Tuesday, June 22, 2010

Todays the day

You know I love having a blog! Its my diary, my place were I can scream and yell, and if you don't want to hear if, you can just click off! And when something exciting happens, I have so many friends to tell the good news to!
Things have been going so great lately. We had a great time with family and friends in California! And although the paperwork still makes me crazy, our adoption is moving along more smoothly than I could have ever imagined.
But today has been a rough day, and I'm ready to vent a little. So click off now if you don't want to hear it! (Of course there are cute pics of Jax at the bottom, I use those to soften up whiny posts like this!)
I really, really want our adoption paperwork submitted this week. I was hoping to have everything notarized today and be done, but of course that never happens. The lady who notarized today I didn't like at all. She whined about having to redo stuff that she messed up. I wanted to slap her. We've been signing and notarizing and redoing for two months! So don't even cry to me about it. Needless to say we still have a couple more things before we are totally done.
I've been so excited about how well Jax has been doing healthwise, until I realize that his healthy is still so sick! He did great on our trip, and thats because we made sure we had our meds on hand to keep us sane. Robinol came with us everywhere, and prevented him from needing suctioning constantly!
Tobi continues to be our saving grace as well. We started our round of that when we got home, and he's been doing better respiratory wise. But somedays at night I'm really tired of his "routine", and once again wonder why we don't get any nursing care when everyone else does! I would so love a break from especially his night routine, because its the longest, and I'm always tired already when I remember how much I still have to do for him.
21 meds, most of which have to be crushed because of his ketogenic diet. Shots, nebs, inhalers, setting up night feeds, suppositories, and switching him to his humidifier, which entails switching a bunch of tubing around! And like I said, his healthy is his bowels don't work, so liquid suppositories make him go. Night feeds consist of rigging up a 60cc syringe to his crib so his belly is always venting, because he swallows so much air with his trach. Me and Ray were just saying that going to get Makayla is going to be like a second honeymoon! Although I know after about a day I'll miss the boys terribly! But a little secret, I'm kind of glad I get to pass of Jaxson's cares to someone else for a while!
He had his monthly labs yesterday, and my ped called me last night because his sodium is dangerously low. As soon as she told me I remembered that we pulled his cecostomy out, and his sodium supplement was coming from those flushes of saline! We forgot to restart his sodium supplement when we pulled the cecostomy out. So we added that med to our regimen and avoided going to the ER for sodium levels. Its crazy, I never though calcium, sodium, and potassium could cause such problems, but man they do. Arrhythmia's and other crazy things have landed us in the ER from his electrolytes being out of whack! He gets all those supplements because he loses them in his high doses of diuretics that he's never been able to come off of. If we even try to wean his diuretics his lungs fill with fluid! Antiphospholipid antibody syndrome means a shot of lovenox twice a day he'll need for the rest of his life. So I get to stick my baby forever to prevent his blood from clotting off any more major viens. I'm so sick of calling on bills that are wrong. Why do they have to send out a statement, and EOB and then a bill, all from the same appointment. I get more mail for Jax every day than the whole family put together. I'm so sick of calling billing because they coded it under Down syndrome, and that diagnosis is NEVER covered. Why can't they get it right the first time so I don't waste my time calling everybody and their dog to make sure its taken care of?Of course I'm grateful every day that I have Jaxson, but sometimes its hard to think about how sick his little body will always be. And how much intervention it takes to keep him alive.

I can't wait to have a "normal" Down syndrome child! The girl that's helping me with my adoption paperwork from RR thinks that is hilarious. That I want a "normal" DS child, but you know what I mean. I want to sign with her and teach her to walk! To laugh when she uses those flexible legs to go from sitting to belly by means of the middle splits! You know, "normal" DS stuff!
Anyway, I feel much better now, and here's my sweet, miracle boy to soften the mood back up. I have an awful lot of pics of him sleeping. Probably because he sleeps so cute!


Kim said...

It always feels great to vent so don't worry about that! I really don't know how you do it all and keep your sanity. So sorry for the bumps in the road with your adoption but in the end it will be so worth it! And as always that Jax is such a cutie pie with those chubby cheeks!

Reagan Leigh said...

I LOVE that bottom picture. So sorry you've had such trouble with the nursing. I guess that's one positive thing...you shouldn't have to fight as hard to get services in California. It really is ridiculous to think that Jax with all of his issues, can't get nursing! Although our regular insurance immediately denied Reagan, Medicaid had to accept her because of the g-tube. I guess the biggest issue is that your state doesn't have a way to bypass the medicaid waiver waiting list. It's crazy!!

mandd3 said...

I can't imagine the stress of the adoption process. It must be so hard to wait and wait and wait. Even though Tomas is no where near as sick as Jax I do understand what you mean about a "normal" DS kid. And I still love the way Jax sleeps with his face planted in the carpet!
As for the 5 hospitals; 2 were in Orlando before we moved. 3 are here in Dallas, 2 of those are the same system just different campuses. There are 2 downtown in Dallas and a satellite in a suburb closer to where we live. Before we moved to TX I researched like crazy, and chose this area on purpose because of that "Top 25" list. I really do hope you can get to a better area soon. It is such a relief to finally be allowed at the satellite. Initially they would not admit him here but as he got older and more stable they are willing to take the chance. Of course, after yesterday's episode, they aren't so much as going to want to do a CT scan on him here. But that is ok, they transport us downtown to be close to the ICU and then transport us back!

Rochelle said...

Sorry for your bad day!

