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Friday, June 19, 2009

Home sweet home

We are home tonight. Yeah. He is doing ok, still very tender and cranky. And his belly is still distended. A new problem that may be SVC or heart related. When he gets mad his sats plummet and he turns very blue. We are going to keep a close eye on that and discuss it Monday with our Ped.
The meeting with our palliative care team went great. I've known them for a while because they've been following Jax. It consists of a doctor, a nurse practitioner, social worker, nurse and a chaplin. The chaplin I've only seen a couple of times because he is a very busy man. But he can't come to our meetings anymore. He knows how to make everyone cry. He is so close to God and he tells me things about myself that I never knew. The plan for us is just to sit down and talk to the boys and get their feel for life. Let them know that Jax may not be around for as long as we'd like, and get their feelings and frustrations out. We are going to try to get them in a sibs class at the hospital for siblings of sick kids. I think with Jax I'm just so afraid of how devastated the other boys would be. We plan to meet again soon.
Just chillin his his bed.
His battle wounds this time around.
Dressed and ready to go.
One last snuggle from a close friend.

I will post a pic of Jax cutdown line tomorrow, I don't want to undress it tonight. I knew they had to dig to find the vein, but when they took the dressing off to pull the line, he had a 2 inch incision with stitches above the line. Whoa, I wasn't expecting that. They really had a hard time getting that line, and had to make an incision to dig a vein out. Yikes.

I have a great story to end on though. We got dinner delivered to us from Texas. Yes, Texas. Arabella's mom (who, by the way is still in the hospital with Arabella) found a friend that lived close to us, and recruited them to bring dinner to us. My heart was bursting. She's had her baby in the hospital for weeks and she thinks about dinner for my family in a whole other state. Can you believe it? Thanks Shelly, for dinner and for being a great friend.

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20 comments:

  1. ShariJune 19, 2009 at 10:53 PM

    Lacey: I am sorry I can't help it, but my heart breaks for you and your family. Jaxson is so precious. Know I continue to pray for your family daily.

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  2. EmilyJune 19, 2009 at 11:07 PM

    What a sweet boy. Your family continues to be in our prayers during this time. That is so awesome that you were given dinner across the States!

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  3. JuniorJune 19, 2009 at 11:22 PM

    such a special surprise to have dinner brought to you.

    We are praying hard for Jax and your family.

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  4. HeatherJune 19, 2009 at 11:27 PM

    I will say it again .. we love you and you made me cry.I want to lift this from you.From Jax.From Ray and the boys.We will all find our way through this.Together,Because we are family.Always.

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  5. AnonymousJune 20, 2009 at 12:30 AM

    ALWAYS praying for you all, Jax is a real fighter and such an inspiration! Isnt it wonderful to know that real friends are always near no matter how far away they live! Dinner was an awesome idea! What a great friend Shelly is! God bless and happy to see Jax back in his own home! Megan and Keaton

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  6. StephanieJune 20, 2009 at 6:50 AM

    Your post has completly overwhelmed me. We are sending our prayers to you as always. I'm glad Jax is home, I wish we were closer. Arabella's mom is awesome for doing that for you, amazing.Lacey you are amazing, I am so glad I have met you and Jax.

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  7. Alan AndersonJune 20, 2009 at 7:01 AM

    Lacey - so glad that Jaxson is home where he should be. I love the picture of him chillin in his bed - so cute. We pray that as you have to discuss hard topics with your family that you will feel comfort and strength in the decisions. You ultimately know what will be best for Jaxson. Thank you for letting us share in your sweet boys life - we are grateful for your friendship. And dinner from Texas is so nice - what a great surprise.

    Hugs from Kristi and Carter (and all the rest of us too)

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  8. JenJune 20, 2009 at 7:27 AM

    So glad you are home! You have one tough (and very cute!) little cookie!

