So glad I found you guys!

[mariaf]

She said each patient has their own private room with bathroom and TV and it has a bed for one parent so I'm going to stay right in my son's room! There are also guest rooms on the 7th. floor that two parents can stay in or two same-sex people can share but I'd much rather stay right there with my son.

Sounds very similar to the Philadelphia Shriners - maybe even a bit more private. My son was in a semi-private room (two patients) and I was given a fairly comfortable cot right next to David's bed. Most of the time that we were there the other bed was unoccupied so we were very comfy. They also had those parent guest rooms you describe on another floor - and they did tell me I might have to share with another same-sex parent, but again I think we lucked out that the hospital was not filled to capacity the week of David's surgery, so the one night when he was in ICU and I did utilize the parent guest room, I had it all to myself.

I'm glad things are falling into place for you and your son. He will be in excellent hands.

[Elisa]

If we were allowed tickers here I'd use this (attached) one. Seems appropriate, heh.

Managed to call the two Shriners gentlemen yesterday: the driver and the fellow who first came over to visit me a couple of months ago when I was so desperate. They sure did appreciate the updates as often people don't get back to them so they're left wondering.

Working on a blog called "Elias' Scoliosis Journey" and I'm sure having a hard time getting past the first few steps. I'm using 'Tumblr' so if anyone has any help ideas I'd sure appreciate them.

[Elisa]

Just got off the phone with Shriners (BC office) to let them know about the timetable so they can get our itinerary ready. She just happened to have my son's papers in front of them and said they were just talking about us. Someone is going to be talking to the health minister about how long we've been waiting (16 months) to get a FIRST appointment with BC Children's Hospital b/c that's absolutely outrageous and his spine has progressed to 110* and they have done absolutely nothing about it. My kids were all born in BC!!!

I am so not finished with this BS but am using my energy at the moment to keep my son healthy, work and plan our trip to Portland and of course deal with his two surgeries, traction and recovery. And then I will direct my attention/wrath towards possibly suing the bastards. Can I say that word here?

[Pooka1]

And then I will direct my attention/wrath towards possibly suing the bastards. Can I say that word here?

I think you can if it fits. In this case you are holding back though.

I would say this is well into moral turpitude territory as I doubt there were that many cases more pressing so as to keep your son waiting for 16 months. Anger, exasperation, sadness, etc. whatever you like are appropriate.

They can fix this.

[Elisa]

I have been ranting a lot about our situation at home and at work and elsewhere and my son told me when we down in Portland and in the hotel room that 'I need to let go of the anger and move on' but it is so hard to do. I haven't been as vocal about it lately (only online) b/c I don't want to upset my son or worry him in any way so I've stopped ranting in front of him. We're focusing on getting him healthy as he's got a bad cold right now and well fed and his ugly haircut is going today if he feels up to heading out and about for a bit today.

This first surgery he'll be having to "loosen up his spine" before traction, is this going to be quite big deal and if so, how long do you think it will take him to recover enough to feel comfortable enough to read books and play around on his laptop etc.?

Also, I'm working on a blog so I can keep family and friends (you guys too if you like) up to date on what's going on. I am not good at setting up stuff like this. If you notice in my signature, there's an address for the blog but I can't seem to be able to change from an address to: Elias' Scoliosis Blog and I've tried the linky thingy. Anyone know how to do that? Thanks.

[Elisa]

Got my linky working, thanks pooka! For those who'd like to follow and post along with me, be my guest, or just follow, that's cool too.

Contacted Elias' school councilor this afternoon to fill him in on all the details about how he'd be away and why etc. His first question was: "Why isn't he having the surgery here in BC!!?" When I told him our story he wasn't overly surprised and he was most concerned about math like it was different down there. I'm sure he put two and two together b/c our BC Government has also slashed teachers' funding too. My BIL is a teacher and he absolutely HATES our current Gordon Campbell leader. Honestly, I am not involved with politics but obviously have been forced to deal with the aftermath of certain decisions.

Elias can't wait to head down to Portland and says those weights attached to his head sound really good b/c he is been quite uncomfortable lately, especially trying to sleep. He's good while sitting in his computer chair but not so comfy when he lies flat on his back. I'm assuming that has a lot to do with his large right rib hump.

[Elisa]

Just got off the phone with my sister who lives about 2.5 hrs south and she said that she and her husband are planning to come down to Portland to be with me for a few days when Elias has his first surgery on March 22nd. That would be awesome! She is dealing with her own cancer at the moment so everything depends on her health and how she feels at that time.

