1 Year Later

Hey Everyone!
So sorry for the really late update.
A year ago I was still in a coma in Mexico, and now things have never looked better. I continue to gain strength every day and am able to do more and more things. I am still pain free and have not had any relapses since February. The relapses I had in the beginning of the year did not last very long and got better by themselves so I didn't have to receive any boosters.
I am really enjoying being able to play piano and guitar, but am going to wait a bit longer until I tackle my bass as it's harder on my hands.
I have continued to write songs and now have a collection of 9 songs that I would love to one day make an album with.
Life for me has changed dramatically and everything is so very new and exciting. I could not have dreamed for a better outcome and I feel so incredibly blessed. I am able to do so much more than I could previously and am able to look at planning for my future. I have applied to enrol at Waikato University next year where I am hoping to study Music and English. I am planning to start with one paper in semester A and see how it goes, taking things very slowly as I am still in the rehabilitation stage.
The changes in my life and the way that I feel are absolutely outstanding. I never realised that things could feel so great. Thank you so much to all my doctors, nurses, family and friends and all the people that have supported me on my journey. Thanks to you, I now have a life to look forward to, a life worth living. I am eternally grateful for all your help. Thank you so very, very much.
Lots and lots of love,
Emma xx

Merry Christmas!

Hey everyone!!
I just wanted to thank everyone so, so much for all your support during my journey to recovery. Knowing that there are people that care so much really helps! So thank you all. I also wanted to give a huge thank you to everyone that has helped by donating, making my treatment possible. It means so much!!
Well, I thought it’s been awhile since a blog entry and I should let you all know how I’m doing. I feel AMAZING!!! Better than I have in years! I still have to take things really slow and continue to recover, but I am feeling really, really great. I have been able to play piano and guitar again :p which I am really enjoying. I’ve even started to compose a song :D I have also been able to venture out and make it to a few christmas barbeques which has been exciting, as it was something I wouldn’t have been able to do previously. I know it’s still early days and I have to take things slow, but so far the trip has been a complete success. I am so very grateful to the fantastic team of doctors in Monterrey for giving me my life back. I hadn’t been able to remember, or imagine a life without pain, and they have made it possible for me.
I also thought I should let people know, I have a new kitten :p Her name is Jazz and she is ADORABLE. Though a little naughty – she loves to climb our Christmas tree. Jazz and Fred (the turtle) are still sorting each other out, hehe.
Well thank you all again! I hope you all have a really great Christmas and also if you’re ever in the area, I’d love for you to come and visit!
Lots and lots and lots of love,
Emma xox

Home!

We are home at last and it felt so good to touch down on NZ soil! We flew from Monterrey to Houston, on to LA then Auckland and arrived home a few days ago. Emma travelled really well all things considered, as it was a very long way to go. We were all so excited to see Aleishia and Luke who had done so well at home under trying circumstances. Air New Zealand staff were absolutely fantastic to us and very helpful and considerate of Emma's condition (which was a welcome change after going through so many US security checks).

Emma is really pleased to be home and is continuing to improve each day. She will have medical check-ups this week and over the coming months, including an ENT Surgeon for the trac tube removal this week. She tires very easily but is sleeping amazingly well – we are not use to seeing her sleep 8 hours at night so a welcome relief! Emma still has some recovery from all her complications, so she is needing to go quite slow at things but each day she becomes more like the Emma that we know and love.

As part of the research study, we were advised to refrain from asking Emma how her RSD pain is during or after the treatment, but to allow her to tell us how she feels in her own time, if she wants too – and this has been very difficult!! We are hoping that Emma’s friends will also be able to refrain from asking her too. However, soon Emma will be able to update you all on her experience and progress from her point of view.

All of the prayers for Emma and the great support that we received from so many people have helped us all so much through this difficult time. We thank you all. Our prayers have been answered and it is so good to have the whole family back together again.

Discharged from Hospital!

Emma has continued to do really well and has been discharged from the hospital and is now recovering at our hotel. We have had Doctors' visits here at the hotel, but more for friendly visits rather than necessity which is great. They (and us) are amazed how quickly Emma is recovering from all her complications; she is chatting heaps, laughing & smiling, walking well, sleeping at least 8 hrs at night and generally feeling really well, although she tires easily. We have had small daily expeditions to Emma's favourite store - which of course is the pet store (the mall is across the road from our hotel) where there are lots of baby Fred's.

So GREAT NEWS - we are planning our travel back to NZ which is so exciting, and fantastic to see Emma well on her road to recovery. We are hugely grateful to Dr. Cantu, he is truly a wonderful Doctor with great expertise in treating RSD patients. Also, we are very thankful for the great team of Dr's here who worked so hard for Emma - and she kept them on their toes for many weeks!!
We are also very thankful for the wonderful friends we have met here, especially Sarah (Mum to Jessica who is also an RSD sufferer), who has given us so much help & support to keep us going through these past difficult weeks.

FANTASTIC NEWS!

Well it has been quite a while since the last update and that is because Emma has needed us to be on hand 24 by 7 but each day she has improved greatly.

