Keeping the princess busy!

After our tornado princess's day of chaos, I thought maybe if we give her a job, keep her busy, she wouldn't be so destructive!
Since her big brother is so much work, we thought we'd give her a Jaxson job.
At first we thought she could do Jax meds. She was excited about this at first, I mean those bottles are super fun to bang together...

But then she thought about the responsibility of making sure Jax got over 20 meds a day. Some life-threatening if given wrong, and she didn't think she was ready for that big of a job yet!

Then we gave her a go at getting Jax feeds, another fun bottle to shake.

But those fine motor skills aren't quite ready to get that tubing primed!

In the end, she found her job, and the one she's been best at all along!
Keeping her big brother busy, and making sure he gets plenty of kisses a day.

She is very serious about her job. After all, its a big responsibility!

But so far its keeping this tornado out of trouble!

Oh. My. Gosh

Today has been a hell of a day. And I'm telling you right now that this post is all over the place. But it matches my feelings today, I'm feeling a little bipolar. Extreme highs and lows, all in one day!

But let me start with Monday....
Monday I made a call to my pediatrician only to find out her office was closed. It was a Utah holiday, but for some reason I never remember them being closed before. I was unsure of waiting any longer with Jax and his horrible coloring. I talked to the doctor on call, who at first I was told it was a doctor that knew Jax. But when I got the return call, it was someone totally different. Of course she told me I needed to take him to the ER, just to have him checked out. With his complicated history, its better to be safe than sorry. So in we went.
I've come to the realization that if Jax doesn't send people running in the ER, than he probably doesn't need to be there. I mean, when you have lifesaving equipment in your bedroom, you don't go to the ER unless your super sick. So when his vitals were fine, particularly blood pressure, I thought we shouldn't be there. They did basic bloodwork, that also came back fine, so although the doctor said Jax makes him nervous, we can't sit in a hospital and wait for him to do something. So I spent 5 hours in the ER for nothing!!

Today, I had big plans. Plans to paint and clean so my house can be listed this weekend.
If you didn't see my post from earlier today, here's a glimpse.
Literally 1 second after setting down the paint, Arina was covered! I didn't even know she was in the kitchen! 30 seconds before she was happily playing in her room.
So my day started cleaning paint off a mischievous toddler!


Then, as I'm painting, I notice that the color is way to dark, so my touch up job was going to have to be painting the full walls!
That was when I had my panic attack! I called my realtor and said I'm done, I'm officially waving the white flag. I can't do this on my own, its just too hard. He told me he would come out tomorrow and take pictures, so we can get the house listed, and then he would look at the paint and we'd figure it out!
I went down to paint the boys room, and thank goodness the paint matched perfectly, so I was able to finish that job quick.

My pediatrician called, we talked about Jax. She agreed just to watch and see what he does. Then she told me she was going to help me find a ped in California. I almost teared up right then. I honestly don't know what I'm going to do without her. Our relationship has gone farther than doctor/patient. She was my therapist when we just didn't know how we were going to survive. She sat at Jax bedside when he was dying, and when he came back. We've cried together. We've swore together. I love her with all my heart and can't stand the thought of not working with her!

In the afternoon, we are finishing up the boys room, and Mondo runs downstairs telling me Arina was choking!
I ran upstairs, and indeed she acted like she was choking. She was panicking, foaming at the mouth, and every time she would try to breathe in, no air would pass. She was crying, so I knew she was moving some air. I didn't panic, I'd seen much worse than this in the hospital. My training kicked in, and I did infant Heimlich. It did nothing. I knew I couldn't put her in the car, I didn't have time to drive her to the hospital, so we called 911. When they paramedics got there, she was moving a bit more air, but she had tons of secretions. They kept asking me if she was sick. I told them no. They sucked her out with a bulb syringe, and prepared to transport her. As the paramedic sucked her out a bit more, a marble fell out of her mouth! I don't even know where that came from! My boys don't play with marbles. So thank goodness we avoided an ambulance ride for her!
Than my pediatrician called back and said she looked at his labs from the ER. She said his bi carb was the highest its ever been. That really surprised me. I really didn't think anything respiratory or his Co2, his sats have been pretty good for him. But it was even higher than it was in August when we started the vent. So for some reason he is not oxygenating like he should, and she said it could indeed make his color yucky, even without the respiratory symptoms. So I'm supposed to call Pulmo tomorrow and she what she says. I don't know what she'll do, we've already upped his vent settings once. I don't know how much higher we can go!
So good news is my house will be on the market in the next day or so, bad news is my little's are really giving me a run for my money.

