was getting her food and I came back to find her incision bleeding.  Just about gave me a heart attack!  Once I got her out of the brace and cleaned up I saw it wasn't too bad and put some band aids on so she couldn't itch anymore.  We were able to go see the rescued turtles and go to pet sting rays and starfish.  Madi enjoyed that very much and Julia especially enjoyed it since she had never been before.  All in all Madi did very well, she really didn't have much pain but the diva personality came out  a little.  She had a short fuse and would become frustrated about her movement limitations.  Needless to say I was physically and emotionally drained. 

Two peas in a pod

Got the ok to go home!

    A week after surgery we took Madi in to have her incision looked at.  They said that her incision looked really good but she had a rash around both of them.  It looked like she was having an allergic reaction to the surgical glue that they used.  That would explain the itching! They had to peel the glue off of the incision so her body would stop reacting to it.  She was not happy.  In fact, I don't think I have heard her scream so loud.  It was hard but I knew it would help her.  We got the ok to go home and was told we could give her benadryl for the itching. 
      Thursday August 2nd Madi and I woke up bright and early to fly home.   I knew flying home was going to be a little tricky.  I had Madi in her brace, a backpack, my purse, a pillow and the stroller.  I asked to board early on the first plane which they let me do but just had the flight attendants watch me as I struggled to get Madi, myself and our stuff to our seat.  Thanks for the help!  We got situated and she slept for most of the flight.  When we landed in Dallas I waited for everyone to get off of the plane and then proceeded to try to load up the bags, pillow and Madi.  As I was struggling to do this a flight attendant walked up to me and said "excuse me, can I just get past you".  Are you kidding me???  No offer of assistance, no nothing. Thanks again!  By this time I was spent.  When time came to board our next flight, I was dreading it.  I again asked to board early.  This time, thank goodness, the flight attendant offered to help me and carried Madi's pillow and bag.  She also told me to wait until everyone else got off when we landed and she would help me get off the plane, which she did.  Thanks to that attendant! 
    So here we are at home.  It feels so much better to be here.  We decided to rent a wheelchair for Madi because she was getting a little big for the stroller.  She loves it.  Over all she is doing so well.  She really has no pain, just itching from time to time but the rash looks so much better.  I am slowly getting back to normal.  I am exhausted but catching up on my sleep each day.  My back is another story.  Madi is so much bigger now than her first surgery and its so hard to pick her up all the time.  Oh well, maybe a massage will be in order! 

   I am so thankful to my parents who drove all the way to Florida and back so I could have some help and we wouldn't have to rent a car.  I don't know what I would do without them.  We also want to thank all of our friends and family for all of your support and prayers. It truly means so much to us to have you all there for us.  We still have a long road ahead.  We are just praying now that Madi's hip will heal the way it needs to for us to continue on and get to the lengthening phase.  More updates to come.  God bless!
  

Ready for the Next Adventure?!?!

So here I am starting to get anxious about this next surgery.  Its the same thing each time, you would think that I would get used to it by now.  It just doesn't get any easier.  Julia left this morning with my parents to start the road trip to West Palm and I am missing her already.  I fly out with Madi on Monday.  I am just trying to focus on letting Madi play and have fun running around since she will be off of  her feet for 6 weeks after this surgery.  I really hope it goes fast!  As you can imagine, its not easy keeping a 3 year old immobile for 6 minutes let alone 6 weeks.  I keep praying that this surgery will work and we will get her hip to heal the way that Dr. Paley wants it to. 
    Although I am anxious about the surgery, I am excited that we may be able to meet some new friends while we are down there. There are several kids down there that are in the lengthening process.  Its always so nice for Madi to meet other kids just like her and of course it is nice to meet other parents that know just how I am feeling. 
    That's all I have for now.  Stay tuned...  I will update as we get closer to the surgery which is scheduled for Wed. July 25th.   Thank you for all of the prayers!

