Super Hip/Super Knee
So our journey began. In February of 2011 Hayden had her first surgery, the Super Hip/Super Knee surgery. We had to be in West Palm Beach for 2 weeks for the surgery and recovery. During that time we stayed at the Quantum House, which is kind of like a Ronald McDonalds house. We were able to meet families in similar situations and hear their stories, success and challenges. We also learned things don’t always go as planned. Fortunately for us, this surgery was extremely successful and everything went as planned. Hayden was in a spica cast for a long 6 weeks. After she got the cast off she had to learn to walk again, which only took a few weeks. Today she is a rambunctious little girl that doesn’t let anything slow her down.
The following are Facebook entries made during Hayden’s surgery and recovery.
Florida bound!!
by Rachel Hafermann Smith on Friday, February 4, 2011 at 9:57pm
Well it is time to join in on the Facebook family again. For our friends and family I will be leaving frequent updates on how everything is going while we are in Florida. Hayden’s surgery is scheduled for the Feb. 10th. We will not know what time it is until the night before. Hoping it will be the first case so Hayden does not have to go the entire day without eating. I think we are finally packed. Always feel like we are forgetting something, but isn't that what Target is for...right? Thank you to everyone for all the love and support you have shown us. Please keep Hayden in your prayers!!
We have arrived!
by Rachel Hafermann Smith on Saturday, February 5, 2011 at 9:46pm
Made it to West Palm Beach! We are staying at the Quantum House here at the hospital. Already meeting some wonderful people. All the families we have run into here in the house are pffd patients of Dr. Paley. It is uplifting to hear their stories. The weather is gorgeous....80 degrees. Hoping to pack in some fun with Hayden before the surgery. Preop appts on the 8th and 9th. Hayden was such a good girl today...did so well on the flights.
1st full day in Florida
by Rachel Hafermann Smith on Sunday, February 6, 2011 at 9:37pm
The families staying in the Quantum house come from all over the world and have such touching stories they have shared with us. It seems that we all have an instant bond with one another. As I mentioned in a previous note it is uplifting to hear their stories but at the same time heart breaking to hear all the complications that often occur with these surgeries. Please pray that her surgery goes well as well as the days and weeks after.
Day 2 in Florida.
by Rachel Hafermann Smith on Monday, February 7, 2011 at 11:36am
Hayden is down for a nap right now, Shawn sitting across the table working, and I am taking a moment to myself. Again we spent a good part of the morning playing outside. Looking forward to taking Hayden to the zoo after her nap. I will try to post some pictures later this evening. Checking into giving direct donor blood in case Hayden needs it but it is proving more difficult as we would have to go to a different facility today to donate. Had a bit of a restless night last night...I kept waking up thinking about the upcoming week. It all is so surreal. Although it has been on the front of our minds pretty much since Hayden was born it is difficult to wrap our heads around the idea she really has to go through so much and we are only at the beginning. We are very thankful we have found a physician understands her condition so well and thankful for all of you who love her so much!
The end of Day 2
by Rachel Hafermann Smith on Monday, February 7, 2011 at 9:01pm
Amidst all the fun both Shawn and I are having, the weight of the surgery grows more and more with each passing day. I think today more than ever it has become real. I can't imagine how we will be feeling while she is in surgery. My heart aches for what she is about to endure. I wish life could continue being care free for her as it should be. Many families who have gone through the same surgeries have told us their children adapt so much better than what they expected.
We have our pre-clearance appt with Dr. Paley tomorrow at 3:45. Crossing our fingers we won't have the 9 hour wait we had last time we saw him. Wed we will have pre op appt with the hospital. At that time Hayden will have blood work done, x-rays, and we will be meeting with the anesthesiologist. And so it begins....
3rd day in West Palm Beach
by Rachel Hafermann Smith on Tuesday, February 8, 2011 at 9:08pm
Hayden has been a bit of a handful today. She now holds a new record of 6 time outs in one day. Both Shawn and I were looking forward to "night-night time". I will have to say she has won the hearts of everyone staying here at the Quantum house. She is the little social butterfly of the house. She has brought everyone lots of smiles and laughter. There are a couple teenage boys that are currently getting lengthnings that she has taken a liking to... she likes to flirt.