Quite the bipolar day, I'd say!

Two seconds

It only takes two seconds to set me back a full day!



Its been a long time since I had a destructive toddler in the home!
Man I've got a lot of remembering to do!

The mommy radar is a dinging!

My mommy/nurse radar is going off like crazy right now. Something is just not right with Jax. I hate when he pulls this. So far his oxygen need is baseline. But his color is horrid. He's white as a ghost, and his lips are either blue, or as white as his face. They are also chapped and dry, something that happens when things are just not right. He's not sleeping well at night, he wakes up at 6 every morning, coughing like crazy! He doesn't usually cough as much on the vent, because the positive pressure keeps his airway open. He's lost weight in his waist and legs, but his face and chest remain the same. His little hips are poking out big time. The bad part is with him it could be so many different things. It could be heart, pulmonary hypertension, or remember he went without his blood thinner for two days in Cali, maybe he threw another clot somewhere. Looks like tomorrow we'll be paying a visit to our ped, and probably getting oodles of bloodwork!
This picture doesn't show how he really looks. What I need to do is put Arina next to him, so you can see the difference. But he's very pale, and its hard to see where his lips start because they are so white.

I think in every post I say we've been so busy, but the busy keeps on going! My house should be listed tomorrow or Tuesday! Finally, it should have been listed months ago, but I'm telling you I smack anyone who says its not hard alone with 5 kids to get it ready! My dilemma still is what to do about a real estate agent. I have a friend that is looking for a bigger house that wants to come look before we list it. Of course it would save us both a boatload of money if she buys it! But I just worry that her house doesn't sell soon, then we both have to wait to close.
And if she doesn't want it, I don't have time to sell it myself, but also can't pay 15,000 to a real estate agent (I also really don't think they do 15,000 in work, honestly!) So we'll see how it all plays out.
This weekend Carter had his last baseball games in Utah. Its sad, but I can't wait for him to be able to play all year in Cali. No snow break there!

Best catcher in the league!

My two sisters are here, one from Oklahoma, and one from California. My one sister has 4 girls, the other, one little girl. So my moms house went from 99% testosterone, to almost all estrogen! Of course Arina is loving little girls to play with. And I love seeing my beautiful nieces!

Sadie
My oh-so-beautiful Hailey. Those eyelashes and cheeks are just plain yummy!!


Arya, she has a mass in her brain, right behind her eye. It caused seizures, which are controlled for now. And although they are almost positive the mass is not cancer, it may have to come out, which would be brain surgery. So we are hoping the neurosurgeon has some good news!

baby Olivia!


I missed pictures of my little Evie, I'll have to get some tomorrow!

Oh, and our friend Gabe is doing much better. He's off sedation and off the vent. Thanks to everyone's prayers!

Prayers needed

No, these prayers aren't for Jax, but their equally as important!
Jax buddy Gabe needs prayers. Him and Jax are little twins, different problems continually put them in the same situations....sick! Gabe has spent long days extremely sick in the PICU like Jax. So many of his pictures are the same pictures we have.
His mommy was supposed to send me a picture of Gabe with his blankie. He is the first child to get a blankie since I started back making them after the adoption.
He went in for a simple surgery today, had major complications, and now is paralyzed and in a medical coma so he doesn't move his little airway.

So instead of a smiley Gabe picture with his blankie, its one of a very sedated, sick little boy. And while that's what the blankies are for, to comfort, I still hate to see these situations!

Please keep this little man in your thoughts in the coming days as he recovers!!

Deep breaths!

Deep breaths! In and out!

I'm wondering if the drive home was enough time for me to cool down before writing this post. I'm not so sure it was, but here it goes!
You know Jax had dental work scheduled today under anesthesia. The hospital called yesterday, did his whole pre-op checklist. Got meds, and history, gave me times he had to stop eating and what time to be there.
We checked in at 8:30, went through the whole routine, changed into our medical garb, talked to the NP, and she walked us back to the waiting room where the docs come talk to us before taking him back. I began to wonder if something was wrong because we sat in that waiting room for a LONG time. She came back multiple times to ask me questions. Did they tell me not to give him his lovenox this morning?
No
Does he get labs to check his levels because he's on blood thinners? Platelets, PT-PTT?
He gets platelets in his CBC's, but they don't routinely do PT-PTT. Along with his monthly CBC, he also gets an anti 10a level, which makes sure that he's on the right dose of lovenox.
Off she goes again.
Soon the anesthesiologist and dentist come back. He tells me that he called hemoc and his cardio. Hemoc was adamant that he should have not been given his lovenox this morning before the procedure.
No one told me that yesterday. I wasn't concerned about it either because he's not being cut open, usually the lovenox is ok if there is no incision.
But anesthesia says we are going to have to reschedule! That Jax was far too complicated, and he wasn't going to take the risk! We sat in that hospital for 3 hours, going over history with 2 different people before we were told this wasn't going to happen!

