Tuesday, May 17, 2011

snot, seizures, and stress.. oh my!

This is why I always put a onesie on Jax. I even have tank top onesies I put on in the summer time. But it was so dreadfully hot in Florida, that I left the onesies off. That lasted two days! He can get to his tube, and causes major problems. Stinker!

The cold is slowly making its way through the house. The only one not affected yet is Jax. How can that be? I have no idea! Arina is doing ok, still having fevers and still oozing snot. She did need oxygen last night when she was asleep, but she's fine during the day.

I took Jax to neurosurgery yesterday to discuss surgery for the VNS. Right now surgery is set for July 12. As soon as my insurance approves it, I'm going to try and move the date up. The surgeon asked me if I'd heard anything about it. I told him I'd watched a DVD, and if I knew it was this easy, I would have asked for it a long time ago! He laughed and said that its not quite that simple, especially for Jax. He does think its the best option for him right now. He is concerned about the incision on the neck. DS kids have generally short necks, that combined with trach ties, and puffiness, makes it extremely difficult to find a place to make the incision. He said we'll leave the dressing on that site until it is totally healed, to protect it from the trach ties. He's also more worried about infection at that incision site, and also the fact that he's on blood thinners. Jax will stay at least overnight, for that reason, and also because he usually requires the vent for a while after surgeries. Which is not a big deal with a trach, but has earned him at least one night in the PICU after surgery. I'm hoping its only one night, but Jax doesn't have a good track record with surgeries! I want the surgery done quick, Jax is having more and more seizures, and they are lasting longer. Last night he was up to 4 minutes on a seizure. I was dusting off my diastat when he finally fell asleep. I've never seen him fall asleep before the seizure even ends.

Still no news on our adoption tax credit. I joke with Ray that we adopted at the wrong time! And also joke about..is there such thing as post adoption fund raising?! When we adopted, we raised maybe 4,000 out of the 24,000 we spent. Right now people are making 15,000 on one fundraiser! Its crazy! What has put us behind is Ray didn't get the short term disability we were promised for his time off. So he got payed for one week out of the six he took off. We also knew that we would be getting 13,000 for the adoption tax credit. Little did we know that the government was going to be so crazy about getting people their money.
Was international adoption the wrong thing to do? I look at Arina and know what her life would be if we hadn't rescued her. And we love her so much! You know that Andrea with Reece's Rainbow always says..."there's not a shortage of families, just a shortage of money." How true is that??
I think we are just questioning so much right now because we are so strapped. Ray still thinks he should come home and forget about the move right now. Having him here won't help the financial issue, although we wouldn't have to pay for him to come home. I really hate to do that, this move is what we've wanted for 13 years. But we haven't seen daddy in over a week, and as it looks right now, not this weekend either.
I really wish the answers would just fall out of the sky and hit me on the head. Although I know that's wishful thinking, and it just isn't that easy!

15 comments:

Michelle said...

Praying for you, friend, wish I had some sage words of wisdom. Just prayers.

Scrappy quilter said...

Oh my, you have so much to deal with right now. Praying the decisions will become easier to make. It's not easy living in limbo. Praying for Jax and this surgery too and that the government will come through with your adoption tax refund. Hugs

Rebecca said...

Oh, gosh, those are some heavy things to deal with right now. I'm sorry, Lacey. I hope that government $$ comes soon - I wonder what the longest amount of time is that they're *allowed* to wait to pay that out?

((hugs))

Becca said...

Oops, didn't mean to post that from my work account...

Team Carter Jay said...

Lots and lots of prayers!

Mama Mason-Mann said...

I'm so sorry it's so hard for you right now, especially because i know how much you want this move. I hope hope hope that it all works out for you in the long run (and the SHORT run, for that matter!) I don't see why you couldn't do a post adoption, Jax's medical costs, help you move fundraiser! ;) I'd certaining contribute. Good luck with whatever you decide!

Meghann said...

Wow, that is stressful. Prayers for you guys.

Mel said...

Lacey, I know hoe you feel about the money stuff. We are really scraping too because of my losing my job while we were gone to Ukraine to bring home Timothy. It is so hard. I hope things work out soon for both of us! :( Hugs & Prayers!!

Rochelle said...

Sorry about all the sickness at your place and the tax money frustration! UGH!
You can never adopt at the wrong time, you got your princess just as God planned =)!

Corinne Judy Smith said...

I'm sorry! Can't even imagine having to live apart from my husband. I hope your money comes soon. I agree, why can't you do another fundraiser? Might help a little.

Anonymous said...

I'm sorry you are feeling strapped...stupid Govt :(. Just remember what you saved your sweet little girl from, you are a hero of the highest form. Trials suck! No way under no way over you just have to go through them which is so much easier said than done. If only we could see the big picture. I admire you and I don't even know you.

Jessica said...

Oh man-o Lacey. I know this has got to be one of the hardest things ever, but I also know that you and your family are able to overcome any hard obsticle that stands in your way. You two need to make the best decission for your family and not knowing what the best choice is, is extreemly frightning. If you need a friend come bother me, or i you, I love you guys!

Kristin said...

I hope we sent the right paperwork in for our tax credit! You're making me nervous. Hope Jax continues to avoid the crud :)

Ali Rae said...

If you want to talk to any families who have children with a VNS please let me know. I work with many. Cyberonics is also a wonderful resource. When I've talked to them I feel like I have known them for years.

Shelly Turpin said...

I am so sorry Lacey! I hope something gives soon!