    And yes, I do wish we could be the ones to eat more calories! Haha! I'd eat Thanksgiving dinner everyday! I've started increasing the concentration of Gav's formula, hope it works

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  9. AnonymousJune 20, 2009 at 7:59 AM

    Awwwww he melts my heart!!! I love how you still have him stylin and profilin while at the hospital.....he he he.......

    Isn't it amazing how other people take timeout of their lives to do something great for someone...especially when they are states away??!! Now that's a true friend!!

    I am happy that Jax is home, but I am saddened by how he's having some problems.... :0(.....My heart aches for you and I pray and think about Jax, you, and your family a lot....

    p.s. I left an award for you on my blog :0).....Thank you for being such an awesome friend

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  10. Cammie HeflinJune 20, 2009 at 8:25 AM

    I'm so glad he's home. Prayers to your family and all of your daily decisions with Jax, he is a lucky little boy to have such a wonderful family.

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  11. UnknownJune 20, 2009 at 9:08 AM

    Lacy: So glad that you guys are home. I wanted to stop in and check on him. I am praying for him and your family. Give him a big hug from his friend.
    Shannon

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  12. AnonymousJune 20, 2009 at 9:13 AM

    So glad you guys are home...in your own comforts, and with family! I pray you all find peace through this. My heart is full for you, for the blessing of Jax and that you are such a great mom, but breaks for you as well and what may lie ahead...God love you all and will carry you through whatever may lie ahead....praying for you

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  13. The VW'sJune 20, 2009 at 11:45 AM

    Yay for home! I hope that you had a good night's sleep and Jax is feeling better!

    What a wonderful friend to have dinner made for you from so far away!!! God always brings people into our lives when we need them the most!

    It breaks my heart to think of a life without Jaxson! I haven't even met you guys in person, but you have touched me in such a huge way! I will be praying for all of you!!! God knows Jaxson's future and He will supply you with strength, peace and answers. Keep faith in this!

    LOVE, HUGS AND PRAYERS!!!

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  14. MelissaJune 20, 2009 at 12:57 PM

    LACEY, I'm so glad that Jax is back home. I can't even BEGIN to imagine trying to explain this to your children. Reading this made me cry....I'm so sorry that you're going through this, mostly for Jax. He's an incredible FIGHTER & I'm still praying that Boston will come through somehow....PLEASE!!!! Your strength amazes me & so does Jax's. WELCOME HOME SWEETHEART!!
    {{HUGS}}

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  15. Shelly TurpinJune 20, 2009 at 2:40 PM

    Oh Lacey, I wish a dinner could make everything better for your guys and y'all. My prayers continue to be with your family. Kiss that sweet boy for me

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  16. Mama Mason-MannJune 20, 2009 at 3:23 PM

    I wish I could send you a giant blanket that you could wrap up your entire family in like a great big giant hug. A blanket just like the ones you make for our special babes, but big enough to snuggle you all together nice and warm and safe, even if only for a moment. Safe and snuggled all together. That is the dream I have for you. . .and I hope that the thoughts and prayers that you get from all these wonderful people can be like a virtual blanket for you and your family. Hugs Lacey, to you and your wonderful fam.
    Amy, Chloe and the rest of the Mason-Manns

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  17. StephanieJune 20, 2009 at 5:52 PM

    Oh sweetie, I'm so glad you're all finally home together. If there's anything you need please don't hesitate to ask. I may be in Florida, but I'm just an email away.

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  18. KimJune 20, 2009 at 9:00 PM

    It is nice to know that there are angels out their looking out for us....even states away!

    Your family is in our daily prayers.

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  19. my life:June 21, 2009 at 5:55 AM

    Sweet baby! Ouchy...I'm so glad he's home...but this post broke my heart.
    Praying...for healing, peace, and strength.

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  20. babalismeJune 21, 2009 at 10:10 PM

    My tears fell down while I'm reading this! It's heartbreaking to see such small body with those pipes and bruises, and..OH! I can't help much from here, but I wish I can help you out with anything! All my prayers to you and Jaxsons, and the whole family.

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