Ducks!

Some improvement today in terms of the flu! Michelle has not had any vomiting today, got some sleep in, and sounded a lot stronger by this evening. She even made it out of the house for her first non-appointment since the kidney infection. She went on a short walk to see the ducks near her home with her little guy. The duck walk is "their" thing, so it was big deal for them to enjoy this together again. I'm praying that moments like these will increase as Michelle grows stronger and overcomes the setbacks of these past 2 weeks. Anyone who knows Michelle knows how positive and determined she is. She will get through this!!!
Tracey

Prayers and Good Thoughts Needed!

I haven't spoken with Michelle today, but I did talk briefly with her mom and husband. Seems Michelle may have caught that bug going around, and spent the night vomiting. This is serious for a few reasons: 1.her oral intake is very low, thus she is at high risk for quick dehydration, and 2. she has weak bulging blood vessels in her throat and on other organs, the pressure from vomiting could cause a rupture, and because her platelets are low she is at risk for losing a lot of blood. I pray she can make it to her appt today with her specialist and get some pain control, and that she will not have anymore nausea and vomiting.
Tracey

Pain

I caught Michelle in the middle of a massage from her mom tonight, trying to find some pain relief. Seems not much came out of her appts today, just another appt for tomorrow. But at least she's meeting with her liver specialist, he seems to get the final say these days. Hopefully they will come up with something for her pain management. At this point they don't want her to take any pain medication due to side effects and how hard it is on her body. Anyone who's had a 9 out of 10 rating on the pain charts knows that it would not be easy to endure this day in and out. Yet she still manages to have the odd laugh, and care about how others are doing. That's our Michelle : )
I have all my fingers and toes crossed that you find relief from your pain, that you can start to eat without being in agony, and that you get your brand new shiny liver soon.
Tracey

Much To Be Thankful For!

Things are going great for our committee! We're selling tickets for our March 21 pub night quite quickly, and it looks like we will have enough donations to do our silent auction that night too! Please check out our sponsors, I'm listing them on the right panel as I get them organized. How fantastic for companies to pull together to help someone they might not even know : ). And Thank You so much to all of you have have sent cheques, made deposits at the bank, and made paypal contributions. We hope to acknowledge each of you individually, as you are making such a difference for the family.
Michelle continues to persevere, I can hear improvement in her voice. She has an appointment with her GP tomorrow to sort out a few things, and a phone consultation with the transplant clinic in the morning to hopefully go over a new careplan to get her back in shape and ready for surgery. The pain is still such a big problem, as is the dizziness. Michelle describes feeling at times like she is out of her head. The last two days she has resorted to crawling up and down the stairs, because with her dizziness she can't manage much more. Her mom arrived tonight, and the increased strength in Michelle's voice is obvious! I'm so pleased.
The Ways are having little man's 2nd birthday party this coming sunday. How great is their Nanny that she is coming in on her day off to help out! The Nanny clearly loves little tater tot, she has turned out to be such a good match for this family.
Thanks again to everyone who has made donations, is doing foot work to help out our committee, is providing assistance at the Way household, and all the sweet messages of support and encouragement for Michelle and her family. You are invaluable!
Tracey

Encouragement

A rough first night back home at the Way household. Not much sleeping went on last night. Michelle is still not feeling well, and then her little guy started vomiting. Seems he may have that bug that's been going around out here. Praying little one gets well quickly, and that Michelle doesn't catch anything.
Prior to feeling unwell himself, her son was such a little murse(man-nurse) last evening. He helped his mama into her jammies, and was encouraging her to have a padialyte freezie! The nanny, bless her heart, was very sweet. She looked out for Michelle while Jarvie went for her prescriptions, and called me for Michelle when she needed me.
Michelle is having a hard time getting a hold of someone who can help her sort out what she should be doing for herself at home. Hospital docs gave her Rx, then the transplant surgeon told her something else . She just plain doesn't feel good, what's a girl to do? Hopefully she will get some stuff straightened out soon.
And I just learned that Michelle's mom is headed out from California! That's fantastic! I look forward to seeing you J : )
Not sure how much traffic is actually getting to this blog, as I can't figure out how to set up the counter. But if anyone is actually reading my inarticulate messages, can I make a suggestion? Michelle is getting a lot of calls and emails, and not feeling well enough right now to get back to everyone. I think she could really use some encouragement right now. It would be so great if she could get some letters or cards in the mail, I think this would really lift her spirits. And who doesn't like getting mail! You can mail them to the Way house directly if you have there address already(sorry, won't post that here!) or feel free to send it to our committee PO box and I will make sure she gets them:
Michelle Way
PO Box 30082
12051 No1Road
Richmond BC
V7E 0A6

Thanks!
Tracey

Homeward Bound!

