Friday, March 20, 2015

Hoarding, buried alive!

I am a supply hoarder! 
And I am probably not the first person to be extremely proud to own that title!
The reason I'm so proud is my hoarding has saved us a lot of money, time in a hospital, and quite possibly Jax health.

Besides Jax two sets of shelves in his bedroom, I have supplies stashed....

In every closet....

And every small space available!

We are a month behind our trach/vent supplies. 4 weeks we haven't received a thing. 
Jax has technically three insurances, yet our home care company still can't pull their head out and figure out how to bill our supplies to his primary insurance, so they just stopped sending them! It doesn't matter how much coverage you have, things still get denied. There are many things We have to fight for and still can't get our hands on, things Jax needs.
We are hoping we finally have the right authorization sent, but who knows how long it will take to process. 

Lucky for me I hoard!

Because this little man deserves everything he needs to thrive!! 
Even if that means being buried in supplies!

Thursday, March 12, 2015

Birth family update!

I feel like I left everyone hanging with our story of finding Arinas birth family. 

Well it was indeed them! 

Her parents were so excited to see pictures and know that she had a family. Her mom says she was so upset, but they couldn't care for a child with special needs. She said she was depressed for a long time and that there's not a day that goes by that they don't think of her. We sent them a bunch of pictures, and we got pictures of her little brother.
Is this not the spitting image of our princess? From the blue eyes to the flat nose!

Her family is sending us a package, and we are getting a package together to send to them, including something special from Disneyland for her little brother! 
We are so excited to have a relationship with them! It's another great way to keep Arinas roots in her life!

Thursday, February 26, 2015

Sickie mcsickies!

Jax has been super super sick and I haven't had time to update his facebook page, let alone the blog.

The crazy thing is it was a simple Trach bug, that kids with trachs get all the time. But this time it went into his lungs and caused pneumonia. He acted totally fine, like he normally does with tracheitis, but his oxygen need was getting higher and higher and his work of breathing and respirations were too. We hit the ER only because pulmo couldn't get him into clinic, and we needed tests. I didn't feel like he needed to be admitted, he wasn't so sick I couldn't do it at home. He was tolerating feeds, and I had all the respiratory support at home. But I lost the fight to go home. He is known to have drug resistant bugs, so he was started on two new IV antibiotics. Because they were new they wanted to make sure he didn't react to them, we had to stay. So we spent 5 days inpatient that could have been spent at home. He was on 4-5 liters the whole time, and that is totally doable at home.

But Friday on the way home from the hospital he don't tolerate the car ride well. He coughed and coughed and desatted. I got stuck in traffic when there was a fire on the freeway. I was over in the toll lanes and couldn't pull over. His sats kept dropping and I finally had to call 911. They helped me find a pull out on the left, and a CHP officer drove me down the shoulder past the accident so I could just get him home, once I got his oxygen back up. The officer was fantastic!
After we got home he just tanked! His oxygen need went up to ten liters, which is as high as I can go at home. Even on the ventilator he was breathing around 60, which is crazy for him. Pulmo didn't want to admit him if at all possible because they hospital is crawling with rsv and the flu. Since he didn't have either we didn't want to add that to the mix. 

Sunday night I was out at Disneyland with a girlfriend that was visiting from out of town. I got a phone call from tanner that jax had a grand mal seizure and wasn't breathing. Mondo called 911 while Ray ruscesitated Jax. Disneyland is literally ten minutes from Jax hospital, but the paramedics thought Loma Linda was closer. I told them over the phone no, it's not closer, that I didn't want him there and I wanted him at choc where the docs knew him. 
So instead of being right by the hospital I had to drive 45 minutes to get to my son! 
Then I almost punched the security guard when he thought I was going to wait in line at the ER when my son was brought in not breathing! Not going to happen!
When I got there he was passed out cold. Versed had stopped the seizure.

We have no idea why jax had the seizure. Out of all the seizures Jax has, he has never had a grand mal that made him arrest. Never!
Since I wasn't home I can't speculate on what happened first. Being sick can lower your threshold with seizures, but I still would never have imagined he'd have a seizure like this!
Now over a week later he is finally almost back to baseline. 
What worries us is how sick he got from a small bug. He's never been that sick from tracheitis before. It has us 
really worried about the bigger bugs like rsv, which is still running rampant here! So we are just being super cautious with our fragile little warrior boy! We have to keep him healthy and happy!!

Saturday, January 10, 2015

We have found Arina's birth parents!

Well we haven't verified it yet, but she is from a very small village. That name in that village could only be them. Not to mention there is a younger brother that is the spitting image of Arina with the same big blue eyes.

We have a dear friend Ellen, and she is from Ukraine. We met her at cvs where she has been helping us with the chaos that can be Jax medications for three years. Her mother even came to America to visit and brought Arina a bunch of Ukrainian gifts! 
Last night Ellen and I were talking about Arina's birth parents. She is a little more harsh than me, saying she thinks its horrible that they gave her up! I feel like they didn't know any better. This is how their very small village is. If she had any major medical problems they wouldn't have anywhere to take her. The nearest hospital was in the city the orphanage was in, Cherkasy, 2 hours away.
But Ellen was able to find her father in a Russian Facebook page. There she found the pictures, which I can't post because we do not have permission. The bad part is we don't even think they have a computer. Last time he was online was in Oct. 2013! But our super sleuth Ellen found some relatives in his friends list and contacted a cousin. She is trying to get her to tell him to get online. I'm really hoping they would like to see pictures of her now, and would like to get to know us. But I'll understand if they don't want to get involved.
I have mixed emotions now that I've found them. I've always truly thought that they loved her. But they were young, and scared into giving her up by the hospital staff. I see this little brother and think, oh my gosh, Arina has 5 brothers! It's all a bit surreal, and I hope it turns out to be a great thing, finding them. And that they will be amazed at what a beautiful little girl she has become!

