New issue and diagnosis 9/21 and 10/3

On 9/21, Lily texted that her elbow was hurting.  10 minutes later I got a phone call from the high school nurse regarding her.  The elbow to wrist was in pain and cold to the touch. Her elbow was locked and it was painful to try and open it. She felt numbness in different areas.  Her fingers would freeze in place at certain times as well.  I took ibuprofen in to school to see how that would help.

Unfortunately an hour later I got a call again from the nurse.  She said her pain went up in to her shoulder now, and it was getting worse.  So I decided to take her to the Shawano ER.  Big mistake.

Lily is petrified of needles.  The er doc thought she had a blood clot in her arm.  They did an ultrasound with nothing.  So he wanted to do a contrasting MRI.  That required an IV.  I told the nurse she was petrified of needles and would have a hard time getting an IV in. She tried anyway, but Lily just couldn't handle it.  SO she went out and got the doc.  He came in and yelled at Lily.  Said

  "You are 16 almost 17!  You're nearly an adult!  What are you going to

do in the future when you have this issue?  You're young yet

and are going to have many times where you will need to deal with

needles.  Get a handle on it!  If we can't get the IV in, then we

can't do the MRI.  There's nothing else we can do for you if we can't

get that MRI.  I am here from Appleton ThedaClark so 

I'm not normally here.  I am the only doctor here and we only have limited staff.  

We don't have enough staff to deal with you.  I guess we'll just have 

to discharge you, and if you lose an arm, then oh well."

Seriously??!!?!  That is not something you say to any patient, let alone a TEENAGER!!!  I talked it over with Lily and we decided to try it once more.  The doc got the anesthesiologist and the ultrasound machine to find her veins and make the pain less. They gave her an Atavan.  Doc used needle to freeze area he was going to put IV in.  Lily screamed for that.  2 minutes later, the anesthesiologist started to put the IV in.  Lily was screaming. He kept digging and couldn't get the needle in the vein.  All this time she was screaming, and ended up having a panic attack. She was just shaking and screaming, and couldn't control it.  This went on for 20 minutes. Anesthiologist was yelling at her the whole time that there was no way it hurt that much.  Well I was watching. He'd pull the needle out of the sleeve and her arm, then stick it back in harshly.  Each time he did that, she jumped and screamed.  She wasn't looking, so I know it was hurting her.

At the 25 minute mark, the anesthesiologist yelled:

"I can't do this any more!  She won't hold still and I can't get it in.  I can't do it

but someone else can if they want!"

As he was yelling, he RIPPED out the IV needle that was in her arm and left the room.  He didn't clean or bandage her elbow!!  The lab tech that was waiting to draw blood ended up cleaning it (she was never able to draw blood though). She apologized as I started crying as well.

A few minutes later the doctor came in and said they couldn't do any more and she would be discharged.  I asked why the IV HAD to be inside the elbow, and he said that's where it needs to be for the MRI.  So he wouldn't even try it where her veins were stronger.  The nurse came in with the papers, and I asked who I would speak to regarding an issue.  She brought in the hospital supervisor and we talked.  I told her everything and we weren't happy. Then the doctor came in and said (AFTER we were discharged):

"Well, I did check her pulses and felt her arm.  Her pulses 

were steady and her arm was beginning to gain it's color back,

and it was no longer cold to the touch."

I found out later that he wrote that information in her file AFTER we left.  

Because of the numbess, a friend called and really pushed to take her to a different ER.  I had already called one and let them know what was going on.  We went to Bellin in Green Bay.  Because Lily is younger than 18, she was seen in the pediatric ER by a pediatric doctor.  They checked with Shawano ER, and that is when I found out he put the information about her pulses, color, and temp in her file after we left.

What a difference! The staff was super friendly!  The doc was awesome. They were able to get some blood.  She was able to go on her phone for a distraction. They used the littlest needle and prepped her arm before taking blood. They warned her when they were going to insert the needle.  She took a deep breath and they were able to take blood.  Well, until it stopped flowing.  Since they didn't have enough blood for 2 full vials, they went in the other arm. Again, same reaction.  After they left, Lily looked at me and said she never wants to go back to Shawano, and Bellin is how every patient should be treated.

Her bloodwork for clotting came back good, and her CBC showed no issues.  They sent out for testing of Rheumatoid diseases, but those also came back as negative.  The ER ped felt she has CRPS/RSD (Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy).  Back in 2015, Lily's physical therapist said she had it; however, he was unable to diagnose.  

