Sunday, June 21, 2009

Shh, he's finally sleeping

I'm writing this post while everyone is asleep because I have been up with a screaming baby for the last hour. I finally had to do the put the baby down and walk away thing. I think he has finally fallen asleep on the futon in our computer room. I haven't slept for the last four nights. I don't know what his problem is, he's never had pain like this with other surgeries, if thats even what the problem is. He still drops his sats when he cries and he drops the second the oxygen is out of his nose, so his alarm is going off all night long. I think tonight I'm going to put a piece of tegaderm over his nose to keep the cannula in. (Is that mean?)
I really hope his follow up with our ped tomorrow is productive, I'm going crazy. (Besides being super cranky)
I found out in the hospital that the supplies I will need for his new tube are not carried by our homecare company. I have to go through a different supply company. Someone else to have on my phone list. I had also heard they weren't covered by my insurance, but they do all colostomy supplies so how can that not be covered. I am going to call my case manager tomorrow and let her do all the dirty work for me to find out whats covered.

Oh, and Happy Fathers day to my dad, the guy that can do just about anything. Sing, play music, draw, fix things. If you ever need anything, he's the man.
And to my hubby, thats been the rock through all of our problems. Bringing us closer together instead of tearing us apart as we deal with all of our stresses. I love you more than anything.
The holidays seem to take the back burner nowdays, I still have birthday presents I need to get out, so I totally forgot Fathers day was today.
Sigh..
Thanks to all my friends for your support and kind words. And for loving my baby that you've never even met.

20 comments:

The Hortons...one day at a time. said...

Oh man, I hope you get lots of slseep tonight and that Jax's appt goes well tomorrow! We are still praying!!

sturpin said...

Poor Jax - You know in insurance how there is a max out of pocket? I wish there was a max on how much these little ones had to go through. Then they could just coast for a while without pain or tubes or anything.

Sorry to hear about your insurance/medical supply. I just meet my third medical supply company of the week. I am hoping this is it!

hang in there - I hope you can get some sleep!!

Rioux Family said...

Ya, are daddy is the best! GO DAD! *cheer* hehe =)

Junior said...

Lacey big prayers for Jax and that you can get some rest.
Hang in there, big hugs.

Happy Fathers day

Angi said...

Hoping tonight goes better...every parent can understand the stress of a crying baby, it's gotta be worse when you know he is in pain...thinking of you today and praying for a better tomorrow, Angi

stephanie said...

I am praying that everyone can get some sleep tonight. Hope you have a good appointment tomorrow.Hang in there, Lacey! I know what else can you do.

Emily said...

I have to admit... I just cried when I read this post. I wish so bad that somebody could help your sweet baby feel better. Of course we have never met, but with all you have to go through... you still seem so strong. I pray that all will go well.

The VW's said...

I've been thinking about you guys and praying a lot! I wish that there was more that I could do for you and Jax! It makes me so sad to know that he is in pain and that you guys are not getting any sleep! I pray that this changes soon for you!

Hang in there, as if you have a choice, right?! Let me know if there is ANYTHING that I can do from far away! LOVE, HUGS AND PRAYERS!!!

Kim Rees said...

Lacey, continue to think about you and pray that all will turn around quickly and Jax will get back to normal. Insurance companies can be such a pain in the butt! I feel your pain girl! Hang in there it has to get better.

Zachery&Allie*Mommy said...

Hang in there Lacey..I know how that is thoes machines make you want to throw them out the window..I know when zachery gets sick I have to suction his trach non stop, the o2 machines goes crazy, all the tubes in wire tangeled up, and in the middle of that the poor child is the one not feeling well, I know you are tired and exhausted.oh man I just know I truly know what you are going through..I feel for you, I'll keep you in my thoughts and prayers that Jax's gets to feeling better soon, and you get some MUCH needed rest! And for your insurance, raise some blank...blank..blank!:) They have no clue, all the people you have to keep track of whos you get what from where. just stay strong things' will eventually pan out for you!

Melissa said...

I'm so glad that you have your case manager...YES, let them take care of the dirty work! That's rediculous for them not to cover Jax's supplies!
POOR little Jax...Hope that everything goes well tomorrow. Please know that I've been thinking of you guys ALL WEEKEND!!!!
{{HUGS}}

Stephanie said...

Always sweetheart, always.

Terri said...

Lacey this stinks. I am so sorry he is having so many struggles. You ALL need a freakin' break. I'm sending a whirlwind of prayers right this second. Love that your friend organized supper. We moms have to stick together for goodness sakes! Sad part is we all know how it feels. My heart is heavy for you. Better days are ahead I promise.

Kim said...

Praying for a peaceful sleep tonight.

Anonymous said...

Lacey,
You must have a big S stitched on your shirt because you must be SuperWoman! You have so much on your plate and you're just amazing. Your family and Jaxson are in our prayers. I wish you a good nights sleep and a happy boy. I'm sorry all the insurance/supply stuff just adds to the mess. Dealing with all that must be the pits. I look forward to reading how his appt goes tomorrow--

Patty and Jaxon

Conrad, Megan and Our Precious Keaton said...

Hey Lacey, sorry to hear about the lack of sleep - it really can make us feel down in the dumps.. So I hope and pray that tonight Jax has a much better night and that both of you can get some rest! I really do hope that your insurance covers what you need it to cover - that at least takes away a bit of the stress.
Stay the amazing mom you are and please give Jax a huge hug from us!
God bless, Megan and Keaton

Loren Stow said...

I am so happy you're all home again! I am sorry to hear that Jax seems to be in so much pain! I hope that someone can help with this soon!
I am thinking of you all!

Michelle said...

Jax has been in my prayers; I'm glad to hear he's home now, but sorry he's having trouble with pain, or something, this time around. Praying you can get some answers from the ped. Also sorry you had to meet w/the pallative team and start to make some hard decisions :( I'm sure that's not easy to think about.

shannon said...

Hope that dr appt went well, and that you get some sleep tonight.

Regina said...

Hope all went well at the dr. And I hope Jax will sleep for you soon! It's tough when they are hurting and there's really nothing you can do to console them.