They took Jax back about a half hour ago. I will post some pics of him going back when my hubby comes with my computer.
Is it bad when the anesethisiologist wants to know what his CODE status is? Meaning what are our wishes if something were to happen. I told him right now he is full code. But if that time comes we will make the final decision then. What a question to ask.
Since the trach has come up I get the feeling once again that people don't think Jax needs one more thing. I agree the poor kid needs a break, but does he not have a quality of life? I think he does. Yeah his smiles are very small and you have to look hard to catch one. And he doesn't do much eye contact because his vision is very limited. But you've seen him babble. He is a baby, he deserves everything. Its not like he just sits there and stares into nothing. He does interact. And although the trach terrifies me, and I still have a lot of questions to ask about it, its not that big of a surgery, and its not like he will be in pain with it, he will just breath through his neck instead of his mouth.
Ok, there's my rant, I'll update as soon as they update me.
Our prayers are with Jax and your family all day.... we love you guys!
ReplyDeleteThanks for updating! I'm PRAYING!!! And, I understand your feelings on quality of life. Sometimes I think that people don't look at Gavin as being as "worth it" as others are. This gets me so mad! Of course Jax has quality of life and a purpose! He probably feels more love than most children do! Keep fighting for him Lacey! He's definitely worth it! HUGS!!!
ReplyDeleteLacey, We are following closely and praying hard. We haven't met Jax or your family yet, but we feel a closeness just from your reading your blog. Jax is truly an angel and your family is very special. We hope everything goes well today.
ReplyDeletePraying, praying, praying!!!
ReplyDeleteI have held Jax,I have looked in his eyes and I have seen the love showered and shown upon him by his very adoring family.That is all that matters Lacey.I absolutely HATE the "quality of life "thing.Drives me crazy.Who is anyone to judge quality of life and yeah,one doesn't have to hear those words from peoples lips to know what they are thinking.I have,unfortunately, been on that side of it as well.Forget about what anyone thinks or speaks Lacey ...You,Ray,Mondo,Tanner,Carter and God are all that matters.Thinking and praying for you.Will call later.
ReplyDeleteI hate when doctors bring up that whole "quality of life" nonsense. If I had listened to the doctors when Taylor was 2 weeks old, she wouldn't be here now.
ReplyDeleteYou will know what to do when the time is right. You'll feel it in your heart.
Hang in there and my thoughts are with you today.
You know your baby best Lacey. You'll make your decisions for him based on what you know about Jax. Whatever you decide will be the right thing for your family. Lots of love.
ReplyDeleteI agree he does have quality of life. He has an adoring family and he does interact. Praying, praying, praying.
ReplyDeleteI agree with you 100%, Jax deserves EVERYTHING! Praying for him & You!!
ReplyDeleteHUGS!
Never let anyone cause you to forget one simple fact in life..
ReplyDeleteThat you know your child better than anyone else ever could.
If you honestly believe that something is in Jax best interest, don't be afraid to remind the "powers that be" that they work for you!