How We Got Here Today

Disney World was just a glimpse of what this week was going to be like.  I would give anything to go back and have the Lizzy from a week ago. These last few days have been so difficult and I would not wish them on anyone.  I've been in a panic since Saturday.  My sister posted my text but that was two days after our frightening ER visit.  Yes, I sat for two days without telling barely anyone.

Damon and Emily left for FUGE camp with our church youth group Thursday morning. Lizzy had spent the night with nana and papa because I had to work that day.  She came home later that day and we had no problems.  She went to bed as she does every night.

I decided that on Friday I wouldn't give her any pain medicine.  I wanted to see where she was with her hip issue.  We had an uneventful day with no issues.  I could never prepare for what was to happen the next day.

Lizzy woke up as normal and ate her breakfast with her daily meds.  She takes two anti seizure meds and a birth control pill everyday. She started getting fussy by mid day, which I just assumed was her being tired.  When she woke up is when I started getting concerned.  I decided to take her into the pool with us.  Jack was in the pool already and I knew I only had a few minutes before he got out.  Hates to be by himself.  He is such a social kid.  So I put her Lizzy in her swimming suit and said "let's go girl." She cried out in pain in such way that immediately brought me to my knees.  I looked her over in a panic.  Maybe her foot was asleep.  She was crying so much that the tears were just streaming down her face.  I said to her, "hey, mom will go get your stroller and we will get to the pool that way." Lifting her left her legs and feet dangling and the weight of them was hurting her.  I got her in her stroller and rolled her down the ramp to the pool.  I lifted all 85 pounds of her and got her in the pool.  The water was so warm so I knew it would help.  It didn't.  I never want to go back to that day, the pain in my daughter's eyes was so heartbreaking.  She was looking right into my eyes.  I got her out, put a diaper on her the best I could, and threw a t-shirt on her.  I did this very quickly.  I'm not sure why, I had no plan.  I was panicked.  I texted my friend, DeDe, who is a nurse and also our family friend, Brandi, who's mom is a also a nurse.  They told me to take her to the ER.  NOW I have a plan.  By this time her knees are pulled up to her head and screams out if I try to straighten them.

We get to the ER and check in.  She is quiet and content if no one is messing with her.  We get called back into a room and I explain that Lizzy is non verbal and blind.  I also state that wherever she goes, I go and there are no exceptions.  We go through medical history, current medicines, reason for the visit, when it started, any recent falls or trauma, etc.  She asks for a height and weight, knowing she wasn't able to get accurate numbers at that time.  I tell her that I also noticed that Lizzy had black chunks in her stool the night before and she said she would give her a rectal exam.  Oh joy......sorry I opened my mouth Liz.

We sit for a bit. Playing songs on my phone or singing to her.  Talking about what is happening.

A nurse practitioner comes in and asks to examine her.  Sure, have at it but don't try to straight........ok so you're going straight for the pulling of the leg.  Lizzy just screamed and she let go.  She poked a bit at her hip and then asked if we could get her to try and walk.  I said "yes, lets!" Ever taken your kid to the doctor telling them they are sick and you get there and they act fine?  Lizzy walked (with assistance and some resistance) and even hopped once.  I felt like a big fat liar.  We put her back on the bed and she said she needs x-rays.  She felt something in the hip and it concerned her.  

We waited for a bit and finally got in for the x-rays.  One thing I want to say here is even though I am not an expert on much, nor have I had any medical training at all, they asked for my opinion at every turn. When I walk into a situation that pertains to Lizzy, I give off a "she's mine and I am an expert on her. I have had extensive training and education in MY field." I have been training for 15 years.  My training is unique.  I know my child.  And to be honest, they want to know about her too, so I am very open and willing to offer any information they need.  I use the same advice that I give my children.  In life, you be nice until you can no longer be nice.  Everyone has a line they need to draw in the sand.  I remember taking Lizzy to the ER once and they wanted to do a spinal tap on her to test for meningitis.  Damon says what will you do if she has it?  Is the medicine harmful?  Let's do this, treat her as if she has it and skip the test.  The ER doctor said ok.  Not every test is necessary.  Lizzy had been through so much that day that we were done with tests.  We said no and they said ok! 

Back to the x-rays.  One of the worst experiences of my life.  I was praying she would just pass out from the pain because it was so painful.  A woman got down to hold her legs and I said, "I will hold her legs."  I could be somewhat gentle with her little leg.  When they were done,  I sang to her some more.  Then they asked me a question that made me feel just awful.

"How long did you say this hip thing started happening?"  It's worse than I thought.  Darn.  One of the techs walk me down and says it looks dislocated.  I cannot imagine being forced to stand on a dislocated hip.  Oh. My. Gosh.  

After her recital exam, they found no blood in her stool.  Praise God for that.  They did find a little something about her hip. She started by saying that the hip looks like it was never really formed but her other theory was that it is deteriorating.  Being on all different seizure meds for all these years have created brittle bones.  She has osteoporosis.  She was diagnosed with that about five years ago. So her hip continues to slip out of the socket and if not taken care of will become dislocated.  She says you need to get an MRI and see an orthopedist.  We are given a pain script and a recommendation for a orthopedist.  

On the way home she cries because the pain is so bad.  I have to physically take the script to the pharmacy because it is a narcotic.  I get her some and she is shaking from the pain.  I feed her and give her all her meds.  She tosses and turns most of the night.  

The next day is worse with pain and I am in tears all day. I can't get on top of the pain.  The prescription pain meds aren't working.  The nurse said that I could add ibuprofen with it.  I pace all day and try to comfort her.  It is time for bed so I feed her oatmeal with her meds and she throws it all up.  I mean she is face down in it throwing up.  I lift her up and off her bed and I just cry out.  I am so angry with you God.  Help me. Now would be a great time to show me you are here.  I strip her bed and take them outside and hose them off.  Then put them into the washer.  Lizzy is still sitting on the floor waiting for me.

I clean her up and put a beach towel on her bed before putting clean sheets on it.  I lay her on her bed and she lays her head down on her pillow.  She is exhausted. She has no medicine in her body now.  I decide to wait a couple hours and see what happens.  She is still up and I feed her some medicine with a Tylenol pm.  It stays down and she is finally asleep at 11:30.  

I wake up Monday morning feeling completely helpless.  I need people to pray for us and I desperately start texting family and friends.  Her pain is worse Monday and I feel out of control.  I call her doctor that calls a pediatric orthopedic surgeon and sets up an appointment for us for Thursday.  My only thought is that I need to get her pain managed until then.  I have got to get a good combination of meds and timing right today!  

I hate that I didn't ask for prayers immediately.  Lizzy has many followers and are concerned for her.  I am sorry but I need your prayers tonight, tomorrow, and for the rest of her days.  I have no idea what her future holds.  Surgery frightens me just because she has never had it.  

Today is Tuesday and I have been able to get her pain managed.  She still winces when she is moved or is being changed but she is no longer is constant pain.  I am so thankful for your prayers.  I am also thankful my husband is home.  I tend to not panic or spiral when he is here.  

She doesn't move from her room.  I feed her there on the floor.  

I will keep you all in the loop with what will happen next.  

God bless.

Lisa