Home at last

On Wednesday at 2:30 PM Emily and I walked in the door. My friend Karen came and helped me pack Em's room and bring it back. I'm not sure I could have done it without her because in 3 weeks we had compiled enough stuff to fill Karen's mini van. Emily walked in an sat on the sofa, the next time I checked she was fast asleep. 3 hours later she woke up and said that she was hungry. Emily's pain was a little out of control in the hospital so I've been trying to balance it again now we're home. Today Emily got up and washed and dressed herself, walked (with AFO) into the kitchen for breakfast all pleased with herself. It's been a long road and I know we're just beginning but I feel like Emily has a chance at a normal life for the first time in a long time and therefore I have hope. Tom was shocked to see us home because I didn't tell him that we were coming so that he'd have a surprise. It's good to have my family together again.

A hop, skip and a jump

The AFO is a plastic brace which is a mold of Emily's leg and covers her foot and back of her leg to her knee. It velcros in place in 2 places and helps Emily to walk. It's actually very pretty because it has pictures of butterflies all over it within the plastic. Emily is unable to lift her foot on her own so the AFO acts as an ankle, Emily is able to keep it on for an hour at a time and she's pretty mobile. She loved having her Step-Brother Zach visit last weekend, she walked him round the unit introducing him to the nurses. I've been told that no one knows if Emily will ever recover muscle function at the front of her leg and therefore an AFO may always be needed. On the one hand I'm delighted that such a thing exsists so that she can gain mobility but I'm also struggling inwardly with this incredible loss and my own anger as I see her struggle. She's 11 ...

A fresh start

A new day came full of expectation and hope and we grabbed it with both hands. Emily got up once more and walked shakily to PT where her work continued. By the end of the weekend she had recovered her strength and a home date was set for last Wednesday. In 3 weeks Emily had gone from having ultra tight hamstrings and one leg stuck up in the air to somewhat looser hamstrings and both feet on the floor. Goodbye walker, wheelchair and cane and hello happy feet!~

A set back

By the end of week one I thought that Emily may have a UTI so I had the hospital do a urine culture. Nothing exciting grew at that time so we carried on regardless. A week later Emily began to look flushed and had a headache. A new urine culture showed a pretty massive infection and by Sunday night she began to get a fever. All Monday Emily felt very unwell and antibiotics were started. Late Tuesday afternoon her temperature hadn't broken and she looked terrible. I was sitting stroking her hand when it happened ... her eyes just rolled back for a second or 2. When the rolled forward she shuddered and seemed confused. 2 more smaller ones followed and I alerted the nurse that I thought Emily had had a seizure. Within about 20 minutes she sat up in bed and her fever broke, after that she actually felt slightly better, I think her body just had to shut down for a second. IV antibiotics were started as did the intense burning in her arm. Within a day her IV infiltrated and her hand was the size of a baseball, again I had the IV removed. This was Emily's lowest point. She questioned god and her desire to continue living so I just sat and held her.

The epidural

The epidural was placed and Emily was bought back up to her room. The epidural was taped in place and the tape continued up her back and over her shoulder. An IV was in the underside of her forearm. It was very apparent from the time she woke up after surgery that this was going to be a challenge. Foot pain was almost taken over with lower back pain and pain from the IV site. Potassium was in the IV fluid and it was burning Emily's arm so after a rough few hours I asked them to remove it. PT started and I am proud to say that despite the uncomfortable epidural Emily got out of bed and walked down the corridor with her walker. She got up every time she was asked and never complained. I would deliver her to the PT room looking as white as a sheet then walk back to her room with my head down in despair. I HATED seeing Emily go through this and wished more than anything that I could be the one being stretched and pounded in there rather than her. I can't put into words how proud I am of her and how sorry I am that this has happened. By Thursday Emily had her AFO (brace) and some funky new white shoes and she was walking with her foot on the floor. Totally amazing!

The beginning

After just over 3 weeks our stint at Cooks is now over. Allow me to update you ...

Week one went smoothly. I met with many, many medical people during those first few days. All wanted me to explain in detail what's been happening with Emily since day 1. As Em was taken off to PT I met with everyone to discuss a possible plan of action. Em has a cute little room with its own bathroom and little plastic bed for guess who!! By the end of week 1 I had decorated it with a flamingo theme (Emily stands on 1 leg) to remind her how far she'd come. Emily started PT with avengence. It was very cool how they used play to distract from the chore of intense exercise, Emily thrived on it. By the end of week one she had every nurse wrapped around her finger and her leg was beginning to come down. On a pain scale of 1 to 10 Emily reached 10 most days and as the days went on it became harder to bring it down again. Monday of week 2 she was taken to surgery to place an epidural and to have Botox in her calf. From what I had read Epidurals fail to block pain in RSD sufferers but I decided to let them try, just one in case it worked and left her with no pain for a while. The plan was to place the epidural so that the pain was reduced and then the PT ladies could work Em's leg really hard to get the Botox working and therefore get her foot to the floor so that she could walk.