Preparing for Another Surgery

    Well, its been a while since I last posted and we were anxiously praying for bone growth and healing for our Madi.  After many months and several x-rays we learned that Madi's hip is not healing the way that Dr. Paley wanted it to.  There is a lack of bone growth and some shifting in her hip area.  He told us that he needs to do a Valgus Osteotomy to straighten it out and add even more bone growth material.  To say I was devastated is an understatement.  I was so hopeful that we would get some good news.  I began to question whether I was doing the right things when it came to Madi's care, that maybe lengthening wasn't the direction we were supposed to go in.  I had many questions for Dr. Paley.  I asked what would our next step be if this didn't work, what the recovery was like and if she needed this surgery regardless of whether or not we continue on with lengthening.  The answers he gave me reassured me so much.  He said that while this occurs in only about 5% or less of his patients, he has always gotten the bone to grow and the hip to heal.  There was no hesitation at all in his answer.  He said that he would get it to heal and told me not to be discouraged, that we haven't lost any ground here.  To hear his confidence reassured me that I am doing the right things for her.  He did say that he would like to do the surgery in the next 3 months so I have scheduled it for July 25th.  We will have to be in Florida for about 10 days.  Her recovery will be a bit more difficult than the last surgery.  She will have to be on crutches or a walker for six weeks, only being able to toe touch with her shorter leg, which should be fun with a 3year old with tons of energy.  She will also be doing physical therapy during those 6 weeks and will have to wear a soft brace. 
  Here are a few updated pictures...

                                                        Love my Sister!

                                              Me and my best friend Gauge!

                                                     Happy Halloween!

                                                       Merry Christmas!

                                                     Yay for spring!

We have been through so much with Madi and we still have a long way to go.  She has such an amazing spirit and I know that she will get through this next surgery with flying colors.   We are so thankful that we have such amazing family and friends who continue to support us through all of this.  We appreciate all of your prayers and ask for your continued prayers as we embark on this next surgery.  To all of our fellow PFFD families, please know that we continue to pray for all of you.  We have gotten so much support and strength from all of you and we couldn't be more grateful for that.  I will keep you all updated as we get closer to surgery. 

Praying for Bone Growth

Well, we made it through another surgery!  On August 30th, we had our pre-op visit at Dr. Paleys office.  Madi ran right to Servando ( one of Dr. Paleys amazing PA's) and gave him a big hug.  It was so nice to see her not scared of the office and the doctors.  We had new xrays done and Servando explained to us that one of three things would happen in surgery.  One, that they would remove all the hardware and inject the bone growth material in the hip area.  Two, that they would remove the hardware, and put it back in a better position and inject bone growth material.  Three, that they would remove the hardware, cut off the bottom portion that attached to her femur and put back in the upper part that would be in her hip and inject bone growth material.  All of these options required a much shorter surgery and incision.  I was feeling pretty good, although I have learned to always expect the unexpected.  The next morning on August 31st we loaded up bright and early to arrive at the hospital at 6:00am.  They got us all situated in pre-surgery and Madi settled in with the dvd player and her doll.  She was in such bright spirits that is made it a little easier on me.  When it was finally time to go back they gave her the "goofy juice" and I dressed up in my white suite and hat to walk her back to the surgery room.  She insisted that I carry her which was of course, just fine with me.  I laid her down on the surgery table and they started giving her the gas to put her to sleep.  She drifted right off, not a fuss.  Everyone kept telling me that she would be just fine, that they would take care of her and I thought I was going to lose it.  Which is so silly because this is not the first time I have done this.  As soon as I left the surgery room, I started to cry.  I hated having to put her through another surgery so soon. 
  We (my dad and I )  proceeded to the waiting room to begin our wait.  I know they said it would be a shorter surgery, but since her first surgery was so long I anticipated a moderate wait.  I got an update about 45 min into the surgery that all was going well and then was astonished when Dr. Paley came out after only an hour and a half and said he was all done and that things went great.  He said that there was more bone growth in her hip than what he could see on the xrays, which was great.  He also told me that he opted to remove the hardware and just replace the top portion in her hip, which could remain throughout her lengthenings to protect her hip.  I was relieved.  It wasn't too long until we were able to go back to see her in post op.  She was woozy, but gave me a smile right away and kept drinking from her little bottle they gave her (since they don't have sippy cups).  They took her up to her room pretty quick and we settled in for the night.  She had one drainage tube inserted which she hated.  As long as she couldn't see it she was fine, so I had to keep it covered with a blanket.  She did great.  The next morning they pulled the tube and said she could be discharged.  She could start weight-bearing on her leg whenever she was ready.  It only took her a few days before she started attempting to walk again.  By the time we came in for her post op visit she was doing really well.  Servando removed the bandage and said we were good to go.  Her incision looked really good and was along the same line as the first one.  We flew home a week after surgery and she has been doing great since.  Right now we wait and see how her bone grows.  She has to have a stable hip for us to continue with lengthening.  So please send prayers that her bones grow well.  We won't do lengthenings until she is at least 4 years old so hopefully no more surgeries for the next year.
  Madi turned three on September 18th.  She has been through so much for such a little girl, but she is so strong and so determined that I know she will make it through all of this with flying colors.  I am so proud of her. 
  Here are some pictures from our trip and from home.  Thank you for all of your support and prayers! 