Do you know your son is extremely complicated?

Uh, ya! We live it every day!
Are his toes normally blue? And his legs this mottled?
Yes, he has horrible circulation.
Your saying his airway collapses even with the trach?!
Yes, yes, and yes again!!

Come on people! You've seen this child for 5 1/2 years now. You should be able to look up every snippet of information ever taken on him on your trusty computer.
Once again you have wasted my time, and made me feel your incompetent!
I'm not just saying this because I'm the mother of a medically complicated child, but I do indeed have a degree to work in this hospital, and actually did work there for four years! So I can safely say that its not rocket science!

I do like all these signs now telling me that moving is the right thing to do! That its no longer about wanting to be close to the beach, and that daddy wants to move back where he grew up. Its not even about moving so we don't have to deal with having a wheelchair bound child in the snow. My son needs better care.
And although we are still worried about where we'll live for the first little bit, I'm positive it will all work out. No one wants to rent month to month, and we want to buy as soon as possible, because rent will actually be a lot more for us than a house payment. We may end up in an extended stay for a bit, but it will all be worth it in the end.
My warrior has worked far too hard for us to continue giving him less than perfect care! Its not fair to him.

Happy Heart day!

Today is Jaxsons heart-iversary! He has actually had 3 heart surgeries, but the one on July 18th was supposed to be his full repair, and the one that finally got him well enough to come off the ventilator and come home. I can't believe its been 6 years since he's had a heart surgery! Wow! He still has a VSD, that after 6 years still hasn't closed. Since I'm not happy with my cardiologist here, I'm excited to see what are new cardiologist says. The VSD hasn't caused too much problems because his pulmonary pressures have been so high, that the VSD hasn't been able to shunt blood the wrong way. The PH pressures are pushing it back.
And since I can't find my pics I loaded from his heart surgery (they were pre-digital camera) I'm just going to link you to the post last year, which actually shows his last two heart surgeries. I look at those pictures and can't believe how sick he was. He was so puffy, and from being on the vent for so long, he had the horrible smoker cough, and that pitiful cry that had no sound because of paralyzed vocal cords.

Tomorrow my warrior will once again go under the knife.

Ok, that was a little dramatic! He is not actually going under the knife, but under anesthesia again. He is having some dental work done. I hate that we have to put him under for that, but no other surgeon will piggyback dental work, because of the bacteria dental stuff puts into your blood. It should be a same day thing. I always say should with Jaxson, just so I don't jinx myself. So your prayers are once again appreciated.
It has to be same day, because I have to go to the airport in the afternoon to pick up my sister and nieces from the airport!
They are coming from Oklahoma, and I haven't even seen my littlest niece yet, so I'm super excited!!

My big boy!!

A lot went on this week. Tuesday Jax had his VNS turned on. They turn it on the lowest setting, to see if he reacts negatively to it. I guess it can be irritating, and make kids cough.
Cough!
We already have coughing problems, we don't need anymore! But he did fine, and she turned it up a bit more. We'll go in in two to four weeks to turn it up one more time. Its hard to say right now if its working or not. Because most of his seizures are sub-clinical, the only way to tell is to get an EEG. Although the other night, as I was putting him to bed he had a seizure, so I grabbed his magnet and swiped it across the VNS. In only a second or two, the seizure stopped. So I think its indeed working!
We also got our longer trachs in the mail the other day. Man they are abnormally long! So now my 5 year old has an infant trach, with an adult length! Sheesh, he really doesn't do anything normal!

Yesterday Jax had his last therapy with his OT. We would have had to say goodbye to her anyway when we moved, but she is quitting to stay home with her girls. It wasn't any easier because she's had him since he was a baby! Almost 6 years working with her.
But as she was sitting there with him, he looked so big to me! He is starting to look like a little boy instead of a baby! Its hard because he is so little, and because he can't sit up, so it makes him look young. I had to grab the camera, (even though I don't have daddy's nice camera, he stole it back) Because if you look at these pics, he looks like any other little boy! You'd never know that he can't sit up on his own, or even hold his head up!
With his therapists help, he can hold it up for mere seconds, but its long enough to take pictures!

