After surgery

We were away from Mary from 2:10 to 5:30 when they called us into the recovery room. It was the fastest 3 hours ever because i was nervous about seeing the external fixator for the first time. Two different mom's warned it is bigger than you expect. However, that information helped me because when i did see it it didn't look overwhelming. Maybe because its the pink!

She looked great! She had some discomfort so they gave her 2 doses of morphine then it took awhile to get the Rx but they gave her a pca (patient controlled something) since she is old enough. We heard multiple times from every person after that that she must be the only person that hits the button (not her parents) to administer the morphine. Her daddy did a great job verifying the pca was set for the prescribed Rx. (he learned to verify pain management from her delivery when i was given an epidural but it wasn't turned on.)

Then we moved to her permanent room around 6:45. Everyone that saw her said she looked surprisingly great and they wouldn't have guessed she just had surgery.

Unfortunately we are sharing with someone else so there isn't a lot of room.

We quickly had to order dinner because the kitchen closes at 7. We ordered simple food (applesauce, chicken broth, bread, Italian ice and bread) in hopes she wouldn't get sick to her stomach. it had been close to 24 hours since she ate last.

She cant feel her left leg at all yet because of the nerve block. She got frustrated once because she cant move her left leg to get comfortable but she figured it out.

Her daddy left to sleep at home with our younger daughter.

Tonight she watched TV, played games on the ipad, and i read to her.

She was a little nervous about using a bed pan so it took two tries but i think it will be faster next time.

They are keeping her leg elevated, icing it, and giving 3 doses of antibiotic every 8 hours. She started trying to fall asleep around 11 but its hard because she sleeps on her stomach and cant now. And of course its a shift change so people keep coming in now. Pain management doc just came by to check on her. All still numb and she hasn't used the pca once yet. She says she feels like a 0 on a scale of 0-10. 11:40 and still awake because she cant sleep on her stomach...

Surgery

We had an exciting morning when our 2nd, non-fh daughter came down with tiny bumps on her face. We were scared it was contagious and we would have to take her to the doctor. But the doctor on call swore they weren't since she didn't have a fever. So off to school she went. I am pretty confident that they were hives caused by stressed just like her daddy got once when we were dating and i was moving further away from him. :-)

I gave Mary a very thorough shower just like last night, she watched some TV, played catch with her daddy, took a spelling test (mean parents), and then we were off to the hospital at 10:00.

We were checked in quick but then the waiting game began. Ironically, a good friend and her son were on a tour of the surgery dept and we saw them. We assumed our surgery was scheduled for 12:50 because when they called to confirm yesterday they told us to arrive 40 minutes later than originally scheduled but we found out she wasn't scheduled until 1:30. They called us to the or at 1:40, the escort arrived quickly and we were off.

We met with the anesthesiologist who i liked a lot. He explained he was going to give her a nerve block on her leg that should last 12-18 hours. It should be tingly like when your leg has fallen asleep when it starts to wear off. She should get more pain meds then which work immediately with the iv. (he said you know once it has worn off-its very clear.)

Then our doctor came to put a smiley face on her leg which i am not too concerned about them getting correct since you can tell one leg is shorter than another:-)

Then the nurse came. She was very nice. Mary really wanted to go back on a gurney and the nurse got her one. Then the nurse went to check that everyone was ready and they were. Mary was very nervous at that point ironically we believe she was scared of needles which she won't even be a wake for...hard to say goodbye but very glad it wasn't postponed!!!

We left her at 2:10 and although the doctor told us 3 hours but we are planning on 4. Our younger daughter had a minor hernia surgery when she was 3 but that really helped us prepare for this since the process has been identical so far. The hard part is like my daughter and i have said, we aren't worried about the surgery but rather the 6 months afterwards...i cant believe this process has started. I will upload pictures later...

Wobbly legs and sloshy stomaches

Surgery is still scheduled for Thursday, May 10 but it has been bumped from 12:10 to 12:50 PST and they warn you emergencies come up so there could be delays the day of surgery.


I am NOT looking forward to this whole process starting but even though it sounds odd I will feel better when they wheel her into OR and get started. I have been counting down to this day for so long I would have a really hard time if it gets bumped to a different day altogether.


