TR BBQ ~X~ Opening Thoughts (and baby stuff)

[drfish]

Brief update. Things are going ok. Ellie is gaining weight fairly well, she's up to 5lbs 3oz. Still has a while to stay in the hospital though - we were planning on another two months but it might be longer now because they sound pretty sure they'll do a tracheotomy on her in the next couple days due to some ongoing breathing issues (her lungs are fine) and difficulty intubating her. Its not certain but this probably means that her surgical schedule is all going to run together and she'll have 3/4 surgeries done before she can come home (the 3rd being her heart) - that probably means our previous two month estimate turns into 3-4 at least.

But all is not bad, other than breathing there aren't any immediate issues - her digestion is good with the OJ tube they have in place and she's not big enough for her heart defect to cause problems yet and the effects of the syndrome aren't anything that prevent her from being a pretty normal baby for her age - there's not much they can do except grow anyway. So that's what we do for now, she grows and we wait.

Check the gallery I mentioned above on the previous page as I've been uploading new pictures fairly regularly, she sure is fun to hang out with.

[Dposcorp]

Go Ellie! We are still praying for her. Tell her to eat more, so that she can become like a certain un-named gerbil who broke a chair they sat in last year at the BBQ.

[Inkling]

Ellie's a doll, drfish. Keep enjoying this time with her; it passes so quickly. Glad to hear she's making progress and growing. Lots of prayers, patience, and modern medicine are probably in her future, but for now just cherish each day as she grows.

[paulWTAMU]

damn. Sorry I hadn't checked earlier (I tend to skip the bbq threads). Glad your baby girl is doing better and that momma's ok!

[drfish]

This is awesome! That exact thing was totally on my to do list in the next couple years - I've been talking about it with Stacy since we found out about Ellie's condition. All the 3D printing of prosthetics that I found online were primarily cosmetic and I was shocked by that fact. Of course we also have this amazing place available to us as well - but the DIY route is still something I want to pursue. I am stoked that someone has started on this as an open source piece of hardware. Stoked!

Edit: Ar's take.

Also, Ellie had her tracheotomy performed today - everything went well.

[Captain Ned]

I can see it now. TR BBQ X will devolve into a debate over the proper tech specs for Ellie's protheses (bitch of a word to pluralize) and the swap meet will instead turn into a 3D printer competition.

I think you know that we'll gladly crowdsource anything you need. Faith manages.

[idchafee]

I can see it now. TR BBQ X will devolve into a debate over the proper tech specs for Ellie's protheses

It needs to be able to crush a car. If you are going to do a thing, you should do it well.

As we get closer to BBQ time, start throwing out stuff you normally do to get ready. I'm close enough that I can come up in the week(s) leading up to the BBQ and help get ready.

[Dposcorp]

I can see it now. TR BBQ X will devolve into a debate over the proper tech specs for Ellie's protheses

It needs to be able to crush a car. If you are going to do a thing, you should do it well.

As we get closer to BBQ time, start throwing out stuff you normally do to get ready. I'm close enough that I can come up in the week(s) leading up to the BBQ and help get ready.

That is a nice offer stiffie and I think drfish needs to think about farming out some of the stuff he usually does, this year at least, if we have someone who can help pick up the slack.
fish, don't feel like you have to be able to do so much this year; all we need is a good friends, good food and drink, and some corn-holin to make it a great time.
The rest of the little stuff you can let slide this year so you can have more time to have fun with your daughter.

[drfish]

One of the things on my to do list is to make a list of things for you guys to add to your list. What do you guys think of the title "Czar" - overdone? I'm thinking we need a Fireworks Czar, Food Czar, Trophy Czar, Tourney Czar, Swap Czar, Clean Up Czar, etc... We could replace Czar with "Supreme Gerbil of 'blank'" if you prefer... Thing is the work is already spread out so much and people already have their niches pretty well figured out so it doesn't feel like so much work... Of the examples I listed only one of them is something I do 100% and the most difficult thing about it is choosing the meme to go on the placard.

BTW, Ellie did end up getting her first "hardware upgrade" on Friday and she's sporting a fancy new trache and doing well.

[idchafee]

I would think that renting and transporting that RIDICULOUS grill/thermonuclear weapon thing would be at least somewhat time consuming?

[drfish]

Last time I didn't even talk to the guy, sent him a txt with the date, it magically appeared Friday night, disappeared Monday morning and then I used bill-pay to send him a check - less than a minute of total effort.

[eitje]

I'd like to have some BBQ flown in from Texas. What do you think?

[ClickClick5]

I'd like to have some BBQ flown in from Texas. What do you think?

I second that...being originally from Texas.

[Xylker]

I'd like to have some BBQ flown in from Texas. What do you think?

Oh?

What kind of BBQ from Texas?

Brisket? - Franklin BBQ in Austin (apparently the best in the state)

Pork Chops - Coopers Pit BBQ in Llano (apparently the best in the state)

Somebody who might actually do mail order? The Salt Lick originally from Driftwood, now with more locations.

[leor]

I'm in this year.

Ian, I'll be staying at your place, we'll be sleeping head to toe.

[just brew it!]

I'm in this year.

Ian, I'll be staying at your place, we'll be sleeping head to toe.

I hope to make it again this year.

Certainly willing to bring a tent or crash in the back of my van (this was actually the plan last year, but a bunk opened up making it unnecessary).