Different groups have made us a meal each day we have been here. The food has been amazing. We feel fortunate and humbled to have complete strangers take time out of their busy days to put together such delicious meals. It has been nice not to worry about what to make and has saved us quite a bit of money already.
Surgery is still on for Thursday. She will be his third and final case of the day. The other cases are lighter and since her surgery is more involved they want to leave her last so they can have the whole afternoon to work on her. If all goes well he is predicting that she will be in surgery 5-6 hours. That includes getting her fitted and in to her cast. She will come out with an Epidural and can receive additional pain meds for any break through pain. Many of these kids also experience muscle spasms so she may receive medication for that as well. The epidural stays in for 24-48 hrs. We are expected to stay in the hospital for 3-4 days. We will than see Dr. Paley for a post op appt on the 17th at that time she will be refitted for her removable spica cast and then hopefully home on the 19th.
All in all a good minus the 6 time outs.
Day before surgery
by Rachel Hafermann Smith on Wednesday, February 9, 2011 at 2:54pm
On a lighter note. We took Hayden to the beach again today and once again she had the time of her life. We would have loved to stay all day but we had to get back for her appointment.
The university is hosting a BBQ here at the house. I am sure it will be yummy. Hopefully Hayden will cooperate and eat a bunch for her final meal....who am I kidding.
Love and miss you all. Please pray Hayden's surgery goes smoothly with no complications.
Night before surgery
by Rachel Hafermann Smith on Wednesday, February 9, 2011 at 9:47pm
How are we doing tonight? We are feeling anxious and sad but we are OK. I was just telling Shawn that I feel as though I am just going through the motions right now....packing the bags, talking with everyone in the house about the schedule tomorrow, just getting everything ready for the morning but I am feeling a bit numb through it all. I don't know at what point it is really going to hit me that she is actually beginning the long journey we have been preparing for since she was born. I will be leaving posts throughout the day tomorrow as we are updated on her surgery. There have been some last minute emergent add on's to the surgery schedule so we may very well be pushed back later in the day. Unfortunately both of those add on's are families staying here at the Quantum house. The house has been very heavy with worry. The families are weary with worry. Please pray that everything goes smoothly for both girls as well.
As far as how Hayden is doing...she continues to have the time of her life. She loves all the little kids staying here. I have some adorable pictures I will post. She loves to be the life of the party. Oh and we had 0 time outs today (YEAH)! She was a happy little girl all day long.
Thanks again for all your support!
Surgery tomorrow ~10am.
by Shawn Smith on Wednesday, February 9, 2011 at 9:44pm
Big day tomorrow. Feeling pretty helpless right now. We know we've done everything we can to find the best doctor in the world to help Hayden. Hope it's enough. I just can't wait to get it over with. Hayden had a blast today. We made sure she ran as much as she wanted because it will be a while before she can do that again. Went to the beach and played in the sand and the water. Couldn't have been nicer. Met a lot of great families this week. Lots of strong kids and parents. Looking forward to six weeks from now. Just wish we could skip to that. Say a prayer, knock on wood, or do whatever it is you do for our little Hayden Grace tomorrow. It will be appreciated.
In surgery now
by Rachel Hafermann Smith on Thursday, February 10, 2011 at 1:21pm
Sitting in the waiting room right now. Hayden was a brave little girl. They had given her some oral versed so we all had some laughs at our silly little loopy girl. She was so funny. She was not anxious or afraid at all. I walked her back to the OR...she loved the ride and giggled the whole way back. I stayed with her until she went to sleep singing her "You are my sunshine". I held it together until I gave her a kiss good-bye. Shawn and I are doing ok...only a few tears have been shed. She has been in the OR for about 3 1/2 hours. The anesthesiologist just came to give us an update. She is doing fine. They did just start a blood transfusion. We knew this was possible but it came a little sooner in the case than what I had expected. He is currently working on her knee. Sounds like we have a ways to go before they are done. All in all things are going as expected. Thanks for the prayers!
post surgery
by Rachel Hafermann Smith on Friday, February 11, 2011 at 3:04pm
Ahhhhh.....that is my sigh of relief!! Today has gone so much better than I anticipated. I will start from my last post.