Got the word this morning that Michelle will be discharged from the hospital today!
They are going to review pain management before she leaves. Other than pain, I think the other big hurdle will be trying to keep food in her tummy. I think some Miso soup is in order my dear!
I know Michelle will be so happy to be back in her own bed, and to spend more time with her son!!!
She wasn't expected to make to the transplant meeting today, but now that she's out she's going to try.
Thank you all for the ongoing support for the family!
Tracey

*original post was edited due to changes in events shortly after publishing.

tomorrow's another day

Michelle had another nice visit with her little one today. He is such a big boy; when he left the hospital this afternoon he told his mama it was time for her to have a nap! Michelle and Jarvie have done such a great job, their son is a real sweetheart! I like to brag about my god son ; )
Michelle is anticipating a meeting tomorrow with the doctors about what the next step should be; whether there is anything else they can do for her in hospital, or if she can head home and wait for her transplant there. Looks like she's active on the transplant list again, which is great news!
Poor Michelle has primarily had elderly gentlemen for roommates! Maybe I'm naive because I've worked my whole nursing career in pediatrics, but when did co-ed become so, ugh, acceptable? I am going to try and work my magic and find out what's up with the room situation(most likely no beds). On a sad note, one of her room mates passed away last night. Rest in Peace Mr. Bed 4(I'm being sincere).
I'm praying that tomorrow will bring good things for Michelle, please do the same!
Tracey

llama llama red pajama...

Hello Everyone, thought I'd pop in and let you know the latest. Michelle had a nice visit with her little guy yesterday. She had a hard time when he left, but the visit gave her some sweet memories until she gets to see him next.
The docs were actually contemplating sending her home yesterday! But once they considered that she has been unable to eat, and that her pain is still not adequately controlled, they decided to keep her a little longer. We hope that she will be able to attend her transplant team meeting on Monday, and hopefully be bumped up on the transplant list.
Michelle had a rough night last night, and another difficult day of pain and vomiting today. An emergency CT scan was done to rule out appendicitis, but final verdict was that it looks okay; thank goodness! She is frustrated, feeling like she is not making progress.
Michelle is really missing her little guy tonight, longs to cuddle in and snuggle him to sleep. Little man is doing well, but misses his mama llama. I have tears for her now, as I think of how hard it must be to be apart.
Again I ask that you all send positive vibes to Michelle as she makes her way through this journey; that she will have a comfortable night, and that her son will have sweet dreams of his mama.
Tracey

The Nanny

In times past when there was a medical emergency, there was always this sense of panic "what about the baby?". Michelle and I discussed her situation tuesday morning, whether to consult the doctor or not about her worsening symptoms. I think she was 99% decided, but wanted my 1% assurance that she was not making more of nothing. When it was decided that she needed to head to the hospital, there was a calmness about it that I had never witnessed before. Her son was at play group with the Nanny. For the first time in a long time, Michelle could make a health decision without having to panic about who would care for her child. This solidified for me personally that getting a Nanny was a great solution for the Way's current situation.
Of course, a Nanny does not come free! Those of you involved in our facebook group "Supporting Michelle Way" know that there is an address that cheques can be mailed to. We are also planning some fundraisers that you can keep updated about on facebook. I will also try to include that information here for non-facebookers.

A special address and account have been set up in trust for the family:
*Please write your cheques out to: Michelle Way In Trust

*Cheques can be mailed to:
Michelle Way In Trust
PO Box 30082
12051 No1 Road
Richmond, BC
V7E 0A6

Alternatively, you can go into any Coast Capital Savings Credit Union and make a deposit into the Michelle Way In Trust account.

Please note that I have also set up a Paypal account(located right) for those who want to donate but not mail a cheque. This is my first ever Paypal account, so please bare with me as I fumble through the process.

Those who have already made donations or commitments to come to our first Pub Night at Legend's on March 21st, we thank you so much. The Ways feel so blessed to have such generous and caring friends!
Thanks!
Tracey

Latest Update

Michelle developed an infection in her kidneys earlier this week that was not responding to treatment at home. She was admitted to hospital for IV antibiotics on tuesday, for a proposed 3 day stay. Unfortunately things aren't going as planned, and her stay will be a little longer. Michelle is suffering with pain, headache, and vomiting. Her ascites(fluid in abdomen) has increased to the point that it is compressing her lungs and making breathing more difficult. Her platelets(component of blood needed for clotting) are critically low, resulting in her recieving a platelet transfusion this evening. At this point Michelle's transplant is on hold.
I can only imagine the fear Michelle and her family are feeling as they go through this experience. Michelle misses her son terribly, and hopes to have a visit with him tomorrow for the first time since her admission. Fingers crossed that this visit will go well for the whole family, and that her son will find comfort in his mommy and not have any fear about the hospital.
Please keep the family in your thoughts, and pray that Michelle will not have to endure any more pain, and that she will be home soon.
Thanks,
Tracey

Michelle's Story

Michelle was receiving a lot of emails from friends who were not aware of her current situation. In response, here is her story in her own words:

13 years ago I was diagnosed with Wilson's disease after being sick for 2 years. Wilson's disease is a genetic disorder whereby the body cannot process excess copper. It sits in the unmoving organs of the body and essentially "rusts" them away. It attacks either the brain or the liver primarily. By the time I was diagnosed 3/4 of my liver was scar tissue.