Waiting for Surgery

 

        Ready to go back

 In post-op just after surgery

In such good spirits in her hospital room

 So happy to leave the hospital and get back to the hotel

 At the hotel, first attempting to put weight on her leg

 At our post-op appt with Servando

Happy to be home with my dog Gauge

Love my sister, Julia

Enjoying one of the last warm days of fall

Yay!  The first snow of the season. 

Busy Summer

Well so much for blogging on a more regular basis.  I have no excuses but just being too tired at the end of my days to sit on the computer.  I apologize.  Lets see, where did I leave off.  Madi has been doing amazingly well since her surgery in October.  She is back to being my little dare-devil!  Climbing furniture, jumping off couches and giving me little heart attacks all day long!  We went back to see Dr. Paley in May for a follow up appointment to see how she was healing and we left with more than we anticipated.  We got new x-rays while we were there and then waited for our turn.  Knowing how long it can take to see the doctor we came prepared with lots of snacks and toys.  Madi was in heaven with  lots of little kids to play with that were just like her!  We eventually were taken back to a room and when Dr. Paley first came in and wanted Madi up on the table she freaked out.  This girl has not forgotten what has happened in this office.  Dr. Paley asked me to just have her walk up and down the hall so he could watch her gait and then I got up on the table and held Madi in my lap and she was perfectly fine.  Even laughed when Dr. Paley tickled her.  He looked at her xrays and told us that the bone around her hip was growing in but not as much as he would have liked.  He then told us that he wanted to go in and put more of the bone growth material in the area to stimulate the bone to grow more.  He said some kids just need a little more and its not a big deal.  Its just an outpatient procedure.  Whew!  Not so fast though!  He continued to study the xrays and explained to us that he was not happy with the placement of the plate in her hip and that he would like to go in and remove and replace it.  This would be a 1-2 hour surgery with 1-2 nights in the hospital but no cast.  He then told us it needed to be done in the next 3 months.  Ok, while I was happy that things over all were not bad, I was not excited to have to plan another trip, let alone another surgery in three months.  As you all know we live quite a ways from Florida and each trip no matter how small is a huge expense.  Oh well, whatever Madi needs we will somehow make happen.  So we scheduled the surgery for the end of August and went on with the summer.  It has been quite busy getting Julia ready for kindergarten and getting ready for this next trip.  Since Julia is starting school and Mikey is in school and working. We decided that I would go to Florida with Madi and my father would come with us.  My mom would stay home to help with Julia.  We should be there a little over a week and I pray it will be simple and there will be no surprises.  I ask you all to pray for my little girl, that she will be strong and get through this next surgery with flying colors!  Her surgery is scheduled for Wednesday August 31st.  I will keep you all updated as we get closer!   Here are some pictures since a finally got them off of my phone.  Some are from her previous surgery and some from the summer. 

Amazed!

So first of all let me apologize for the long absence of my postings.  All I can say is that things have been busy, busy in our household.  I think when I left off we were still in Florida, anxious to go home.  Madi stayed in her cast for 6 weeks and I have to say it really went by faster than I thought.  Although she did become a little bit of a diva while she had it on.  It was sort of like Madi said "jump" and mommy and daddy said "how high".  She became attached to her  Tinkerbell foam couch and sat in it all the time watching movies, sponge bob and yo gabba gabba.  She eventually like some time on her tummy, playing with toys and towards the end of the six weeks was rolling around and scooting on the floor. Nothing was going to stop this girl.  I remember there was one night I was at work and I called home to check in and Mikey said that Madi was watching tv down in the family room and he was out in the living room.  Sometime in our not very long conversation he said "Madi, how did you..."  Turns out my little daredevil scooted her self across the family room, up the 3 stairs leading to the kitchen, through the kitchen and dining room and to my husband.  That definitely showed us the fighter she has in her.  She continued those kind of maneuvers throughout that last week.  Then we left for Florida in mid November to see Dr. Paley.  Since it was getting cold in Iowa, the warm Florida air was perfect.  We arrived the day before our appt and the morning of our appt at the hotel breakfast we met several other families that also had kids going to see Dr. Paley.  It is so amazing the things he does and the people he helps.  We are so blessed.  We say Dr. Paley that afternoon and he said she was healing well and  the cast could come off.  He also had to pull the pins out of her knee.  Well, let me just say, I was not at all prepared for that.  I thought surely they would give her some good drugs or something but he just told us to hold her dress up so she couldn't see what he was going to do and before I could even blink he took the pliers and just pulled them out 1,2!!   WOW!  I'm sure it wasn't too comfortable for Madi but she stopped crying pretty quickly.  Dr. Paley told us she could start physical therapy as soon as we got back 3-5 days a week, and we didn't need to come back to see him for 6 months.  Awesome, so feeling horrible about the whole pin-pulling experience we decided to take Madi out for some sweets and toys!