[drfish]

I'm going to mosey over to the official thread to post a BBQ update but I wanted to mention here that Ellie is doing really well and the "h word" (home) is starting to get talked about more and more - seems we are really approaching the one month mark now, and Stacy and I are getting all trained up on cleaning/replacing trachs as well as feeding her though her food tube and many other things. Looks like we're going to end up with 8 hours a day of home nursing for her as well so we're just starting to interview the companies in the area that do that so we can pick a good one. That'll be interesting but at least it means we'll be able to sleep! There's just so much to do getting ready to bring her home - it's like some kind of time warp because back in November all the planning to be ready for her in January kind of stopped and now it's all starting up again, with even more to do than before! BTW, there are a ton of new pictures in the gallery if you haven't checked for awhile.

[eitje]

I'd like to have some BBQ flown in from Texas. What do you think?

Oh?

What kind of BBQ from Texas?

Somebody who might actually do mail order? The Salt Lick originally from Driftwood, now with more locations.

Snow's does mail order.
I deleted all of your nonsense about other places being better than snow's.

The salt lick, by the way, is atrocious.

[zgirl]

I'd like to have some BBQ flown in from Texas. What do you think?

Wait a second what is wrong with what we have?

*goes and pouts*

Lol if you tell me what you are bringing I can cut back a little on everything else as we always seem to have a ton of food.

[drfish]

Quick update on things with us...

We thought Ellie was coming home last Thursday and when that didn't happen we were still hoping for Friday. Friday was a bit of a rollercoaster of maybe, no, yes, maybe, maybe, no – we were at the hospital for 13 hours, a new record. The issues all came from her MRI on Wednesday night which showed a growth behind her left eye, possibly retinoblastoma – but as far as cancer goes it's 95-98% likely that a child with it will survive into adulthood so at least that’s something. Of course we still don't know if that’s what it is yet since most of the pediatric eye doctors are on vacation – but they did send some pictures to one that had wifi in the Caribbean (on his iPhone with its retina display - still have a sense of humor) and he came back saying it looked like the retina was detached but he couldn't tell why (there is a lot of blood in her left eye as well).

So… If she gets looked at tomorrow and they need to do surgery she'll be shipped off to Beaumont in Detroit for a week or two to take care of that. Or maybe she'll stay in GR and start chemo (again, it might not be cancer, we don't know for sure, but we do know the growth wasn't there in December). Or maybe she'll come home for a few days and we'll take her back to GR on Friday for the last vacationing ophthalmologist to check her out and then find out she needs whatever treatment he deems necessary (or not and she can come home again). We just have no idea (just like with a lot of other things).

There is good news though, her heart seems to have repaired itself a bit so the surgery necessary there won't be as complicated and won't have to happen as soon as we thought, it could be over a year down the road. Also her tethered cord was found not to be tethered after all so that’s one surgery completely off the table.

Also, on a TR specific note I'll be sharing pictures of how her room at home is set up and all the fancy hardware she has waiting for her. It brings new meaning to the term "cable managment" let me tell you...

[idchafee]

Keep us informed. Its good that she has two solid indviduals as parents.

[Dposcorp]

..............shipped off to Beaumont in Detroit for a week or two to take care of that.

You have friends in the Detroit area, so if that happens, PM me. My sister is a nurse, and does shifts at both of the Beaumont hospitals in the area.

[drfish]

Thanks. If we end up over there I'll be sure to let you know. We found out last night that she'll be in GR until at least Friday though (the doctor that was going to see her today came in late to see her early).

[drfish]

She's home! Also her eye problem wasn't retinoblastoma, so no cancer! She will probably have surgery next week to fix it, just a simple laser thing. Still doesn't mean she will be able to see but it will stop some problematic bleeding.

I've adjusted the gallery linked previously with separate albums for her hospital stay (126 days!) and pictures taken at home. Check it out.

[Captain Ned]

Good news!!

Seriously. Let us know what loads must be borne and we will bear the loads.

[thegleek]

crazy times! i've missed so much! congrats to you, i am looking through your 100s of photos now as i type this...

[Cuhulin]

You, your wife and your child are in my prayers!

With modern tech, so much can be done now with infant heart repair and bionic prosthetics that there is a good basis for hope.

I have a stepson who was born 7 weeks early, was very small, and turned out healthy - so much so that he became a defensive tackle on his HS football team - it's amazing what pediatric medicine can do these days.

So I pray and hope for you!

[mthguy]

Hey congratulations, Devos is a great hospital, my son had open heart surgery to fix a pair of holes last year and Dr Hilman was the Surgeon, absolutely top notch. Glad to hear she is doing well, and that the 920 is capturing these moments so well for you. can't wait for the BBQ and to meet your bundle.

[drfish]

Thanks guys, things are going really well! I just uploaded some more pictures this morning. Honestly the biggest ongoing problem is cooling her room with all her equipment kicking out so much heat. I don't really want to install a window AC (in addition to central air) but all the fans and everything else I've rigged up just can't handle it - and it's only been 70 or so outside so far. There's no question I'll break the 2,000 kWh/month barrier before summer, might have even done so already last month - I don't even want to know what happens when it's 90+ outside... Also, the credit the electrical company gives us for "life support" is a pathetic $3.80/month. I suppose it's nice of them to do anything at all, but that doesn't even cover one day, lol... It's worse than when I was doing hardcore F@H! I'm debating an exhaust fan in the ceiling to vent into the attic...

...but like I said earlier, if stuff like that is my biggest immediate concern, things are going darn well.

[idchafee]

It's worse than when I was doing hardcore F@H!

I find this very hard to believe