Almost home

It's Sunday and today I can see an improvement in Emily. The antibiotics are working well and her hand is beginning to be less painful. We has to switch to oral antibiotics rather than by IV after her hand blew up to almost 3 times the size and they seem to have done the trick. Today we ate lunch outside on the hospital patio and she got some colour (english spelling) back in her cheeks. Emotionally she's drained but still trying to be positive.

Wednesday is the pencilled in day that we leave rehab and I am so ready for that day to come. I am already working on a strict exercise schedule for both Emily, Tom and myself in order to keep up with the therapy. The vending machine diet has been cruel to me once again and I'm ready to get to work with Emily and Tom to get our bodies healthy and fit.

Emily walked in the prayer garden today with no cane or walker. She was a little wobbly but she did it beautifully! The AFO (brace) works well as an ankle but we have to get Em's foot used to walking in it. Without the brace Emily has no control of her lower leg and foot. I'm filming and photographing Emily so will post some when I get home :)

Thank you everyone for your kinds words, it helps to know I'm not alone ...

Why?

A devastating week ... Emily is suffering from a severe UTI so was placed on an IV. We've had everything from chronic pain, fever, seizures, a hand the size of a baseball with huge fingers, hospital politics and exhaustion. By today Emily was questioning not only what kind of god would do this but also why she's alive. I questioned if I could keep up this pace without losing my mind. Tomorrow is a new day with new possibilties and we will embrace it. I don't know the answers, I just have to keep putting one foot in front of the other ...

New medication

An issue I've found while living in the hospital with Emily is that she has so many doctors. Each again has a differing opinion and they all want to prescribe new drugs. Each promise that the side effects are low and that they would suggest that we try them. Currently Emily is on Gabapentin and Norco. Elavil was added Wednesday and they want to add Lyrica on Monday. Today when I woke up I look across at Emily sleeping and saw that she was in a funny position and she was a dusky grey and for a minute I was frozen, I actually thought she was dead. As I was about to spring up a nurse came in and seeing the look on my face she checked Emily's vitals. I was relieved to here that all was well but I have to say that I shook for an hour after. Her blood pressure was lower than usual but got back to normal once we got her to wake up. I have decided to look into alternative methods of treatment because I can't watch her vanish into the fog of medication anymore. Many strides forward have been made in the last few weeks physically but mentally I feel that we're going backwards. None of the medications we've tried have actually ended the pain so I think it's time to think outside the box.

I'm home for a while tomorrow so I'll post a proper log of our hospital stay and also the latest pictures.

The end of week 1

Monday was our 1 week anniversary and it was marked but Emily having surgery. It was decided that because Emily had such severe pain an epidural would be placed. At that time several blocks and the botox was done. 3 hours after surgery Emily was wheeled into her hospital school room to start work. Physical therapy and occupational therapy followed before she finally crawled slowly into bed. Brutal yes but it's working.

Emily now has a very full schedule which starts at 7:30 pm and ends at 3:30 pm. Mostly her therapy is based around play which is wonderful because there are times when she doesn't realize that she's doing PT. The Easter egg hunt was a prime example. Eggs were placed in hard to reach places and the kids had to find them. Emily walked with her cane and a gait belt held by "Suga Mama" who is Em's new therapist and she's a fresh a breath air.

Thank you to all have have donated to Emily's fund, I appresiate each and every penny. Pete will be putting together bathroom plans for before Emily gets home.

Update

This week has gone by in a blur. Evaluations, doctors, doctors and more doctors. Physical therapy, occupational therapy, Neurology, psychology, play therapy, school, breakfast group, exercise group and a whole array of people probing about past events. All therapy is based around play and everyone around us constantly smiles. It's a place where miracles happen and I feel lucky to have Emily there.

Today Emily got her foot to the floor for the first time in 6 months. She "walked" for 30 minutes with her foot down which was a massive stride forward.Her pain level is flying high right now but Emily is coping with it as best she can.

Day 2

Evaluations and more evaluations.

Another day filled with smiling people, doctors, nurses, PT, OT and childlife. Emily feels safe in this enviroment and this makes me really happy. Tomorrow will be a big day as far as how we progress forward, I'm interested to hear what they come up with.

Medication wise I know we'll have to give more and I struggle with this. I've worked hard to get Emily to this point and the thought of losing her in a medication fog doesn't fill me with happiness but I'm focusing on the big picture right now as best I can.

Rehab, Day1

Today seems to have gone on forever. I ran home to kiss my son and I'm about to zoom back to my comfortable? plastic pullout bed.

It was a good 1st day in rehab. Lots of pulling and poking, many questions and a ton of new faces. The RSD it seems has taken hold of Emily's foot. I knew it had so I wasn't as disapointed as her Neurologist who had hoped that he'd see improvement. I haven't seen 1 frown all day which is amazing to both Emily and I. The nurses actually want to be there. Tonight, Emily is comfortable ...

Day 1 down, I'm happy.