Friday, June 19, 2009

Maybe home tonight!

Sorry I didn't post yesterday, daddy took the computer home. Jax has done ok. He is actually up to full feeds and tolerating it so-so. His belly is still distended but it hasn't gotten bigger overnight. He has been super cranky and needless to say last night was a very long night. They pulled out his foley this morning, and surgery will pull out his line in the next hour. Then we have to wait and make sure he pee's and his line was so deep and hard to get that the surgeons have to pull it out and we have to make sure that it doesn't bleed.

I am meeting with the palliative care team at 1:30 today. We thought it might be a good idea to get together and makes some plans since some new stuff has come to light.

When we found how hard it was to get a line in him (even a central line) that brought some disturbing questions. What if he gets really sick and needs multiple lines? We would bee pretty screwed. And if they are able to fix his SVC, can they get access for that? They talked about risk verses benefit of fixing it. There can be some catastrophic risks. And do we really want him to die in the OR, or on echmo with so many wires that we can't even see his body. I would much rather him go in my arms or at home. So we just need to talk about what the future holds for my little man. We don't want to have to make serious decisions in the heat of the moment. Its better to have plans.

I'm not giving up by any means. I'm still praying Boston has a brilliant new way to fix this that is not so risky. I wish they would hurry up and let us know.

Hopefully we will be home tonight, keeps those fingers crossed!

16 comments:

Tiffany said...

That's great news that Jax might be able to come home tonight. I know how exhausting hospitals can be.
As for your decision making, you will be in my prayers. I remember the first time we sat down with palliative care I couldn't believe we were even talking about those kinds of options. So many things in our lives happen now that a few years ago I never would have guessed and yet God continues to give us strength to make it through each day and to make the best decisions for our little ones. If anyone is going to make the right decision for your little guy it's you.

Junior said...

So happy that Jax may be coming home tonight.
We will be praying hard as you have your meeting, such hard decisions. You are an awesome mom and will do what is best for your little man.
Big hugs

Denise said...

Oh, I really hope he can come home tonight....if he is ready.

Conrad, Megan and Our Precious Keaton said...

Hello dear Lacey and Jax, so happy that Jax might be coming home today - thats wonderful! I will continue praying for guidance and wisdom and for the doctors in Boston to get back to you with great super news! I can only imagine how tierd you must be, hang in there! God bless, Megan and Keaton

Michelle said...

Hey there- Hope Jax does really well this afternoon so you can get out of there and get him home. I pray that when the time comes ou will find peace and strength in the decisions you have to make. Love to you both!

Heather said...

We love you guys Lacey.You are so strong,even when I know you don't want to be.Your little guy is going to do fine.He has told us ,loud and clear,in numerous ways,numerous times that he is a strong,resilient fighter.Praying for Boston to ring you guys ... give me the number,want me to call?!?! Keep your eyes fix on today.Gaze at that amazing son of yours and know you are never alone.Look towards the sky when all else fails.He will show you the way as well.That is the best advice I can give you of all.Hope you find home today.

Emily said...

Our fingers are crossed for you. I hope he is well enough to come home. You guys have a lot of hard decisions to make. I pray that you guys can find the answers!

Cammie Heflin said...

Sounds good that you may go home! He will do so much better at home!

The VW's said...

Glad to hear the news that you may be going home tonight! I pray that you all get a good night's sleep too!

I'm sorry that you have some pretty tough decisions to make! I pray that the answer will be made loud and clear to you soon! Hopefully Boston will call you soon, to talk all this over. I'll be praying and thinking about you! HUGS!!!

Hayden and Brent said...

Oh I have been away for a few days and now Im checking in on everyone and it been bad news all around! I am sorry that things arent going great! I hope you get to go home tonight! Our prayers continue to be with you and Jaxson and the decisions to be made ahead!!

sturpin said...

Sigh - I am glad that this stay is going well, but I am sad that y'all even have to have these discussions about the future and his inability to get access. I'm thinking of ya

Shari said...

I hope Jax gets to go home soon. I know you have some serious decisions to make. I will be praying that the professionals hear you and will work with you know is best for Jaxson. Hang in there!

jjpsmommy07 said...

I hope you were able to bring Jax home tonight. Continuing prayers for little Jax!

Stephanie said...

Oh, sweetie, I don't envy your position but I certainly do understand. We've been there. I'm so glad Jax will be home soon, and know we are all here and praying like crazy that things go well.

Alison said...

Oh Lacey - I am so sorry you have to have these discussions and make these decisions. I am praying that Boston will be an answer, but if it isn't I do agree that it is much better for Jax to be at home with his family. I am terrified we are going to end up having these discussions about Ashlea one day but I can only imagine how awful it is to have to actually go there.
I hope he can come home tonight.

Emily said...

Sorry my friend... you missed the Luau. I was hoping to see you there, but at the same time knew Jaxson was still in the hospital. Hope all is well.