I can't believe that you can't get nursing care at least at nights with all his medical needs.

Hugs to you, hope he sleeps super well tonight and you get some rest. I don't know how you keep moving on such little sleep!

Praying tomorrow is a super day and all your paperwork sails through!

Alison said...

Very cute sleeping pic. We are always chasing Ashlea's sodium, calcium and potassium too due to her kidney failure - although her sodium is never low, its usually way too high.

I still can't believe you guys don't get nursing help!

Junior said...

Lacey I love that second pic of him sleeping. just want to kiss those little cheeks.

Shari said...

Don't worry about venting here. This is your blog! I am glad you vent. It has got to be so taxing at times with all of Jaxson's care. I can't even imagine! I know taking care of Curtis seems so tough until I read about others. I do not understand why you don't get nursing. And yes, EOBs and bills suck! I get more of those daily for myself and Curtis than anyone else. Hang in honey! Your time in the Ukraine is coming soon!

Denise said...

That is why you are our hero, Lacey. You have more to do and worry about than most of us and yet you always seem so calm, cool and collected. Most people wouldn't be able to handle bringing another child into the home, let alone one that might need some special care....you are amazing and don't you ever forget it!!!

Kristin said...

Vent away! That's why we're here. Jax looks so comfy in that last picture :)

The VW's said...

I love sleeping pictures of jax! Actually, I love looking at all pics of Jax! He is such a cutie!

He is also very time consuming for his Momma! I seriously don't know how you do it all Lacey! And, of all people that I know with a special needs child, you are the one who needs nursing, but can't get it! CRAZY!

We all need to vent every once in awhile....and you probably need to do this more often! I wish that things were easier on Jax and you.....but for the record, you seem to do it all with ease....you are a GREAT Momma! Keep up the great job! Love, Hugs and Prayers!!!

The Fluck Family said...

get the nurse! i can't imagine how tired you are. i have a "normal" Ds baby and i'm still tired all the time. i also enjoy passing off her care to someone else sometimes. you need your breaks in order to function at your best. if you get a nurse, you will have more energy and more life to enjoy your boy with.

Alicia said...

First, that last one is such a precious pic of Jax, what an angel!

Second, I am always so thankful for blogs that we can vent on and have others be there for us. So helpful.

I am so sorry things are so rough right now for you in your care for Jax. I am frustrated for you, just reading your account. You deserve nursing and you should be getting it. So backwards how some things work sometimes. And don't even get me started on diagnosis codes. Since Marissa has no diagnosed syndrome, we get that crap all the time!

Hugs to you Lacey, I am praying for you and your family all the time.

ANewKindOfPerfect said...

I am glad you have your blog so that you can vent (and yes, whine!) and it helps. It doesn't solve the issues, but it sure does make you feel a bit better doesn't it. :)

I'm sorry to notary was a b*tch. That sucks. I hope that the paperwork is done soon so you are one step closer to Makayla. Like you said, a "normal" DS baby will be so much fun!

As for Jaxson ... sometimes it is so hard to imagine getting up and doing this every day for the rest of our lives. We have had to bust out our suction machine this week. You know from seeing Peanut when you sucked Jaxson how much she hates even the sound of it. Well now I'm shoving it down her throat all morning because she can't stop gagging and choking. I don't know what the hell's going on. The GI says if it continues we should go inpatient for observation and testing. I hate that. Going in for observation and testing means there is no discharge date set which with Peanut always means an endless stay.

See, now I took over your blog to whine! LOL ;)

Meghann said...

My heart goes out to you, it sounds like a tiring routine. Jax is so darling and although I've never meet him, I love him so much! Thank you for sharing your miracle with us.

Mama Mason-Mann said...

Oh Lacey, I don't know how you do it! You're just amazing! We all have those moments where it just overwhelms us and you have so much harder then most. So you absolutely deserve some time to vent, whether it be a day or two or more.

as always, thanks for sharing the pics of Jax! Always great to see.

Hope you feel better soon.
love, aim

Anne and Whitney: Up, Down and All Around said...

glad you were able to vent and you DEFINITELY have a lot that you need to vent about - phewh (how do you spell that word?) doesn't that feel better?! adorable pics of jax sleeping!

Michelle said...

Vent away!! You need to get it out and if people don't want to read it, noone is forcing them to. It really is a comfort..does that sound weird or what?? Hang in there Momma, wishing some rest for you...

Loren Stow said...

I hope everything goes smoothly with the paperwork and you get it out of the way soon!
Holding thumbs for you!
PS - Jax IS a very cute sleeper!

Tiffany said...

That second picture of Jax is adorable! I think God made them so cute to help us all deal with everything that goes with taking care of them. Sometimes I tease Izzy. "It's a good thing you're so cute." But really I love her regardless.

I am so sorry you have so much care that goes into keep Jax "healthy". We have a lot and I totally know the "I hate the night routine" because everyone is tired. But we don't have near the amount of stuff to do that you do. God has definitely given you the strength to make it this far. Just do one day at a time. I can't ever think past today because it is too overwhelming. Praying for you and glad you will get a little vacation when you go get your sweet girl.

Michelle said...

I'm glad you had a great trip to Disney - the pictures were wonderful to see!

Vent anytime you need/want to - you have that right! And I don't blame you for needing to vent sometimes, we all do. You deal with so much with regards to Jax's care and everything - I can only imagine how much mental and physical energy that takes day in and day out, and to not get the nursing help you should be getting.

Love that last pic though; he is so precious!