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Saturday, 5 November 2016

Frustrating News

So yesterday, I was picking our girls up from school when my cell phone rang. I could tell by the number that it was Lilybear's Ortho dept calling. I thought, oh, they must be calling to confirm Lilybear's surgery times for next week. So I answered the call. Turns out "something more urgent" came up and they have to postpone Lilybear's surgery until DECEMBER 13th! Over a month away! I was just gutted, right there in the lobby of my kids school. Surrounded by lots of smiling happy kids, and parents. I politely asked the nurse if she could call me back in one hour to discuss as I was picking the kids up from school, had no way of writing anything down etc (and I didn't want to dissolve right there in the lobby). She agreed to call me back. . . . but never did!

I can honestly say that this is the first time we have been so disappointed in the service from the IWK. On top of hearing this bad news, the way I was informed was very blunt, and uncaring. I just felt like she may as well have said that someone else was more important than my kid. There was no apology. There was no phone call back.

Don't get me wrong. I totally understand that a more urgent case came up. My issue is how it was handled, and how the information was delivered. We have been waiting for this surgery to come for months. . . and now we need to wait more. I don't know if they understand the amount of prep that goes into planning a trip from out of province for your child to have surgery. It left me wondering why they couldn't bump someone that lives closer to the hospital, that wouldn't have been impacted as much? Maybe that's selfish for me to think, but there it is. It is also frustrating for us as my  husband had to fight to get time off of work to go over with us, and now we are losing the income from those shifts, and he will also need to try and get time off during a period at his work where time off is rarely given (right before Christmas).

I've spent the evening last night thinking about how just when we thought Lilybear would be getting out of her double leg casts (just in time for Christmas), we will be just heading in to put them on. Thinking about how the weather will be during her casting time now it will be in the winter. Thinking about how she will spend her first Christmas break from school in double leg casts, and not able to play outside in the snow. I've had a good cry. Now we just need to focus on moving forward. I will try to focus on continuing to get my little girl ready for her surgery. I will focus on taking it one day at a time as we count down again. Here's hoping I don't get another phone call a few days before Dec 13th telling us we have to start over again. . .

Friday, 21 October 2016

It's been a while. . .

It's been quite some time since I posted an update on Lilybear. I just couldn't bring myself to do it until now. We'll have to rewind a few months and begin from there.

Back in August of this year we had our Annual followup with our Ortho dr. He is gracious enough to host a travelling clinic to PEI for his patients that live here, to save us the cost of travelling out of province with our children. It is a great blessing to us, but comes with some disadvantages. The biggest one being that he can get behind on appointments, due to very limited office time while he's here. So Lilybear's appointment was a few months late, and we spent those months waiting, and hoping for it to come. I always have this feeling in the pit of my stomach when we go into one of her follow ups. I have just told myself this is something that I will have to live with, as it doesn't seem to ever go away. I just hope, and pray leading up to her appointments that all will be well, and we can continue on our way with out further treatments. That merry little way came to a screeching halt in August. I knew something was up when he had her walk a bit more than he usually does at her appointments. Bless him, I could see it written all over his face. Then he had to say the words that he knew I was wishing I would never hear. "She's going to need surgery to prevent a relapse." So then I took a deep breath, and thought 'OK, I can handle that.' Then he explained that a tendon transfer surgery would be needed on BOTH feet. Her right foot was already beginning to turn in, and based on the tension in the left he predicts that it wouldn't be long before that foot would require it as well. So may as well do them both at once so she doesn't have to go through the whole process two separate times.

This whole appointment went by in what seemed like 20 seconds to me. My mind was racing. A nightmare come true. Lilybear definitely handled it better than me. She asked a lot of questions on the way home. I did the best I could to answer them. . . with out dissolving into tears. We were told 3-6 weeks. In reality it will be almost three months of waiting. This has given us a lot of time to prepare for the trip, and prepare Lilybear for life after surgery. I am grateful for this time with her, as it has given us the opportunity to think, plan, and prepare for what is to come. Though for the first few weeks, I feel like I may have walked around in a daze, the waiting in a way has been good for me too. I feel ready for it now. If it had of happened as quickly as the Dr. thought, we wouldn't feel as ready.

We have been able to order some Dry - Pro cast covers for her, so she can still take baths while in double leg casts. We have been in contact with PEI Red Cross to book a wheelchair for her to bring with us for after her surgery. We've been in contact with Ronald McDonald House about possibly staying there for a few days when she has her surgery.

I spoke with one of the nurses from the IWK  yesterday, and she walked me through where we need to go and when. I answered a million questions for them about Lilybear. We have a meeting with Child Life at 2pm the day before her surgery so that they can talk to Lilybear about what will happen the next day, and who she will see etc. They are going to show her the mask, and iv stuff, and talk her through everything that will happen before she goes to sleep and after she wakes up. I am blown away once again (like I am every time) with how different the staff at the IWK are from our local hospital (with the exception of the Peds unit). It takes a special kind of person to deal with kids that are sick/injured etc. She was so patient with me on the phone, and gave me a chance to ask all my questions, and write down all the answers to go over with my husband later. There were a few questions she didn't have the answers for, and instead of just blowing them off, she made a point of finding out the answers for me and calling me back to let me know.

So I am left with a feeling of relief to finally have answers. Waiting is the worst part of any medical issue with your child. It sucks... a lot! So now the count down is on. We leave in 18 days. Hopefully we'll just be at IWK for 2 days, unless there are any complications. Then we'll be in back home with Lilybear in double leg casts for at least 4-6 weeks. They will be walking casts, so once she is able to weight bare on them she can walk with them on. We'll have to get her some cast shoes to protect the casts for once she returns to school, and I am currently trying to come up with something for her to wear outside during this period that will protect her casts.

That's all I can think of to write for now. I will write more to update on how her pre-op, post op etc goes in November. Thanks for your time, and please pray for all to go smoothly for Lilybear next month, and for no complications to arise!