I will admit that I'm a Friends fanatic....ok, it may be more than a fanatic. It may be an obsession! I turn on my Friends DVD's every day. I've been told before that I have Friends tourettes syndrome. I often blurt out punch lines when it fits the situation! I like to watch them while I'm going to sleep, and they definitely are my pick me up!So today after having long conversations of which I'm not going to go into too much detail. Don't want to bore you with more medical crap. But basically I was told the care conference wasn't to be a bitch fest, that they already know that I don't like the cardiology team.
Bawled my eyes out, thought these people knew what kind of person I am, that I'm not a monster. But kind of feeling like all my doctors are not understanding that yeah, a lot of stuff may not be worth putting Jaxson through. That I do think quality before quantity. But I want to know all my options, then we will decide as Jax parents whats best for him. Don't knock me down before I have all of my options.
Luckily the palliative care team saved the day, again!
They want to meet with us before we meet with the docs. We will get everything out on the table, and have a plan in place. I love that they can be my voice, not that I don't want to talk, or don't want to be there. But moms tend to be blubbering messes when you are talking life and death about their child. So they can help me get my words out!
So I've gone and turned on my trusty Friends. Season 7, disc two. I'll have it playing in the background while I'm folding clothes and taking care of my munchkins.They always keep me laughing....
I feel better already!
My heart goes out to you. Hugs
ReplyDeleteSo glad you've got a team in place to help you through this *finally* and so glad you've got a source of comic relief when you need it. We all need some random escapism from time to time. Friends was a great show! :-)
ReplyDeleteI am totally addicted to Friends too! I own every season and they are my pick me up as well!!! Hope your day gets much much better~~~"I'll be there for you" :)
ReplyDeleteI am so sorry to hear about this. I wish there was something I could say or do that would make a difference. We pray and think about little Jaxon everyday and I hope that those doctors can try to understand what it is like to be in your situation. I feel like sometimes they are too busy being a "doctor" they forget to be human with feelings and compassion.
ReplyDeleteNo parent is suppose to be in your situation.
I do know when we went to get a second opinion in NYC (we live in STL) we sent all of Hunters records first to see if it was worth our while to come. I think the doc charged 25 dollars for the consultatation. We spoke via phone and e-mail before we made our visit. I know in our situation we feel better talking with different doctors and getting different views so that we feel we have done EVERYTHING possible for Hunter. This way I know we have no regrets on his treatment. I don't know how you would feel if you did not go to CHOP now that you know all you know about them. If they tell you there is nothing to do I don't know it would be any easier to accept but at least you feel you are doing all things possible for your little fighter.
All of that is just my thoughts. You will know in your heart as Jaxon's mother what is best for him and what you need to do to advocate for him.
Sending you thoughts, prayers, and strength from St Louis.
Thankful for the palliative care team, will be praying for your meeting, do you know when yet?
ReplyDeleteLots and lots of hugs to you and your little guy!! Everyone needs laughter every day and Friends is a great place to get it. I personally love the old I Love Lucy shows - doesn't matter where it comes from just as long as you get it!! I forgot to sign my name last time - oops! - Maureen C
ReplyDeleteSo sorry you are having to go through all of this. Jaxson is so lucky to have you as his Mother. Glad you have a team in place to help you through all of this. Okay, Friends is my all time favorite show. My girlfriends and I used to watch them all. I still watch them as well and my kids are like...what is this? I say it's the best show EVER!!!! Glad you have it to make you laugh.
ReplyDeleteAnd we, your real in the flesh friends,will be here to get you through these rough spots as well!Wish I were there to give you a hug,let you have a little Zoey fix and pull up a chair and laugh right along with you.Since it's not an option,please feel our love from afar.
ReplyDeleteGlad you're feeling better today. Wanted to send you an email but my computer died and I lost all my email addresses, didn't think to look on your blog. Plus anything I had to say yesterday would have been bleeped. i just can't believe what you're up against right now
ReplyDeletebtw, I love, love , love friends too. i always wanted to be Rachel but I am such a Monica! LOL
Love friends too! Good luck with your conference - doesn't sound fun at all ;(
ReplyDeleteoh, I'm so sorry that everything is all yucky right now....hopefully you get up to CHOP soon...and how dare they tell you that about not bitching.
ReplyDeleteand Friends? my favorite show. I too blurt out lines all the time that no one remembers anymore...and I cried when the show ended...
and really? like Joey was supposed to be a good substitute? I saw that ship sinking when they announced it
Wow, what a toughy. You are doing all you can do right now. Jaxon is blessed to have such a fighter for a mommy. You're in my prayers, Lacey.
ReplyDeletei never know what to say when things are rough...i'm sorry? you'll get through this? i'm thinking of you? they just don't seem like enough. i wish i could help. i wish i had answers for you. mostly i wish jax would just get better so you wouldn't have to make these horrible decisions. :(
ReplyDeleteFriend's quotes.....you sound like my sister! She is a walking Friend's show...actually, she is a walking movie quote as well! :)
ReplyDeleteGlad you have something to lighten your mood. My go to, to lighten my mood is HGTV or Food Network. They aren't funny, but they calm me down and help to put me in a peaceful mindset.
Glad the pallative team is there to help you! Praying it goes well! Keep laughing friend....wish I could be there to support you through all of this! Being a Momma, and making these tough choices is draining! But, you are one Momma that CAN do this, I have no doubt! Hugs and Prayers!!!
Hugs Lacey! We are Friends lovers here too! Last year a teenaged boy from Chile stayed with us a few days and at night when we went to bed he'd watch my daughters Friends DVDs and we'd hear him laughing hysterically! Made us laugh just to listen to him! Hang in there!
ReplyDelete((Hugs))
ReplyDeleteI am sorry your care conference didn't turn out well. I've had days where I felt like her ped wasnt understanding me. You are a wonderful advocate for your son.
I am sorry about the conference! Friends is always a good fix though!
ReplyDeleteI feel awful. You are going through Hell right now and I am whinning about last years memories. I wish I knew the right thing to say or give you a hug. Know that I am praying and asking God to do what I can not.
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To answer your question on my blog:
ReplyDeleteLacey I was never told he had TMD. He had AML - leukemia m-7 with no TMD assocation.
Praying that today you can find the strength to deal with the heavy heart you are experencing.
Sorry for only being able to give you just words. I look forward to seeing the pics of Jax and Arina - they crack me up. I see in his face how much joy she gives to him.
I am glad some part of the team understands that they are talking about a child, I think sometimes Dr.'s see a diagnosis and medical problems that need to be solved instead of seeing the beautiful child that belongs to a wonderful mother who is just trying to do the very best thing she can for her son. We are all thinking of you!
ReplyDeleteSo sorry to hear about everything you are going through, we are all here I know it's not going to change much but you can talk and vent as much as you like. This must be the hardest thing for a parent to have to go through and you are so very strong and brave my friend. But you are allowed to feel the way you are and we will support you no matter what.
ReplyDeleteI love friends too, I don't know how many times I've watched the reruns. Its one of those shows they have been repeating for years and I keep watching and keep laughing, never get bored with them.
I love Friends too, but I haven't watched it in quite a while.
ReplyDeleteI'm sorry you are having to deal with all of this, but Jax is very lucky to have you on HIS team!
I'm so sorry. Jason got an earful this week about doctors/nurses/ the system and how no one cares. Which is probably false, but it felt true at the time. I'm sorry
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