So I can look at these pictures and see the little boy he would have been, no brain injury. But Lord knows I wouldn't trade him in for the world!

More good news!

Thanks to everyone for your advice. Its nice to hear from people that read your blog! After just reading the first couple comments I had to agree, it will be easier just to sell! I wanted to clarify a couple things I didn't mention. My dad is here, so he would be the one to be like the maintenance man for the house. The other good thing, we paid cash for our house 3 years ago. Plus we bought it in foreclosure, so unlike most people, we are not upside down in our mortgage. Even though housing has dropped a bit below what we paid, we can still sell and walk away with plenty of money to put down on a house in Cali!

After getting bad news yesterday morning, the rest of the day went fabulous! I opened a letter saying that even after appeal, Jax medical bed was still denied! I can't believe it, there must be no child in Utah with our insurance that has a bed. Because if Jax doesn't qualify, nobody will. It just makes me crazy to think that doctors are deliberately denying things they know people need. How heartless can these people be?
Instead of panicking, and thinking I'm about to enter into another battle for something my son needs and deserves, moving takes care of this problem. The bed wouldn't come anyway before we moved, so we'll start the process of getting a bed all over again with our new insurance. Plus I'm 99% sure that Jax will get the waiver in California, so getting the bed between the two should be no problem.
Now on to the great things that happened. I called a couple of our insurance options to see what was going to be the best fit for Jax. I already knew I didn't want Kaiser, I've heard bad things, and I want a PPO not an HMO, so I can take Jax out of network if need be. I called Empire bc/bs, where we have a couple different plans to choose from. The man was extremely nice, and we talked for nearly an hour. We picked the plan that will work for Jax, and he actually looked up the two doctors I have already picked for Jax. One is his cardiologist at Childrens Hospital Los Angeles, the other, his neuro, at the great UCLA. Both doctors are in network!!! Also, every childrens hospital is also in network!!!
I think this is the first time in my life that I've had a good experience with an insurance company. Of course we haven't had to have stuff covered by them yet, but this is a great start. He did tell me that if he was admitted, that they would have to call the insurance to get it approved. I didn't like that idea, because here, if it has to be pre-approved, its usually because they'll deny it! But he assured me it was just standard, and that all PPO's do that. Its just a technical thing, a quick phone call to let them know. I'm just used to the same insurance we've had for 13 years. It's an HMO, and the only childrens hospital we have is in network. So another question to all of you. Is it true, do you have to have admits approved with your insurance?

Catching flies!

Advice please!!

My friends, I need your advice! If you read my blog, but never comment, now is the time! (If you have great advice, that is ;)
As we are getting to the point where we need to be in Cali, because school will be starting before we know it. I still go back and forth on what to do with our house here in Utah.

I'm working my buns off this week, to have it ready to list. I know, I know, I should have had it up months ago, but its not that easy! Being here alone with 5 kids, baseball every Saturday, pretty much all day, doesn't leave much time!
We have been looking at rentals in Cali, because we will have to rent at least for a bit, until our house sells.
Here's where I need advice. I was thinking recently that we may not want to buy quite yet in Corona. Rays job that he transferred with, was just to get us out there. Its not his career, its a job. Again, I know, we are a little old to not have a career yet, but that's a whole other post, including daddy trying to go through college the last five years since Jax, nearly being impossible! Anyway, when he finishes school, or gets his permits, what if he gets a job in another city, and we have to turn around and sell again? If we sold our house, we would just keep the money in the bank until we were ready to buy.
Then I wonder, should we rent our house here for a bit? I hear housing prices will probably still drop for a while, so is it a good idea to let our house drop more before selling? The rent we would get from this house would almost pay our rent in Cali, but since the house isn't sold, we'd still have our house payment here, which is small, because its just a home equity loan.
I just worry that if we put our house up, and it takes a while to sell, we would soon not be able to afford both the rent in Cali, and the house payment here. Although I'm also hearing here in Utah, if you price your house right, it will sell fast, which we can do.
So what do you think? Just sell the house, or rent it out for a while?
Please, I go back and forth on what to do! My brain is going to explode!

And since we've been gone for a while, and I know you are joansing for you cute kid pics, here is my tornado in action. And since we are home, regular posting with cute pics will resume!

Seriously, this girl is a real live tornado! She doesn't sit still for 5 seconds! I guess that's a typical, almost 2 year old, right!
See that big yellow bottle of baby soap? She emptied the WHOLE thing in the bathtub!