Hayden was in the OR for a total of 7 hours, Dr. Paley was actually working on her for 3 1/2 hours. The rest of that time was prepping and closing her up and fitting her into the spica cast. She received 2 blood transfusions during surgery (has not needed any since that time). She spent 2 1/2 hours in recovery...part of the time was due to shift change. Recovery was a rough one. Hayden was agitated and it took a while to get her pain under control....thank you Fentanyl. We got up to the room a little after 8pm. Nursing staff has been wonderful. I am so grateful for the care they have given my precious angel. It was a very long night. Hayden had terrible itching from the fentanyl in her epidural so they took the fentanyl out around 3 am. I got around 3 hours of sleep so Shawn came back early this morning so I could get a little sleep (rooms are too small for the both of us to stay the night. Hayden has been doing so well today. So much better than I could have ever imagined. She woke up around 3 am ready to start the day (ugh). I was happy to have my little Hayden back. She was smiling and talking up a storm. Today has gone smoothly. Still itching here and there but pain has been very well controlled. Thank God for the epidural. The anesthesiologist told us that she would be in extreme pain without out it so we are grateful to have it. I was so fearful how she was going to react to the cast. It is amazing how accepting she has been. We had a spica cast put on one of her dolls so she would be familiar with it. Just a little bit ago she pointed to the doll and said "baby cast" than pointed to hers and said "my cast". Soooo sweet!
Well that should bring you up to speed. Feeling very thankful.
End of post op day 1
by Rachel Hafermann Smith on Friday, February 11, 2011 at 9:38pm
Dr. Paley stopped in and is happy with how everything is going. When Dr. Paley came in the room she looked at him and said with her sweet little voice "thank you"....so adorable!! He was a bit taken back but seemed to be touched by her. Plan is to pull the epidural and foley out tomorrow. I don't think we will have a problem with diaper changes. She has done so well when we have repositioned her throughout the day. The drain will be pulled in a couple days. Once that is pulled we can be discharged. We will stay at the quantum house through the 19th to allow her a little recovery time as well as our final post op appointment were she will be fit for her removable spica cast. My hope is once her epidural is pulled we will get her in the wagon and go on a little walk and to the play room.
Thanks again for all of you who care about Hayden so much.
Post Op. Day 2
by Rachel Hafermann Smith on Saturday, February 12, 2011 at 6:18pm
by Rachel Hafermann Smith on Sunday, February 13, 2011 at 9:08pm
We are "home" at the Quantum house and so happy to be here. Hayden got a good night sleep last night and seemed to really turn the corner today. No obvious muscle spasms. Pain has been pretty well controlled with her oral pain medicine now. It was so good to see her smiling and laughing again. She was chatting it up with everyone who came into her room. Dr. Paley's assistant came in this afternoon and pulled her drain. She gave us the option to stay one more night or go home. We made it back just in time for the twins birthday party. Hayden loved the birthday cake and getting to see the other children. Everyone else in the house was happy to see Hayden. She told us a couple times today that she wanted to walk but didn't fuss too much about it. Distraction is a wonderful thing. Shawn has plans on making her a little contraption on wheels to get around our house....what a great daddy! So the rest of our time we are focused on Hayden resting and healing. We will go see Dr.Paley on Wed and hopefully get the ok to go home. We will fly back home Saturday if all goes well. Looking forward to each day getting better and better!
Valentine’s Day in West Palm Beach
by Rachel Hafermann Smith on Monday, February 14, 2011 at 9:22pm
Happy Valentine’s Day! 1st night away from the hospital went fairly smooth. Hayden woke up a few times but nothing unexpected. She only had a couple spasms in the middle of the night and has needed the valium just one time since leaving the hospital. Just as both Jamie and Lori told me time and time again (both recently went through the same surgery with their little ones) each day gets better and better. It does amaze me how accepting she has been of such drastic changes. Don't get me wrong we are still dealing with "little miss busy body" who would love nothing more than to jump out of bed to run, jump, and play but she really has just gone with the flow of things for the most part. It will take some creative thinking keeping her occupied these next 6 weeks. We did make a little trip to target with her today which as always loved getting to look at all the toys. Mommy and Daddy treated to a couple things we hope will help pass the time. We all had a short little walk outside the weather was beautiful! Our evening ended with a great prime rib dinner that was prepared by another group in the community. They brought desserts for days. This is the first of 11 years I have not gotten my husband a card for valentine’s day...little preoccupied...thankfully he is pretty forgiving.