Just prior to being diagnosed, I was told I had months to live.. After diagnosis I was put on a drug on Penicillimine, the only drug available in Canada at the time. It caused a severe reaction within 2 weeks. After researching the drug and side-effects my mama bear sprang into action. She arranged for me to go to Michigan where they were researching a new drug for the treatment of Wilson's disease. I was patient number 28 or something like that. Luckily, the treatment worked and my life was spared.

After spending 2 months in the hospital (and only one break-away attempt!) I returned to life in Vancouver BC with renewed gratitude and an even bigger appetite for life. The disease, reaction to the medication and the 2 months of intensive chelation treatment left me without a short term memory, extremely tired and a host of other unpleasant symptoms. But, I was told that these symptoms would improve within 2 years and I could lead a normal life, both in quality and length. With treatment, Wilson's disease is not a death sentence

With great zest for life, I returned to work (got 2 promotions), went to school (earned my diploma), eventually found my husband, bought a house, had my baby, and then.... December 2007 arrived and I went to the hospital with pain. After some testing I was told that, inexplicably, the damage to my liver had continued despite good control copper levels with medication. My liver was failing and would require transplant. I was sure there was a better plan, a way to buy more time. My son was a little baby and I wasn’t ready to face any of this yet.
Before conceiving my son, I had asked 4 specialists and several medical practitioners for their opinion on having a child. I had unanimous agreement and support. They assured me that my disease was in good control, my life expectancy normal and the chances of passing this disease to my child negligible. It was with this reassurance that I made the decision to bring a baby into this world. Now my WORST nightmare was suddenly happening.

In February 2008 I went to the Mayo clinic with my husband, my mother and my son. It was a million degrees below zero and you couldn't go outside or your face would literarily freeze right off your face. We spent 10 days walking the tunnels between the hotel and the clinic. We were looking for answers, alternatives, basically anything but what we were being told. They confirmed what we had already been told and we returned home.

We were referred to the transplant clinic here at home for assessment and were told that, despite there being very little tissue left in my liver and many end-stage liver symptoms, the liver still had not failed. This continues to be true. However, because of the amount of dead tissue, my liver is not processing the blood and it is "bouncing" back causing my spleen to be grossly enlarged and varices throughout my organs. In addition, the blood is not being filtered properly by the liver so toxic gases form in the blood that are sent up to my brain causing neurolgical havoc in my mind. Therefore, in November 2008 I was PLACED ON THE LIVER TRANSPLANT LIST!!!!! I am so lucky to have another chance at life. I am so grateful.

While I wait, my world has gotten gradually smaller and smaller as I lose abilities and gain new inabilities each day. I can't work, drive, care for my son alone, keep my thoughts in order long enough to problem solve, make decisions, cook a meal without almost burning the house down. I am told to be prepared to start hemorrhaging uncontrollably or go into a coma at any time. Throughout all of this, my husband has been by my side. He has been steadfast in his commitment to my health and life and to our lives together. I am so blessed to have found a man with such strength of heart. But he cannot continue to work while caring for me and our son and keeping the household going. Because of this my mom has spent the last 6 months away from her husband and all of her responsibilities at home to be with us and help care for our son and keep the household going. She has also had to continue working which has put a strain on her emotionally and physically. She is returning home now which makes me feel a sense of relief. I never want to lean to hard on the people I love.

In her place we have a nanny- a bright 24 year old Filipino woman who made an immediate connection to my son. It will never be the same as having my mom but I am happy to have found a good match for our family. We took my mom out for a good bye dinner tonight and brought the new nanny with us. She eats Sushi so... she fits right in!

I am so blessed to have so many bright and loving people in my life. I am so grateful to my son. I know that my body gave him life but he keeps me alive and awake and present and real every moment. He is a responsibility that transcends whatever physical weakness I may have. I am so grateful to him for his strength and his spirit. I pray that he be protected from unnecessary pain and that he continues to find the happiness that is always with him.

My next assessment with the transplant centre is February 23rd unless the pager goes off before then!!! I will keep you posted.

With love,
Michelle