Wednesday, December 31, 2014

A new year coming!

Ok I swear swear swear I'm going to try and post once a week! That is my New Years resolution!

Things have been quiet around here, which is a good thing in the medically fragile life! In August we switched home nursing companies and finally got a great nurse! She currently works three days a week and we love her! 

It's a good thing because in February, this Mommy is starting school! Yep, I'm finally digging in and going back to finish nursing school. Big things will be happening this year, and I feel like its the beginning of amazing things! Daddy will become the stay at home parent, and when I'm working we will finally be able to buy our dream home that will be Jax friendly! And then we hope to adopt one more girly to our home, and give Arina a sister!

Jax has been doing good too! We are celebrating no unplanned hospital stays in 2014! We had a few overnighters for various adjustments, but no big unplanned stays! He still has big problems with vomiting and blood in his g tube, but we don't know why and it hasn't really gotten worse. He can't have carafate, which really helps his stomach, because it clogs his g tube. If his g tube can't drain he vomits more, so it's a hard thing to juggle. Respiratory-wise he is still on higher oxygen needs than he used to be, but we're just thinking this is a new normal. Since there is no significant change in his heart function. Those lungs have taken more than a couple of nasty beatings in 9 years, and their going to be finicky! 

We hope you all had a great year, and here's to an amazing 2015!!!

Tuesday, August 26, 2014

Back to school

I promise I'm going to try and keep the blog updated at least once a week! 
But since I was here last we have moved, carter started on a travel ball baseball team, and the kids have started school! 

Travel ball is a competitive baseball team. That also means its a lot of work and commitment! Carter and daddy are both having a great time with it though! 

School is insane because I now have 4 kids in 4 different schools that all start around the same time! I have to get the three older boys to school and back home in time for Arinas bus to come at 7:18. It's absolutely crazy! Jax hasn't started school yet because its a lot more work to get him ready. He will go two days a week for a half day. The good thing is he will go to the same school as Arina and they will ride the bus together. we switched nursing companies and have a new nurse that has worked a few shifts now. We really like her, and she will go to school with Jax!

Because of the crazy school schedule I came up with a way to get lunches ready quick. I have a cold and pantry bucket, with multiple lunch items. I have the boys grab a few things out of each bucket, and lunch is done! I just don't have time to make their lunches and get everyone else ready to go, now that Arina goes in the morning as well.
It's worked out really great so far!

Overall we've been busy, but busy is how we like it! We're coming up to Arinas 5th birthday next month! We can hardly believe she's been home 4 years! Sometimes it feels like yesterday and other times it feels like I gave birth to her myself! She is now potty trained. It took a whole two weeks after she showed me she was totally ready! It was so fun to send her back to school in undies. She is such an amazing little princess!
Just loving life with my amazing family and friends!

Tuesday, June 17, 2014

I'm so sorry to all of our blog readers! I've been a bad, bad blogger!

Things are good around here! Crazy, but those who have 5 children tend to be a tad crazy! We found out right after my last blog that we had to move. We sold our home in Utah when we moved, and haven't been able to buy here in Cali yet, as prices are much higher! Finding a good home, with everything we need was not easy. And of course moving a 3000 square foot home is beyond stressful!
But we have been moved about a week, and we are finally winding down and able to relax a bit!

Jax is doing good as well. He's had some tummy issues. Bleeding out of his g tube, lots of gagging and vomiting. This is causing respiratory issues because he aspirates every time he vomits, so he has been above baseline oxygen for a couple weeks now. We started Carafate, and that has been a wonder drug! No more bleeding, and I'm actually getting a lot less acid out of his g tube as well. I'm just hoping once the drug is stopped he continues to do well.
He is having a new port placed on the 27th. We can't wait to have our access back. Blood draws have been a nightmare! We have labs that need to be done but we are holding out as long as possible to hopefully have our port back first!
Still fighting the school with Jax. For some reason they have been really bad with getting him what he needs and deserves! Now that we have a nurse that we trust to send Jax to school with, we are anxious to give the classroom a try. We were supposed to amend his IEP so he could start extended school year last week. Now we are nearly halfway done with extended school year and still no IEP! Don't worry, I've just emailed the director of special ed, because I am at the end of my rope with them!

Arina is her crazy, princess self! She is starting to say more and more words! Now if we can just get her to put more than one word together! She thrives in school. She actually does better with her wandering and running at school than at home. She's escaped the house a few times, and now with all the baby locks its like Fort Knox around here! But at school she no longer needs someone to hold her hand outside. She follows the line and stays with her class.
Just in the last few days we've also had some exciting potty experiences. She is pointing to her diaper, and when I plop her on the potty, she's gone three times for me! I think she's finally grasping the concept of what the potty is for!
I can't believe how big she is getting! It seems like just yesterday we were taking her out of the orphanage.
I am so blessed with my amazing babies and wonderful family and friends!!