Uh, this much soap is starting to burn my eyes.....

And make lots of bubbles. HELP!!

You may remember me posting that Jax won an ipad a while back. Instead of getting into details right now until the truth is uncovered, im going to direct you to my dear friend Heathers blog so you can see what we are doing about this! I've been talking with Heather about this from the get go, hold on tight my friends!

And since im still posting from my phone until tomorrow, if the link doesnt come up, go to Little Wonders on my list of blog friends!

Reality of a fragile child!

Man we've been in Cali for a week and a half, and barely taken 50 pictures! Thats so not like us, we are the kings of pictures. Even at dinner with friends, the camera sat in the car.

Its been an interesting trip to say the least. I've had a major realization while here. A realization of life with a fragile child.

Now we've had Jax for 5 years, you'd think we'd have figured it all out. But I'm telling you, it hit me smack in the face big time this week.

First thing, in our hasty depart from Utah, I forgot to grab Jax lovenox out of the fridge. The one med he can't go without! I called my ped at home when we got here, and she gladly called a perscription to the local pharmacy. Turns out local pharmacies don't have childrens doses of lovenox. Of course! So my ped called it into CHOC, the closest childrens hospital. When I went to pick it up, he'd already missed 3 doses. If he doesn't get his lovenox, his blood clots like crazy! Of course the outpatient pharmacy does not take my out of state insurance, and this lovenox is 250.00!!!

Now, what I should have done is walked out the door right then, and walked into the ER, because inpatient has to take all insurances. But I did what most moms do... I panicked! He has to have this med, and he has to have it now! So I paid 250.00, and then sat in my car and cried!

At Disneyland, as I was holding Jax and getting into the boat on Pirates of the Caribean, I slipped on the wet boat, and fell on my butt! With Jax and his oxygen in my hands! Luckily I was almost sitting anyway, so I didn't fall far. And I held on to Jax tight, so I didn't drop him, but I have a nice bruise on my behind, and I'm super sore. So then I was thinking....what happens when Jax gets too big to put on our laps for rides? I can't sit him next to me and hold him up, because he has no head control along with his lack of trunk control. Does Disneyland become something that we can't enjoy with him anymore? That would make us all crazy, since its a big thing we do as a family!

When I called the California company we use to get oxygen tanks while here, they informed me that my insurance wouldn't pay for the tanks, because we'd already taken a trip this year. So this must be another new change to my insurance, because usually we get two trips, and we've never been denied tanks before. So I shelled out another 75 bucks for oxygen tanks I had to have.

I guess the good thing is, I'm feeling more like this move is something we need to do. My insurance is getting pickier and pickier, and paying for less stuff. Here in Cali he will finally get the waiver he deserves, and we'll get some help with our million dollar child. Along with the new specialists I can't wait to take Jax too. The only reason I don't want to leave is my ped. It makes my heart hurt just to think about leaving her. We've been to hell and back together, and we are super close!

Lastly, the 4th of July. We went to our cousins house. His back yard goes up a steep hill, where at the top, you can see all of Simi Valley. So beautiful! Every year everyone hikes up the hill to watch the fireworks. I lugged Jax, and his oxygen tank, up that steep hill. My cousin walked behind me, just in case I slipped with him. But when he gets older, there's no way we'll get him up that hill! Even getting him in that back yard, with a big pool, in a wheelchair, will be difficult. Its reality of Jax getting older, and becoming a true "wheelchair" family that scares the crap out of me!

Don't get me wrong, I don't care about what other people think of the wheelchair...its all the things we won't be able to do. Oh, its giving me a headache again... time for some pictures!

Pilots Tanner and Mondo!

The Little Mermaid ride. Soo cute!!

Do teenagers ever smile for the camera??

Silly princess!

Ooohh my Carter!

My sweet Tanner!

Other interesting stuff going on in our blog world. Im not going to get into it quite yet, but let me tell you...its nasty stuff!!!!

We're still here!
We found a few cute houses for rent that i need to call on tomorrow. Denise took us around, and showed us a cute elementary school that i would like the boys to go to. We are trying to decide now if we should even buy a house in Corona, since the transfer with his company was just to get us out here. Hopefully once here he can get on with a Sheriffs department. So we dont want to buy a house if he gets a job in another city and we have to turn around and sell again. I'm planning a big post soon, as soon as i can sit down with my computer. We are probably heading back to Utah Friday.
Happy 4th to everyone!