Below is a journal of Hayden's second hip surgery she had in June of 2016. This was pulled from Facebook post that were made at the time and included here to complete her story.
June 29, 2016
June 29, 2016
It has been a busy few days here at West Palm Beach. We arrived Saturday afternoon and stayed in a hotel that was just a 5-minute walk to the beach. ⛱Weather has been beautiful. The girls have had a blast and spent most of their time at the hotel pool🏊 which felt more like a giant hot tub. Hayden had a bad reaction to something the 2nd day we were here. Not sure if it's a delayed reaction to antibiotics, sunscreen, detergent, or what. We were very concerned if may cause surgery to be canceled. Paley said the ultimate decision would be up to anesthesiologist if we could go forward with surgery.
Monday was pre-op with Paley and as he showed us her CT scan it was very obvious how badly Hayden needs this hip surgery and why her hip dislocates so easily. We waited 3 1/2 hours to see Paley which is actually one of the shortest waits we have had in the past 6 years of coming here. Sophie has been such a trooper. Couldn't have asked for her to be better. She's had such fun getting to know our extended Paley family...so many great kids to play with!
Tuesday we had pre-op clearance with the anesthesiologist and blood work up. Thankfully hives had gotten much better and anesthesiologist gave us the OK to have surgery. Hayden was excited to get her purple octopus for her bravery. She named her "Ollie" and she got to take her back to surgery. Hayden was fitted for her brace that she'll be in 24/7 for the next couple months. She was pretty excited about getting it...we will see how long she feels that way about it. 
Last few weeks Hayden was very nervous and tearful about surgery. It's the first time she is at an age to question and wonder what surgery will be like and how she'll feel after. There have been really tough questions she's asked. Being around the many Paley patients at the Quantum house has been extremely comforting to her. It has put her at ease knowing so many other kids have had to do the same thing and are doing so well. And your kind of the odd man out if you're not rocking a cool wheelchair or walker. Hayden loves getting to be around so many other kids who are in shoe lifts and wear the same "warrior scars" that she does. She told me last night that when she's here she not embarrassed by them and she thinks they are beautiful (melt my heart ).So now my baby girl sleeps and we wait. We anticipate surgery to be around 3 hours from beginning to
end if all goes well.
Surgery day is today. They took her back about 30 minutes ago. Hayden could not have been more brave or calm. This is the first surgery we did not go into the OR room with her. a very hard decision for us to make but I feel it is the safest for her to limit people in the OR to those who will be participating in her surgery. The PA just came out and told me how amazing Hayden did. She said she was calm, enjoying the music in the OR, and did better than most adults.
She's a trooper. All smiles while she waits for Big Sissy. She keeps asking where Hayden is...not used to be apart from her.
Just talked to Dr. Paley. Hayden is out of surgery and starting to wake up. He stabilized the hip the best he could but found one position she still slightly slips out when in. He tried repositioning the pelvis in at least 10 different positions but there is just not enough coverage to prevent it from slipping. He also tightened up some of her muscles to the help for better stabilization.
Paley is never happy unless it's perfect. What does this mean for her future... we will be very cautious to maintain her in an abduction position during next lengthening It should not cause her problems in her day to day life.
We ultimately are leaving with a much more stable hip and are confident no one else could have done better with the severity of Hayden's hip deformity. Paley brought in one of his partners to scrub in just to make sure there were no other options. Surgery went much longer than anticipated because of the amount of time he spent trying to get the hip not to dislocate.
Of course, we are disappointed but are very thankful he was able to stabilize it as much as he did and so thankful she made it through without complications.
Can't wait to wrap my arms around her!!!
Please pray for good pain control.
Paley is never happy unless it's perfect. What does this mean for her future... we will be very cautious to maintain her in an abduction position during next lengthening It should not cause her problems in her day to day life.
We ultimately are leaving with a much more stable hip and are confident no one else could have done better with the severity of Hayden's hip deformity. Paley brought in one of his partners to scrub in just to make sure there were no other options. Surgery went much longer than anticipated because of the amount of time he spent trying to get the hip not to dislocate.
Of course, we are disappointed but are very thankful he was able to stabilize it as much as he did and so thankful she made it through without complications.
Can't wait to wrap my arms around her!!!
Please pray for good pain control.
Post op day 1:
Hayden has been a trooper. Last night was a rough one...we slept for maybe a total of 2 hours due to the usual hospital interruptions, pain, and lots of foot discomfort. Not sure if she's experiencing nerve pain or spasms from all the manipulation Paley had to do during surgery but the foot pain has continued all day long. Shawn and I have been alternating rubbing her feet continuously. It seems to be the only thing to really offer her much comfort.
She did need a bolus last night because of her poor urine output. Her blood counts
Hayden has been a trooper. Last night was a rough one...we slept for maybe a total of 2 hours due to the usual hospital interruptions, pain, and lots of foot discomfort. Not sure if she's experiencing nerve pain or spasms from all the manipulation Paley had to do during surgery but the foot pain has continued all day long. Shawn and I have been alternating rubbing her feet continuously. It seems to be the only thing to really offer her much comfort.