We are cleared to go home
by Rachel Hafermann Smith on Tuesday, February 15, 2011 at 10:14pm
It turned out to be a pretty big day. We thought we were going to see one of Dr. Paley's assistants to look at a rash Hayden developed under and around her cast and we ended up having our full post op visit. They converted Hayden's cast into a removable one. It is so much nicer. The cast is padded and will eventually be more comfy for her once it breaks in a bit. She does seem more uncomfortable in it since having the new one placed but they were also manipulating and moving her leg for the first time. We will be removing it to sponge bath her and do diaper changes. Dr. Paley showed us a couple exercises we need to do with each diaper change. The incisions are much larger than what Shawn and I imagined (wishful thinking I am sure). We also had x-rays done in the cast and everything checked out ok. We are cleared to go home. Staying through Saturday so Hayden and have a little more time to recover. Plan is for physical therapy 5 days a week (ouch), cast off in 6 weeks, and to return for a follow up in 3 months and a 2nd follow up 3 months after that. Hayden's first lengthening will be 2 years from now when she is 4 years old; we will be here in West Palm beach for 4 months at that time. Our night ended with an amazing Irish meal. One of the big contributors to the quantum house is the owner of an Irish restaurant and pub. He invites one of the families from the Quantum house to his restaurant every Tuesday. Drinks, appetizers, dinner, and dessert on him. The owner greeted us at our car and took us to the back dining room where we were able to lay Hayden down on a bench with pillows and she watched her DVDs. He was such a nice man, went out of his way to make us comfortable. Food was delicious. This entire trip has been pretty life changing for us. So many gracious and giving people have helped us the past week and they ask nothing in return. They do these selfless acts from the goodness of their hearts for complete strangers. It has been a real eye opener for both Shawn and me. We both want to make it a priority to do the same for others. Feeling extremely thankful to everyone...strangers and loved ones... who have shown us love and support in such big and small ways!!
Yeah she pooped!
by Rachel Hafermann Smith on Wednesday, February 16, 2011 at 10:26pm
Hayden seems to be experiencing more pain since she has been in her new cast. Now that she is in this new removable cast we have to take it off for each diaper change. I will be happy when we can do them pain free. It is so hard to see her in such pain....she doesn't understand why mommy can't kiss this owwie away. We finally had a successful POOP tonight!!!! This has been causing her a huge amount of discomfort. Since her surgery all day everyday she has been saying/crying "owee poop". I am praying she will be feeling better tomorrow. If you know Hayden you know she is a terrible eater. Now she just does not eat at all. All the parents keep assuring me this is normal. We don't have much planned tomorrow besides a quick trip to Walmart to buy a wagon to donate to the Quantum house for the post surgery kids to use. Hayden will get some use out of it as well the rest of the time she is here. It is really the least we can do for such a wonderful organization. It has quickly become a home away from home here at the Quantum house.
Best day yet!
by Rachel Hafermann Smith on Thursday, February 17, 2011 at 9:11pm
Today was our best day since surgery! We have been able to space out Hayden's pain meds and the pain has been well managed. Diaper changes are getting a little better and we have worked in some of her exercises today. We gave her a really good bath since we are able to remove her cast now. Today was the first day Hayden showed any interest in eating
(Hooray). She still wants to spend a lot of time resting in bed and sleeping but we did manage to get her out for a few walks today in the beautiful 80 degree Florida weather. Can't believe we will be leaving in less than 2 days. We are sad to leave the wonderful families here and of course the lovely weather but it will be nice to be home again.
