So...I've been putting off writing this blogpost, because that would mean we're getting down to crunch time, that would mean this surgery is really happening in 17 days (but you know, who's counting?). But, I'm realizing we're getting close and people are wanting to help, so I wanted to let you know how you can best help us.
Pray, pray, pray.
Seriously. This is the #1 thing you can do for us. If you haven't talked to God in a while (or heck, ever), this is a GREAT time to start. And if you've been praying your whole life, why not take it up a step and pray with a group, add Bodie to a prayer list (or 2 or 10???), or fast so that you can focus on praying for Bodie?
Specific things we'll need prayer for include:
(1) Bodie to remain healthy until the Fontan.
(2) Bodie's EAT to get a little more under control so that it doesn't present any problems with the Fontan (he has been in EAT pretty much all day every day since we left for Tahoe - since his rates are low, no one is particularly worried or thinks it presents much of a risk from a surgical perspective, but as his mother, it makes me nervous - it would be super if it would go away on its own).
(4) No unforeseen scheduling situations arise causing us to be bumped (one of our heart friends was on deck for his Fontan next week and just got rescheduled for late August due to critical babies needing the ICU space, so it can definitely happen).
(5) That Bodie will have no major complications.
(6) That Bodie will come back extubated and we'll be able to manage his post-op pain effectively.
(7) That his body will adjust to the new circulation quickly, so that our hospital stay isn't too long.
(8) That being in the hospital for an extended amount of time won't crush Bodie's silly and wonderful spirit. From what we've seen with our many other friends who've Fontanned lately, it's VERY common for kids to become withdrawn during the Fontan stay and pretty much "check out" emotionally. It breaks my heart to think of that happening to Bodie, but I know it's very likely. Please pray that he bounces back and we start seeing his smiles and silly personality return quickly.
(9) For peace for Sierra, who is too young to really understand how critical this surgery is, and loves her brother SO SO much.
(10) For peace, patience and strength for Dusk and I, as we sit bedside and try to support Bodie as best as we can.
So yes, LOTS to pray for. We Covet prayer right now.
Bodie will likely need blood product during or after surgery. We would love for that to come from directed donors (people we know personally). Because Bodie is A+, he is compatible with the four most common blood types (A+, A-, O+, O-). YOU CAN DONATE BLOOD IF YOU ARE EITHER A OR O.
Platelets will also be an important part of Bodie's surgery. Platelets will help control the loss of blood which will ensure the surgery will go smoothly. The difference between giving blood and giving blood along with platelets is time. The whole process should take 1-2 hours. ANY BLOOD TYPE CAN DONATE PLATELETS.
Blood donations must be done at CHLA on July 24th, 25th or 26th. Donors must weigh more than 110lbs, not have left the country in the past year and not have gotten any tattoos or body piercings in the past year. Some medications could disqualify a donor as well. Donors can not take pain relievers 48 hours before giving blood. No antibiotics 72 hours before giving blood. For platelets it is important to avoid any kind of aspirin.
To donate blood at CHLA (or to find out whether you are an eligible donor), call the blood center at 323-361-2370, and let them know you'd like to donate for Bodie's surgery on July 29th.
Even if you don't live locally (or can't make it to CHLA on the days specified, PLEASE give at your local Red Cross or Children's Hospital - there is always a shortage of blood and donors are desperately needed).
Help us fill Bodie's Treasure Box
We will be creating a "Treasure Box" for Bodie with all sorts of little goodies for him to open whenever he has any sort of procedure (blood draw, gross meds, chest tube removal, dressing changes, etc. - all the non-fun stuff). We'd love to have some of Bodie's fans help us fill this box! I'm hoping to fill it with lots of Bodie's favorite things - small Veggie Tales items, matchbox cars, little puzzles, tiny balls, little trains, small paint sets, coloring books, etc. I'm also looking for anything that will make Bodie work on inflating his lungs (Fontan recovery is all about the body managing fluid and new circulation - so we'd appreciate anything good for getting those lungs moving to get that yucky fluid moving around and out of his body post-Fontan) - whistles, bubbles, musical instruments, etc. He also LOVES singing cards, so any kind of singing card would be AWESOME (and yes, I know they all seem to be Happy Birthday cards - that's totally cool, he won't know the difference)!
For those of you who know Sierra, we'd love to include a few things for her as well, so that she doesn't get lost in the shuffle of Bodie having such critical surgery. Her favorite things are anything Disney princess or Fancy Nancy (especially books, coloring books, stamps, crafty things, etc.) - even just a card would mean so much to her!
If you'd like to contribute to Bodie's treasure box (or Sierra's items) and do not have our address, you can email me here at the blog and I'll give you an address to send items to.
Bring us Meals
My best friend Val and Grandma Jan and Popo Alan will all be here the week of surgery to help us out and to help with Sierra, but after that, I can pretty much guarantee we'll have a meal sign-up. If you'd like to be included, please let me know and we'll make sure the email goes out to you! Life will be a little tough when Bodie comes home from the hospital, since he'll likely be fairly weak and needing extra attention, not to mention that we'll have to keep him away from large crowds for a couple of weeks - it won't be quite so easy for me to run out to go to the grocery store to get stuff for meals. And, if his admission ends up being prolonged, we'll need meals even more. So we'd LOVE the help, trust me! (And even if you don't cook, that's ok - we love takeout. ;-))
We've had a number of people ask me whether we'd like visitors in the hospital and the answer is absolutely YES. I don't plan on leaving Bodie's side (at least for the first week), so I'm sure I especially will welcome visitors - and, assuming Bodie is up for visitors (i.e. stable and not sedated), I'm sure visitors would do him wonders as well. So, if you'd like to visit us while we're inpatient and you haven't already told me, please make sure to let me know and I'll let you know when we're ready for visitors!
So, there you have it - PRAY, give blood, send goodies, buy us food and visit us! Or, you know, just PRAY. Either way, we'll be super grateful!
I can't see how to write you an email. I'd love to send a few goodiesReplyDelete
You can contact me at firstname.lastname@example.org :-)Delete
I would like to sign up to take a meal to you and dusk while your at the hospital. Also id like to take Bodie a little gift when he is able to get visitors at the hospital. What size does he wear ( shirt )
Jen Ochoa( mother to Marc , HRHS) we met at CHLA on 3/25/13 when my son had his Glenn
My email address is Marcspecialheart@yahoo.comDelete
I'm a horrible cook, but I'm excellent at take out :-) So send me your info so I can arrange to pay for a meal via the telephone. I'm in Alaska so it would be a little tough for me to deliver. Also, send me your address pretty please so I can send some goodies. My email is email@example.com Praying for you all always!
This made me cry. Seriously. Bodie's surgery is the day before D's cath....how is it time for this?! I'm praying, praying, praying!! Big hugs, friend!!ReplyDelete
I need your address!