     It was so nice to see her out of that cast and she seemed so happy about it!!!  Within a week in a half, Madi was standing up and trying to put some weight on her leg.  Of course she was very nervous.  We started physical therapy with two of the best therapist and she amazed us every session.  By six weeks of physical therapy she was running around, climbing stairs, climbing ladders, going down slides, astounding all of us by her quick recovering and doing so well that when the therapist checked in with Dr. Paley he said she had surpassed all of the milestones she needed to meet.  So no more therapy for us.  Whew, it was getting to be a hectic schedule with preschool for Julia  and Physical therapy. 
    We are now just trying to get back to a regular routine and continue to be amazed by how well she is doing.  She is walking so much better than she was pre-surgery!  I can't say enough thank you's for all the support we received and continue to receive from all of our family, friends and fellow pffd parents-who feel like family to me!  All of your prayers brought Madi through this surgery and her recovery.  God was truly with her.   I could not have survived without all of your support.  Madi is such an amazing girl and I am so blessed to be her mom!
     I now am praying for our pffd friends who have had and are going to have the super hip surgery like Madi.  I only hope that I can give them as much support as they have given me. 

    I will do my best to post more often and I have lots of pictures to post from surgery time until now.  As soon as I can figure out how to get then from my phone to the computer I will post them.  Best wishes!

Sick of Surprises

So we brought Madi home on Saturday  in the afternoon.  She was glad to be leaving the hospital.  She is so leery of medical professionals now that anytime anyone came in the room she would scream bloody murder.  Upon leaving the hospital we decided to go get her prescriptions filled, one pain med, one for Valium and and antibiotic.  So we go to the closest Walgreen's to our condo.  Well they don't carry the pain med or the Valium.  Nice!  So we go on to a CVS pharmacy and they don't carry them either. While in the parking lot we call Target, Walmart, other Walgreen's etc... No one carries them!  Call the hospital and they say they don't have an outpatient pharmacy.  So long story short, finally found a Walgreen's that carried the pain med and said that they would call around and see if any other Walgreen's had the Valium.  Meanwhile Madi is asleep in the car thank goodness!  Finally get the prescriptions just in time to get home and get her the pain meds. 
  So later that evening around 8pm, Julia starts throwing up.  She throws up all night long and all day long the next day.  She can't keep anything down and is starting to look seriously dehydrated.   So Sunday night my dad and I take Julia to the Emergency room while my mom stays with Madi.  The doctor at the er decides to give her a shot of zofran and has her drink a little Gatorade and sends us home.  As soon as we get home, she throws up again!!  UUGGHH!!  So we load her back up and take her  back to the er.  This time they decide to give her some iv fluids, which is what they probably should have done the first time!  It took them 3 times to get the iv since she was so dehydrated.  She was such a trooper.  Mean while Madi is at the condo with my mom.  She has been throwing huge fits of frustration and throws big fits when we try to give her the pain meds.  Needless to say, my mom had a rough time.  About 5am Monday morning we are taking Julia home, re hydrated and tired.  Just in time to get a couple of hours of sleep and get up for Madi's appt with Dr. Paleys PA, Servando. 
  We get to Madi's appt and she starts throwing a fit as soon as we get to the room.  Can't even tell you how bad the fit got when they had to saw the cast to remove it.  I can only imagine how scary that must be for a two year old.  Scares me a little.  We get her out of her cast and Servando looks at her incision which he said is healing so well!!  That is awesome.  Showed us the pins in her knee, a little scary, but I just better get used to that.  She fussed the whole time we were there.  While he was examining her we noticed a small bulge on her lower abdomen.  Since we had never seen it before he wanted us to see a pediatrician to make sure it wasn't a hernia.  Seriously!!!  This is just what a needed!!!  I have one kid in a spica cast recovering from surgery, the other is having to go to the er from dehydration from vomiting so much and now there is the possibility of another surgery for a hernia!!!  I am done!!  Burst into tears at the mention of seeing a general surgeon.  Servando assures me that he really doesn't think that's the case but just wants to be cautious and see what the other doctor says.  Ok.  Pediatrician examines her and say that it does not feel like a hernia and is most likely due to all the swelling in the area from surgery.  Could just be a little fluid or swelling but nothing to worry about.  WHEW!!  Finally back to the condo and I am exhausted!!  I am so ready to go home!!!