by Rachel Hafermann Smith on Friday, February 18, 2011 at 9:16pm
Can't believe it is our last day here in West Palm Beach. Amazingly the past 2 weeks have flown by. It is a little bitter sweet leaving. We will miss all the families here. There is an instant bond among all of us as we understand and are experiencing such similar journeys. Many of them have shared touching and heartbreaking stories. Along with the emotional strain of watching your child endure so much there is a weighted financial burden most families are carrying. Please pray for them!! When life is less hectic and Hayden's cast comes off I want to put together a fundraiser for these families. You just would not believe the sacrifices they are making to get their children the care that has for many of them saved their legs from amputation. If you have any thoughts or ideas on how to raise money for this cause please message me. Hayden had a pretty good day. Morning was a rough one (pooping issues) but she ended the day with smiles and laughter! We are all packed and ready to go. Crossing our fingers she does well on the flight. We called the airline and we will be able to board first. Thanks to everyone for walking this journey along with us. We have a LONG way to the end but so thankful this surgery was a success. Love you all.
Home sweet home!
by Rachel Hafermann Smith on Sunday, February 20, 2011 at 10:19am
4 weeks until the cast is off!!!!
by Rachel Hafermann Smith on Wednesday, February 23, 2011 at 9:47pm
The days are running together and so similar I think one post every couple days will keep you up to date. Yesterday was the first day I ventured out on my own with Hayden. Nothing to exciting just a quick trip to the fabric store. A friend from work came over and made a nice comfy seat for the desk Shawn made for Hayden. She has loved getting to sit upright in it. She is in and out of it all day which is nice since she is so limited to what she is able to do. Mornings seem to be the most painful time for her. She has been waking up a few times during the night but goes back down pretty easily. Makes for a tired mommy the following morning. It is kind of like having a newborn again except she is much heavier, more awkward to carry, and talks back. Exercises with diaper changes are still very hard on her but thankfully she does not hold a grudge to long. Once it is all said and done she is all giggles and smiles. Tonight when Shawn got home she pointed to her leg and told him "oweecise, mommy, oweecise, mommy". I always tell her with her diaper changes we have to do our exercises so I guess she came up with her own take on it. Hayden has already figured out how to roll over and tonight she surprised me when she army crawled from her room into the dining room. She is such a strong and determined little girl....I love her, I love her, I love her!!!
Back to work.
by Rachel Hafermann Smith on Monday, February 28, 2011 at 11:35pm
This was my first weekend back to work. Shawn and Hayden had a good weekend. He loves all the cuddle time he is getting now that Hayden is less mobile although she found ways to keep him busy, busy. He was looking pretty tired by Sunday evening. Our wonderful babysitter and her family brought dinner over last night and spent some time with Hayden. We are blessed to have them in our lives!! Shawn said Hayden had a blast and was really excited to see them and be the center of attention. My parents are coming tomorrow to see Hayden. She loves having people visit. It really lifts her spirits and helps break up the day. I took her to the pediatrician today. She is still hardly eating anything and is starting to look skinny. I took a log of her intake to our dietician at work and she is only getting half of both fluids and the total calorie intake she should have. She has lost about 3 lbs but our Doctor was not concerned and thinks her appetite will increase once we get her off her pain meds. We are trying Tylenol during the day and the stronger pain med before bedtime and when she wakes up...hoping this might help. She is in wonderful spirits. Smiles and laughing most the day. Can't believe we are almost half way there. Her incisions are healing up nice. Although they are much larger than what I anticipated they are pretty fine and hopefully won't leave to obvious of a scar. Funny little story from today. I was in the basement earlier and heard a thud through the ceiling. I ran up stairs and Hayden had rolled herself off her little mini couch onto the floor and army crawled her way out of the family room. I ran up to see what was going on and she was saying "mommy do it". So there I am belly on the floor army crawling all over the house with her. I only thought it was fair not to use my legs to help since she can't and let me tell you that is hard work. She is such a little tough cookie!!
