Saturday, August 4, 2012

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!
  

2 comments:

  1. We have a 3 year old Maddie with PFFD. She is currently seeing Dr. Herring at Scottish Rite hospital. I am however not her biological mother and personally feel that the doctor isn't doing anything for her at this point until she is much older. Her biological mother passed away last year from a heart attack at 40. Madalynn is healthy and happy but I want her to have "full potential". She has other problems too such as with her arms not fully able to extend or bend.....we aren't sure as to why just yet. They're unable to diagnose since she has so much cartilage right now in her elbows. She also seems to have problems with her speech as she doesn't make complete words and really struggles with trying to repeat words. We have incorporated some sign language and that helps quite a bit. I see your little Madi and how courageous she is. She is truly an inspiration. I do wonder if it's alright with you, to know if your Madi or anyone else you may know with PFFD has these issues as well? I don't know if it's common with those with PFFD or if it's totally unrelated. I really want to learn more and you seem to have had many more experiences than we have so far. Any recommendations would be greatly appreciated. I hope your daughter has made a full recovery from her surgery and itching as I saw she had a reaction from the glue.

    Also I haven't ever replied to anyone's blog or ever created one. Could you tell me your thoughts on how it has affected you and your family by doing so?

    I am sharing with you a story of our Maddie that her father and myself wrote for a safety sleeper bed.
    http://www.funditfwd.org/spotlight/sponsor_Madalynn.html

    Thank you so much for taking the time to read my comment and I look forward to hearing from you soon.

    Alicia Edwards

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    Replies
    1. Hi Alicia. You wouldn't by chance be talking about Tammy Edwards' Maddie? She was an amazing woman and I miss her facebook posts, they were always so optomistic and upbeat. Maddie is adorable. My Madi doesn't have any problems with her arms but she has had some delayed speech. It is getting better but I would say she is still probably 6 months behind. I did take her into have her evaluated by speech therapy about a year ago and they told me that it is not uncommon for kids with physical disabilities to be delayed because they are so focused on learning how to move and walk that they just aren't as focused on talking. They just recommended working with her and reading to her and making a picture book with her favorite things.
      I would absolutely recommend Dr. Paley Florida. He is probably the most knowledgeable doctor in this type of condition. If nothing else you can send him and email with a copy of an xray of Maddie's and see what he says. That's what I did and he called me the next day and told me he could fix Madi's leg. Its not always been easy traveling but its been so worth it. The first surgery she had helped her so much with her walking. It can't hurt to see what he has to say.
      Madi is doing really well and healing everyday. The itching is finally getting better.
      The blog has been really good. It has been a nice way for friends and family to keep updated on her progress and I hope it helps other families with pffd kids as well.
      I hope some of this has helped. Maddie is beautiful and I hope she is doing well. If you are on facebook, look me up under Lori Willcox. I am a friend on Tammy's facebook page. Let me know if there is anything else I can do or any other questions you have. I am happy to help. God bless!
      Lori

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