She did need a bolus last night because of her poor urine output. Her blood counts
Shawn stayed with Hayden while I took Sophie back to nap and get a little rest myself (I anticipate another 2 hours of sleep tonight). While I was away PT came to get Hayden up in the wheelchair for the first time. As expected it was really painful for her but she did great and daddy took her for a walk.
We are still a ways from being discharged. Hayden still has a drain, epidural, and getting IV fluids and pain meds. All need to go away before she can leave.
Our nurses have been wonderful! They are taking such great care of her.
The practitioner just stopped in and we talked about the constant foot pain. She ordered some Valium and it gave Hayden instant relief. This is the most comfortable I have seen her...hence the reason why my fingers can type this update and not need to be massaging her feet.
She's an extraordinary kid and I am blessed and privileged to be her momma!!
Post op day 2:
It's been a busy day. Epidural and foley are out. Already went potty on the toilet (not an easy thing but she did great). Had a bed bath and has been up in wheelchair enjoying the playroom.
Dr. Paley rounded this morning. The plan is to get brace modified. She will be in her brace 24/7 for 3 months not the standard 6 weeks. She'll be in it longer because the hip is still slipping and we must keep her in an abduction position while healing. She's non-weight bearing for 6-8 weeks. We will get X-rays in 6 weeks and email to Paley. We will return to Florida in 3 months so Paley can physically exam her hip.
Hoping to get discharged tomorrow if we can manage her pain with oral meds.
I was able to capture some smiling pictures today... Only my little Hayden can look so beautiful 2 days after major surgery.
It's been a busy day. Epidural and foley are out. Already went potty on the toilet (not an easy thing but she did great). Had a bed bath and has been up in wheelchair enjoying the playroom.
Dr. Paley rounded this morning. The plan is to get brace modified. She will be in her brace 24/7 for 3 months not the standard 6 weeks. She'll be in it longer because the hip is still slipping and we must keep her in an abduction position while healing. She's non-weight bearing for 6-8 weeks. We will get X-rays in 6 weeks and email to Paley. We will return to Florida in 3 months so Paley can physically exam her hip.
Hoping to get discharged tomorrow if we can manage her pain with oral meds.
I was able to capture some smiling pictures today... Only my little Hayden can look so beautiful 2 days after major surgery.
Post op day 3 (but feels like day 8):
We thought we would be getting discharged but, her drain still had too much output, her hemoglobin was down to 7.4 and she had required some iv pain meds through the night. So we are here another night. She started iron today and we will recheck labs in the morning....fingers crossed.
An extra day did not stop us from having a productive day. The Mighty Hayden stood up on her own with her walker and transferred to the wheelchair! She was absolutely terrified to do it but, she found the courage as she has so many times before and overcame! The new brace is much better than the abductor pillow and it allows her more mobility.
We spent most of the day out and about. Hayden had lots of fun in the playroom beating me at video games and we took many strolls around the hospital campus just to escape the hospital room.
They were able to pull the drain this evening and we've managed her pain with oral meds all day...hooray!
She is turning the corner and I am hopeful each day will be easier for her.
Thank you, everyone, for your prayers and encouraging words.
We thought we would be getting discharged but, her drain still had too much output, her hemoglobin was down to 7.4 and she had required some iv pain meds through the night. So we are here another night. She started iron today and we will recheck labs in the morning....fingers crossed.
An extra day did not stop us from having a productive day. The Mighty Hayden stood up on her own with her walker and transferred to the wheelchair! She was absolutely terrified to do it but, she found the courage as she has so many times before and overcame! The new brace is much better than the abductor pillow and it allows her more mobility.
We spent most of the day out and about. Hayden had lots of fun in the playroom beating me at video games and we took many strolls around the hospital campus just to escape the hospital room.
They were able to pull the drain this evening and we've managed her pain with oral meds all day...hooray!
She is turning the corner and I am hopeful each day will be easier for her.
Thank you, everyone, for your prayers and encouraging words.
Post op day 4:Hayden's hemoglobin was 6.9 this morning. Plan for the day now is blood transfusion and get discharged after!!!
She's got another hour to go before transfusion is complete and she'll need to be monitored a bit before we can leave. Her pain is well controlled and we are getting pretty good at getting her to and from the bed, wheelchair, and the bathroom. I'm getting quite the upper body workout...thankful I am able to do it though.
Looking forward to posting pictures from the quantum house tonight!
Happy 4th of July!
Things have been busy since being discharged from the hospital on Sunday. Shawn is needing to work while here so I have had my hands full taking care of both the girls...hence I am just now getting a chance to update.I believe I last left off with Hayden getting a blood transfusion on the day of discharge. After getting her transfusion They watched her for a bit and then off we went. The quantum house is on hospital grounds so Hayden and I strolled on over.