She was discharged from the ICU and has been back on the 8th floor for a couple of days!!!! YAY HUGE EXCITEMENT!!!! She has continued to improve daily and is well on her path to recovery since waking a week ago. Her infections are under control, she is still on antibiotics but hasn't had a fever for a few days, and the markers in her blood, e.g; white blood cell count, are much better and near normal. Em's lungs have improved greatly, she is off the ventilator and after a couple of days on a T-tube that gives oxygen & humidity, she is now fully breathing on her own. She is being slowly weaned from the final sedation medication she has had for the last 5 weeks, so this has been happening slowly and will continue for a few more days. Emma has developed a high tolerance for the sedation medication and in the past week has been on a level of sedation that would send the "average" person into coma, but Emma is very much awake and alert with the current level. This was anticipated and is the usual case in RSD patients as they need a much higher level of sedation to send them to sleep and keep them asleep - all to do with how these patients develop an amazing inner strength to cope with their unrelenting & severe level of pain! So even though Emma is being weaned very slowly from the drugs, she is still having drug withdrawal episodes but as the days go bye she is handling these much better.

Emma has continued to have neurological tests; yesterday she had her 2nd MRI, her 4th EEG is scheduled for this weekend, and she has had an optical nerve test. Every EEG gets better than the last one and they are now showing no seizure activity and the optical nerve test showed normal vision. Emma's 2nd MRI (15 days after first MRI) surprised the Doctors (and us) as they were expecting very similar images to the first, either the same, slightly better or slightly worse, but the images are now FANTASTIC!!! They show that 95% of Emma's brain lesions from 15 days ago are gone - all healed! For a minority of patients, they may take many months, years or never make a full or good recovery, so thankfully Emma is one of the lucky ones and the disease was diagnosed very quickly and she responded well to the intensive steroid treatment. She is communicating and moving normally, has a good memory and there is no sign of any impairment. She has been spending a lot of time listening to music and today enjoyed watching a cartoon video. Tomorrow she may spend some time sitting in a lazy boy chair, but weight-bearing is still some days away.

After such a lengthy ordeal, we are so relieved and grateful to the many wonderful Doctors here that have enabled us to have our old Emma back with us again!

Update

The 5 day steroid treatment for ADEM went without a hitch. (1 gram of methylprednisolone per day) Emma was well sedated, had no fever, and hardly moved a muscle for the 5 days. The surgeon is very pleased with her progress and her stomach and small intestine function improved so that by yesterday she was being feed entirely via nasal tube to the stomach. Yesterday they began reducing the sedatives and soon she began to wake. Like the last times she had plenty of energy and it was difficult to keep her calm and still in bed and to not have her trying to pull tubes and equipment. The waking was slightly different because of the tracheostomy tube which allowed some sedatives to still be used - the neurologist wanted the waking to be very slow. The latest EEG's show no sign of seizure activity and Emma has become more and more awake over the last 2 days. Unfortunately the steroids strongly suppress the immune system and last night she had fever again. There are a few possible infection sources and broad spectrum antibiotics have been started while they wait for the lab to identify specific cultures. So far the signs regarding the ADEM are very positive, she can follow commands, move all limbs and see well and she has improved each day as the sedatives have been reduced. She has no trouble remembering her situation, her friends and family and even some events from the last waking. The trac tube means she can not talk so communication is reduced to facial expressions and hand squeezing. One of the possible infections is in her bronchial tubes so breathing is still difficult but she is controlling the ventilator herself and producing about 60% of the energy for each breath.

Thank you all so much for your great support.

More Complications

Unfortunately Emma has suffered another huge set-back. Throughout the entire coma she has had several events in which she reacted differently or presented different symptoms than the usual (textbook) responses. She had been doing great, she was extubated and moved to a recovery room and had been awake for 4 days (and literally awake as she only slept for around 6 hours in patches of 10-20 mins). She was drinking and eating OK after this initially being very difficult. She was anxious and restless most of the time, so we needed to reassure her that everything was fine. However, unfortunately Emma had 2 seizures in her recovery room so she was moved back to ICU for closer observation. When she had more seizures in ICU only 10 hours later (whilst being on anti-seizure meds) they only had one option and that was to re-intubate and sedate her again to keep the seizures under control. Following the seizures she had a very high fever for almost 15 hours. The fever could be caused by seizures or by an infection. Investigations have been extensive including an MRI scan which clearly showed lesions in the white matter of her brain from an inflammatory process. The diagnosis is Acute Demyelinating Encephalomyelitis (ADEM). This is an extremely rare process (so rare that the Neurologist has only seen it a couple of times in this extensive career) which can happen 3-4 weeks following sepsis (which Emma had on Day 2 of the coma). The treatment for ADEM is a 5 day course of massive doses of steroids which they started this morning. In Emma's case, ADEM is an inflammation which has caused damage to the signal pathways in her brain. The negative side of using steroids is that it suppresses the immune system making it harder to fight infections so last night Emma underwent a 4 hour laproscopic abdominal surgery to make sure that there was no residual infection from the previous surgery. They removed some fluid that was not obviously infected but may still have been a source of infection, it is being cultured now, and early indications are that it is negative . Fortunately the ADEM process in the brain was found very soon after it began (within 3-4 days) and so the Doctors have given Emma a high chance of success. Emma now has had a tracheotomy and will remain sedated for a period of 7 - 10 days after which she will have another MRI and be woken when the Doctor's feel it's appropriate.

As you can imagine we are very upset by this turn of events but continue to hope and pray that Emma will again show her resiliency and come out on top!