Because it's magic!

Why we love our Disney CM's!

Because they make life magical

Every single day!

Thank you for loving our princess like we do!

One rough winter!

Its hard to even think there is a winter when it's warm all year long! 

But this year definitely showed us a cold side! We have all been sick nonstop this year. Jax hasn't been this sick since we moved to California, nearly 4 years ago!

He is finally back to baseline after having rsv. I actually got sick first, surprisingly Arina only got an ear and sinus infection. Jax kept going up and up on his oxygen needs, up to 10 liters. Respirations in the 60's, all this on the vent. Monday the 6th we took him to Pulmonology. She kept telling me he needed to be admitted and I kept resisting. I hate admitting him if he doesn't need IV fluids or meds, and his oxygen levels are doable at home. But I lost the battle, and we were sent to the er to wait for an open picu bed. 

While in the ER he tanked on us. His blood gas was bad and his color was grey. He was put on the more powerful hospital servo ventilator and his rate and peep settings were increased.

While in the hospital we got the results that showed rsv. Of course pneumonia thrown in there and his x ray was awful! The x ray on the right was when he was sick in feb. The one on the left was that day. Almost a complete whiteout. 

After a couple days he was transitioned back to his home vent and home settings. 

We also found out during this stay that his port is not fixable and will be replaced after his respiratory status is good. We also found out that after 7 years, we may be able to come off lovenox shots! He will always have his clotting disorder, but since he has no new or active clots, aspirin should be enough to prevent new clots from forming. It will be so nice not to have to poke my sweet boy twice a day anymore!

I think I'm going to douse my home in Lysol, and keep my fingers crossed that we are done with the sickies for a while!

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!

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!

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!!

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!

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!!!