My daughter admitted tonight that she is nervous. She said on Monday her teacher asked her if she would be in school today (the day before surgery) and her legs got wobbly. We talked about being nervous. She said you know you are nervous when you sit down and your legs are still wobbly. 


I am so concerned about her being hungry and thirsty before surgery that I kept her up a little later for a second serving of dessert (yes, I said dessert) and filled her up on liquids. So much so that when I gave her her nightly massage before bed and I moved her hips you could hear all of the fluid in her tummy jostle around. Job well done I guess!


We received a lot of calls and emails of well wishes tonight which was very nice! Off to try to sleep before the big day...

Conversations

For almost 9 years I was dreading the day I would tell my daughter about her leg lengthening procedure. She of course knew she had a leg length difference but she never knew our plans to help her until I told her in February. It was just a couple of days before we went to see her specialist and finalize the procedure. Although it was very difficult at times during the conversation overall it went "well". I tried to keep it simple:

• I told her I needed to talk to her about our appointment on Tuesday because this time Dr. Scott would be telling us about his plans to make her legs more even this year.
• (Randomly we met a boy that had an External Fixator on his leg from a horrible football injury so I was able to say...) Remember that boy completing his Eagle Scout project with that "thing" on his leg? That is what Dr. Scott will use to make your left bone grow. It works like your braces and will slowly help the bone grow.
• I told her she had done so well with the difference. She didn't let it hold her back and she did what she was supposed to do (AFO, lift, etc.) but as we had noticed lately with her hips the difference was starting to affect other parts of her body. Her right side had to work harder and we needed to take care of her body and make her more comfortable.
• I said it is important with everything but especially this that she is open with us, shares her feelings, and asks any questions she has. Mommy and Daddy can explain things even better than doctors.
• I explained there is a happy ending to this story because we can do something to help her body.
• I showed her wonderful pictures I found on the Internet of kids living their regular life with an external fixator on their leg. (see recommended links)

She had amazing questions, strong feelings, and tears were shed by all. It was a very long conversation. She didn't clam up at all.

She admitted later that night that she was "horrified" when I initially told her but that she was already feeling better. I realized she was relieved to learn there was something we could do to help her. It made me question if I should have shared with her earlier. However, I think the timing came together very naturally. She previously internalized everything but just in the recent months she had started having wonderful conversations with me about her leg length difference and her body was physically showing signs it was good timing. She is torn between liking the leg length difference because it makes her special and wanting more even legs because things will be easier for her.

I have had 3 other really good conversations with mothers of a child who have experienced an external fixator. The conversations were extremely helpful because:

• they all provided very practical information on how to prepare and what to expect (they provided a lot of the content on this blog to date),
• I learned about 3 very amazing kids,
• I learned about 3 very neat families,
• They all love my daughters doctor,
• They were all very happy with the outcome of the leg lengthening procedure, but 
• They were all very honest about how difficult life with an extenral fixator is...

Lastly, I would like to share 2 conversations with my very wise 6 1/2 year old (non-FH) daughter:

• One day she admitted it was hard for her because her sister was getting a lot of attention now that the community knew about her upcoming procedure, and 
• Three days later she said she felt bad for her sister because she didn't understand why she has to go through the medical procedure. "She didn't do anything wrong to deserve it." (I, of course, agreed.)

Pre-Op and additional insights

Today was our pre-op appointment. It went really smooth with minimal waiting to see the various folks we needed to see. 


I was able to get answers to the last few questions I had:

• They wrote 3 hours and 20 minutes down for surgery which translates into the time the OR is scheduled for her. It includes anesthesiology and the surgery but you do add approx. 90 minutes for recovery.
• She is scheduled for 3 days in the hospital which translates into 3 nights.
• Everyone is different but 2 weeks for initial getting used to the fixator is typical.
• He is planning on putting a hinge on her knee so hopefully she will have some range of motion with her knee but her ankle will not be able to move until the lengthening is over and he takes the foot part off.
• Yes, insurance has approved the surgery.

First we met with the surgery dept. 

•  They covered my daughters/families medical history and took her vitals. 
• They gave instructions on how to bath prior to surgery which is of course thoroughly and don't use any lotions, etc.