2 years later we finally have another diagnosis.  Lily had an appointment with our family doctor this past week, and he confirmed her diagnosis.  She was put on the lowest dose of Zoloft to help.  Praying it does.  She also sees her pediatric neurologist in November.

Here's to more answers.

Surgery and a year later 8/22

Pins, view from inside foot

One month after surgery.

Before surgery

All done and wrapped up. 
Unable to take it off for a week.

Pins, view from top

Pins, view from outside foot

Well, it's been just over a year since I've updated this, and a lot has happened.

Lily had surgery on 9/7/16 in Green Bay at Aurora on the east side, with Dr. Limoni.  It went very well for Lily.  She ended up having parts of her bone from the outside of her foot removed and pinned to the inside part of her foot.  Her heel was removed, shaved  a bit, and then attached back on in a different position.  It took about 2.5 hours.  Wake up was hard for Lily, but we finally got to go home about 4 hours after surgery was done.

For several months, Lily complained of pain where some of her hardware was.  We went to see Limoni, and he agreed to remove the troublesome hardware.  On 8/22/17, she had 4 pins and 2 plates removed from the inside of her foot and the top of her foot.  No pain since!  And yes, I did keep the hardware, even though Lily won't even look at it.

Lily tends to feel her hardware when the weather changes. But other than that, her foot is doing great. No pain, and the distortion of the foot seems to be much better.

Third orthopedic specialist

Today we got to see Dr. Limoni, as referred by Dr. Schnaubelt last week. He was great.  He had already spoken with Dr. Schnaubelt and looked at her file and x-rays.  He cut right to the chase.

Dr. Limoni said we could go with fancy custom orthotics, but those would just be delaying the inevitable.  He said surgery would reconstruct her foot and realign her ankle.  It would remove the bunion she has as well. The tendons would also be adjusted as needed, with a possible plantar facssial loosening.  So she will be having 1st-5th metatarsal osteotomy, calcaneal osteotomy, and possible facssial loosening.  He said he doesn't feel she needs her calf muscle/tendon loosened, although there is some tightness there.

Because she is so young, recovery would be much better and easier for her.  The pins he may have to put in should be removable, as she should recover fully from the surgery.  The screw in her heel might need to stay there forever though.  She should not have any recurrence; however, it might move slightly as she gets older, in which case she would only need a simple orthotic insert.

He also prescribed a different medication for  her.  The naproxen did not work well for her; it gave her extreme upset stomach.  So he gave her an NSAID gel.  She has been through so much, I pray this surgery will finally cause her to be pain-free.

New orthopedic specialist

Today we saw a new orthopedic specialist.  He was great with Lily, but just as stumped as the others.  He didn't have any answers as to where her issues have stemmed from, but said there were a few things that could be done; however, he wants her to see his colleague who has more experience and surgery with special cases like Lily.

Dr. Schnaubelt gave Lily a prescription for naproxen, so hopefully that will help with the pain. He had two suggestions: a new type of custom orthotic that is more specific to pes cavus, and reconstructive surgery.  They would remove part of the heel and move the tendons/bones around to align them.

They took x-rays on both her ankles and feet today.  He compared her right foot x-ray today and the one she had done a year and a half ago.  He was really surprised at how high her arch was, and still is.  The arch has gone down some, but not enough.

 She is going to see Dr. Limoni on Thursday, when we will discuss more in depth options.  I am not sure which I'd rather do; try yet another orthotic, or just go to surgery.  We have seen so many doctors and tried so many different ankle/foot braces, including the other orthotic one, and none seem to help.  I'm beginning to thing surgery may be the only option.

The trouble with surgery is that she would have to be off her feet for several weeks, which would prevent her from being in the high school plays and musicals, which she absolutely LOVES  and lives for.  But if surgery is the route to go that will be best for her, we will go that way.

Still in pain

I'm sorry it's been a while, but there is no new developments.  Unfortunately Lily is still in pain.  She continues to do exercises that were recommended by her PT (although in my opinion she doesn't do them enough) and she is still in pain.

I am going to take her to a new orthopedic surgeon to see what he will do, and take a different route.  I am hurting that my daughter has to be in so much pain, and her pediatric orthopedic specialist/surgeon doesn't seem to want to do anything except throw her in orthotics.