What a great feeling it was to walk through those doors. It is a home away from home for us and we are so grateful to all those who provide activities for the kids, meals every night, and a comfortable place to lay our heads each night. It is such a unique experience here at the house. The majority of the families are Paley patients. They come from all corners of the world...currently here from Italy, England, Poland, Mexico, Argentina, and many states in the US to name a few. I believe there are a total of 22 families here right now. Sitting in Dr. Paley's office the patient population is even more diverse. We may struggle at times to communicate with one another but the bond we share is instant. I am grateful to have crossed paths with all of them...their support and understanding is a source of strength.
Hayden is doing really well all things considered. We are now a week out and I'm amazed at how well she is recovering. We had her follow up today. Everything checked out. Her incision looked were suppose to be spending the next week doing therapy here but, because She still has a tendency to dislocate posteriorly Dr. Paley does not want her to do any physical therapy. He is wanting to allow scar tissue to form and encapsulate the hip where he tightened her muscles to help stabilize. It was explained as "intentional negligence"...usually the goal of physical therapy is to keep the body moving so scar tissue will not form, in Hayden's case we want scar tissue to form.
Since we aren't needing to stay for therapy we are coming home a little early! We are all ready to come home and I know Hayden will be more comfortable recovering there.
Love to you all!
Hayden working hard on getting around without her wheelchair. Little by little, she's getting there.
We are home!! We had an early flight yesterday...when I say early I mean our alarm sounded at 3am. Sophie is NOT a good flight companion. We were definitely that family...Shawn did a great job with her but, I am sure everyone wanted to applaud when we walked off that plane.
Hayden, on the other hand, did great. I was worried how she would do only a week out of surgery but she was a champ!
Nothing like coming home. I think just being at home has put Hayden in a new mindset of "I can do this". She is really starting to use her walker and my back is very thankful. She is one tough girl!
We are glad the surgery is behind us. I think sometimes the anticipation of a big surgery can be the hardest part. We are hopeful that we can give Hayden a couple year break from surgeries and that no complications arise between now and the next lengthening.
A big thank you to our wonderful neighbors Mike Saeger and Katie 'Moro' Saeger for watching the house and giving us such a nice welcome home. Hayden loved the balloon and we all enjoyed the cookie cake!
So now we just help Hayden through her recovery and get back to normal life.
I can not say enough how grateful we are for all the support you have shown us. We feel the love and it makes such a difference for all of us. I sat with Hayden the other day and let her read all the comments on the post thus far...she had a smile from ear to ear.
Hayden, on the other hand, did great. I was worried how she would do only a week out of surgery but she was a champ!
Nothing like coming home. I think just being at home has put Hayden in a new mindset of "I can do this". She is really starting to use her walker and my back is very thankful. She is one tough girl!
We are glad the surgery is behind us. I think sometimes the anticipation of a big surgery can be the hardest part. We are hopeful that we can give Hayden a couple year break from surgeries and that no complications arise between now and the next lengthening.
A big thank you to our wonderful neighbors Mike Saeger and Katie 'Moro' Saeger for watching the house and giving us such a nice welcome home. Hayden loved the balloon and we all enjoyed the cookie cake!
So now we just help Hayden through her recovery and get back to normal life.
I can not say enough how grateful we are for all the support you have shown us. We feel the love and it makes such a difference for all of us. I sat with Hayden the other day and let her read all the comments on the post thus far...she had a smile from ear to ear.
Brought recovery to the lakeside...and they're biting!
🎣
🎣
Just love this one! No filter needed for these 2 cuties. She's following in Big sister's footsteps.
Here's Hayden's companion for the next 3 months. Still haven't come up with a name for her (fixator was named lion 🦁). She is quite attached to it at this point and is very anxious when we take her out of it to bathe her. I will say it's much better than the spica she had for her 1st hip surgery...allows for much more mobility.
It's a girl thing...
August 11, 2016 ·
6 week post op update and First day of 2nd grade!!!
Dr Paley emailed us this morning to let us know hip is healing great and Hayden can begin bearing weight!!!!!
She doesn't know yet. I am so excited to tell her. We are curious to see how she does. She literally has not put that foot down for 6 weeks.
I get to go and talk to her class today. Hayden's been extremely anxious and worried the kids will be mean to her about her brace and walker. Her teacher felt it may help if I come in to talk to the class. This made Hayden feel much better about her first day of school. We put together a slideshow of pictures from all of Hayden's past surgeries...all pics Hayden picked out. I going to bring in her beads of courage to show how brave she's been and we made a beaded keychain for her classmates. Hoping this helps the class to understand what all Hayden's been through.
Well, that's all for now friends.
When you are a working mom who leaves the house by 5:30am and you can't deliver the BEST news to the most amazing and brave daughter ever....
September 26, 2016 · We had a great visit with Dr. Paley. He was very impressed with how well her hip has healed and how strong she was this early into recovery. Released to full activity...use common sense (uh oh).
We are still candidates for the internal precise lengthening which we had thought we wouldn't be since her hip was not fully stable. Upon physical examination, he could not appreciate her hip dislocating!!!!!
I could not be happier.
...and record-breaking for least time at a Paley appointment...2hrs 45min. Whoot, whoot!
I could not be happier.
...and record-breaking for least time at a Paley appointment...2hrs 45min. Whoot, whoot!