She asked about the hotel that we stayed at last month but it's quite a distance from the hospital and I know that she wouldn't really like it anyway b/c it's basically a truck stop: clean enough, has a good little area below where they have a store, restaurant, laundry facilities, cinema etc. but is very plain. Can anyone recommend a hotel/motel closer to Shriners that is nice but not too expensive?

[hdugger]

I'm just kind of googling around the area. It looks like there are a few nice-but-not-too-nice places nearby.

There's a Marriot's Residence Inn down near the river - (at Riverplace). Riverplace is a little disconnected from downtown - you have to drive to get there - but otherwise nice enough.

There's also Avalon Hotel and Spa near the bottom of the tram (and also on the river)

And there are lots and lots of places downtown

[Elisa]

I am definitely going to c&p your info HD. It's always great to be going someplace and finding people who know their way around. All those hospitals on the hill were so confusing but most people seemed to know where they were going and always seemed to recognize a 'lost' face and stopped and helped.

I want to go on that free-train around town.

[mariaf]

I would also check with Shriners - each of the hospitals has a list of nearby hotels that offer discount rates to patients and their families. You probably need to ask for the person in Transporation/Social Services.

I know this is for your sister but she is part of your support system so they might extend the rate to her. She would probably need to provide the patient's name, date(s) of hospital stay, etc.

Worth a shot perhaps.

[Elisa]

Good idea Maria, I'll look into that as well, thanks. I told my sister that I think it's great that she and her husband come down to be with us for Elias' first surgery but I also told her that if she wasn't up to it that I'd understand and that I would be fine there by myself. The hard part was just getting to this point!

I did have a small anxiety moment at work today though. I was eating my sandwich that I brought for lunch and I got about half way through it when all of a sudden I felt sick to my stomach (no it wasn't the food) and a bit sweaty and lightheaded and scared thinking about the whole ordeal in front of me. I threw the rest of my sandwich in the garbage, made some green tea and went back to work. I hate that feeling of anxiety but at least it was manageable and didn't last long. I'm definitely going to have to take extra Ativan while I'm down there, especially when my son is actually in surgery.

[Elisa]

Just talked to my sister a few minutes ago and she got the latest results back from her blood work and it was GOOD! Looks like she will be heading down to Portland on March 21st. and will stay for a couple of days with me through Elias' first surgery and see the lil angel with his halo on. =D

[mariaf]

I am so glad your sister's results came back good!!

I have a cousin (who I am quite close with) and a friend who are both battling cancer at the moment. It is an awful disease and these folks are so brave and strong - true heroes in my eyes.

[mariaf]

I did have a small anxiety moment at work today though. I was eating my sandwich that I brought for lunch and I got about half way through it when all of a sudden I felt sick to my stomach (no it wasn't the food) and a bit sweaty and lightheaded and scared thinking about the whole ordeal in front of me. I threw the rest of my sandwich in the garbage, made some green tea and went back to work. I hate that feeling of anxiety but at least it was manageable and didn't last long. I'm definitely going to have to take extra Ativan while I'm down there, especially when my son is actually in surgery.

I recall moments like that as well in the days and weeks leading up to David's surgery. I even specifically recall tossing my lunch in the trash at work one day.

Oddly enough, I also recall that once we checked into Shriners, the day before his surgery, a calm came over me and I was much less anxious.

I guess it's all part of the process. You have done amazingly well and been very strong for your son up to this point. I have no doubt that you will continue to do so, despite these little bumps in the road :-)

[leahdragonfly]

Portland hotels

Hi Elisa,

My husband stayed for 7 days at the Avalon Hotel when I was having my surgery at OHSU in October. It is a very very nice hotel, and they have a OHSU rate of $100/night, which I though was quite good. We stayed there the night before my surgery and it was very pleasant and quiet. The only drawback was they have no free parking--parking was $19/night. However, the valet broke my husband's sunglasses and when we complained to the mgmt they did not charge us for any of the parking.

There is also a place just a few blocks up the hill from OHSU (which is across the street from Shriners) that has very reasonable rates. I can find out the name, but I am certain Shriners has a list of places that offer a discount.

Sorry you had an anxious moment today. It is certainly very understandable. This time leading up to surgery is the very worst.

Take care,

Gayle