Then we met with the wonderful Child Life Specialist:

• who used a photo album and actual equipment to show her the gurney, the mouth piece for anesthesia which puts you in a "medical sleep" and wakes you up when they were done, and the IV. 

• He let her feel that the part of the IV that stays under the skin is NOT sharp. He explained once it's in, there are no more pokes the whole time she is at the hospital. 
• Since she is 9 he explained there is medicine she can choose to take 20 minutes before they take her into surgery if she has too many butterflies. 
• Then we were given the tour of where she changes into her gown and stays with us until they take her to the surgery area and we say good bye. He advised to bring stuff to do while waiting since it can be up to an hour. He also suggested to bring any "pal" she may have with her. They are good to keep her company at the hospital.

• Lastly, he walked us around where she will stay in the hospital, including the play room, and introduced us to the child life specialist on the floor that manages the play room and checks out the toys from the playroom. 

Then we went to the orthopaedic dept.:

• where our doctor's nurse went over general info about the whole process. Luckily I knew a lot of the info but the following info was new to me:
• They say the fixator "clicks" when adjusted but beware it doesn't always "click".
• We will get a prescription (which is calculated by a computer program) for the adjustments every time we see our doctor for a check-up.
• We keep the original dressing on and make no adjustments until our post-op appt. one week after surgery.
• She suggests to have wheelchair delivered to hospital so we can get use to it and learn how to move her in and out by the Physical Therapists in her own wheelchair.
• She suggests to ask the hospitals if they re-use the pillows and if they don't take them with us because they are good to help prop her leg in the car, etc.
• She pointed out you want to check to see if your car can fit the wheelchair,
• She suggests to practice pointing and flexing the foot and bending knee if the fixator allows it.
• Pain meds will probably be Vicadin/Tylenol with Codeine. (We learned Ibuprofen prevents bone growth.)
• Take pain meds before 1st post-op appt. because they will do the first lengthening at the appt.

• Then we saw the Physicians Assistant that asked similar medical history questions as the surgery dept. did earlier and did a quick physical exam.
• Our doctor came in next to touch base. 
• He let my daughter practice turning the struts on the external fixator. 

• He announced they now make the external fixator in blue and pink and he believes he will have a pink on for her. That was pretty exciting since black is so ugly and sterile looking. 
• He said we will see him every 1-2 weeks during the process, no more than 3 weeks apart ever. 
• Lastly, we met the Physical Therapist who essentially brought crutches, adjusted them and taught our daughter how to walk with them (wide to make room for the fixator) and to hold them both in one hand when sitting down and getting up so you have a hand to catch a fall.

• We left with the crutches and she is to practice using them during the next week. 
• We will have PT 2 times a week.
• She is guessing it will take up to 3 months after the fixator is off before we completely stop physical therapy.
• She requested the nurse to try to track down a child's walker since it's easier to use than crutches initially but it sounds hard to find a child's walker.

Wheels in Motion (pun intended)

Yesterday the hospital called to obtain my daughters height and weight for the wheelchair company. Today they advised the wheelchair will be delivered to the hospital the day after surgery. Then the wheelchair company called to verify it was approved by insurance and confirming the delivery information. Odd talking about a wheelchair for your child.

Today we also received the letter confirming pre-op on May 2. We meet with the anesthesiology dept first then with the orthopedic team. I have been told twice that it is an all day event due to their inefficiencies. Bring snacks and things to do. There's a lot of sitting around.

The letter also confirms the surgery date and time on May 10. We are to show up two hours prior to the surgery time. The instructions state my daughter can't have anything to eat or drink after mid-night the night before. I know this is required for surgery and we will all be so nervous we won't have a desire to eat but it sounds difficult at the moment.

On one hand it's comforting to know that everything is getting ordered, approved, etc. and all in motion but it is also very odd that it's all officially beginning after all this time of knowing it was going to happen some day (9 years from when we first learned about it.)

There's a light at the end of the tunnel is our mantra.

Class Presentation

Below is the presentation my daughter will present to her 3rd grade class two weeks before she starts the leg lengthening procedure. She created it and my hubby added the pictures. We thought a presentation would help get the accurate information out to the community, and provide the opportunity for the kids to ask questions. She is very excited about presenting it.