Less than 2 weeks before the cast comes off!!!!!!!!!!!!!!!!!!!!!!!!
by Rachel Hafermann Smith on Wednesday, March 16, 2011 at 10:30am
Sorry it has been such a long time since I wrote an update. My only excuse is that I am EXHAUSTED. We are now less than 2 weeks away from the cast coming off and it could not come sooner. We are all "over" the spica cast. Hayden is feeling well enough now that she is not content with sitting in one spot. She would rather have mommy carry and walk around with her all day long. She has yet to sleep through the night since surgery. We are usually getting up 2-3 times a night until I take her to the guest room with me for the remainder of the night or should I say morning. For the most part Hayden is pain free. She has not needed pain meds for some time. She still eats next to nothing and is as tiny as can be. I have given up on stressing about it....I have finally accepted there is no way to force a 2 year old to eat. It is amazing to see how well she has adapted to the cast. She is all over the place. Not only has she mastered the army crawl but last night daddy found her on both feet cruising along the couch. This girl is so ready to be out of her cast. She has been much more excepting of her exercises lately. We have made a game of them and she now reminds us to do them. Both sets of Grandparents have come to visit. It was such a huge help and relief to have them here keeping her entertained. She loved all the attention!! Hayden is in a happy and fun mood today. We are doing lots of pretending today. Very thankful to hear the weather is going to be nice. Looking forward to taking her out for walks in the wagon. We are going to Florida for her follow up appointment the 2nd week in May. We will only be there for a few days. It will be nice going without the stress of surgery hanging over our heads. I will take Hayden to get an x-ray on the 23rd. We will than email the x-ray to Dr. Paley and hopefully the cast will be off the following day. Physical therapy will begin the following Tuesday. We will be going 3-5 days a week depending on how Hayden does. Knowing Hayden's determination she will be back on her feet in no time.
The cast is off!!!
by Rachel Hafermann Smith on Thursday, March 24, 2011 at 8:54pm
THE CAST IS OFF!!!!! Hayden is already getting around very well for her first day out of the cast. Within minutes of the cast coming off she was crawling all over the house. She pulls herself up to furniture and cruises around like a champ. Picked up the walker today and she surprised her daddy at the door by using it to walk right up to him. Brought happy tears to this mommy's eyes. Although we have some intensive physical therapy ahead of us it is such a relief to be rid of that cast. We tried to have Hayden throw it away today but it seems she has grown attached to it and started to cry when we put it in the trash. It has now found a special home in her closet. She is happy as can be and is doing so well. Thanks again to everyone for all your love and support.
Hayden had a successful recovery from her surgery. She started walking within 1 month from the time her cast was removed, first with a walker and eventually unsupported. She had 5 months of physical therapy...but the majority of her therapy came in the form of being a rambunctious two year old little girl. She has much more flexibility in her hip and has no pain issues at all.
The Next Step
The next step for us will be going to West Palm Beach for Hayden’s first lengthening. We are aiming for early October of 2012 for this procedure. For the lengthening surgeries Dr. Paley requires that families stay for 4 months in West Palm Beach and participate in the physical therapy there at the hospital. Physical therapy is critical for the lengthening process to insure that the muscles and tendons allow for the additional length needed. He will not perform the surgeries unless you agree to participate in the therapy. Fortunately Rachel will have ~ 2.5 months of vacation built up by that time and will be allowed to go without pay for the rest of the time. My work will allow me to work from Florida since all I need is an internet connection and a cell phone.
This will be a challenging time for us both emotionally and financially. We are weighing our options as to whether or not we will stay in the Quantum House or try renting. Staying at the Quantum House will cost us ~$1100 a month. This in addition to medical expenses and keeping up on bills at home will be challenging at the least. We are willing to make these sacrifices as we believe whole heartily that this is the right decision for our daughter. We met a family at the quantum house this past February who had to sell their house and cars to pay for just the first surgery their daughter needs. Fortunately Dr. Paley is in-network with our insurance and we are not yet in that position. We hope to put together a benefit in honor of Hayden to help with the many expenses during our 4 month stay while in Florida for her upcoming surgery in Oct of 2012. Although insurance pays for the majority of the surgery cost and her stay at the hospital, we are still going to have a lot of physical therapy sessions that won’t be covered by insurance, as well as all of our travel and living expenses while in Florida. It all seems a bit daunting, but this is something we have committed to. We are determined to see this through to the end regardless of what we have to go through to get there.
