Merry Christmas!

Merry Christmas to all of our friends and followers! 

We are just thankful our munchkin is home and doing good. That's all we ever want! 

We love you all!

Jaxsons bucket list!

Jax is keeping us on our toes, which is why I haven't posted in so long. We went to Utah for thanksgiving. A quick trip because daddy has no time off so we couldn't come down for Christmas. I got horribly sick with the flu. Jax wasn't really sick, but he kept having these weird airway episodes. It sounded like stridor. I changed his trach multiple times, and it wasn't that. It was like his airway was collapsing. We decided to just hurry home so we could get Jax to his doctors. 

In cedar city we stopped to pick something up from Rays aunt. While we were stopped Jax turned blue and dropped his sats into the 50's! I popped him on his vent and he did better. But I didn't have the battery power to get all the way home. We stopped in St. George to eat. I told Ray that I wasn't comfortable driving the rest of the way home with him. We had decided to stop at their hospital and see how they could help us. On our way to the car he did it again! This time he was on the vent already! I told Ray just to call 911!

They took us to Dixie where he continued to have desats and they had to bag him. They called life flight and he was flown back to salt lake to PCMC. 

We figured jax just wanted to cross off flying in a Life Flight airplane off his bucket list! We had to turn around and drive back up to salt lake. And this is where we've been since! Jax did test positive for the flu, and he also has the same blood infection he did last month. All of his lines had to come out, including the beloved port. Since then we've been waiting for negative cultures so we could put a new line in and go home. They won't transfer him because there is nothing CHOC has that PCMC doesn't, so they won't approve it! We were hoping today would be the day. But his cultures once again flipped positive! He also has a fever this morning. ID is worried the bug is colonized somewhere in his body, like his heart. Ray and the boys headed home today. They need to get back to school and work. Ray already won't get paid for last week, which is really stinky right before Christmas! Honestly I'm not even sure if our Christmas tree will get up! Me and Arina are still in Utah with Jax. They will drive up next weekend to pick us up. We are staying at my moms house, which is nice. But it still sucks! We just need to think negative so we can get out of the hospital and hopefully be together as a family for more than a week at a time!!

Tips for disneys new DAS

I've been wanting to write this post for a while. But I really wanted to use the DAS multiple times before posting about it! I want people to know that it's totally doable, and give some tips on how to make the most of your trip!

Let me first say that this is for Disneyland, resort, and Disney world will be a bit different!

First off you go to city hall, same as with the GAC. Here's your first tip...city hall can have a long line if its a busy day. If your visiting both parks. Get your DAS at California Adventure. The line at their city hall tends to be much shorter! They have extra staff at city hall to try and make it go faster. They use iPads for the DAS and we've even gotten our pass while standing in line! They will also want to see everyone in your party, so keep everyone close! This eliminates people getting the max people in and bringing more friends or letting other people come with them!

Ok, if all you need for your child is the ability to leave them in their stroller in line, then they will simply put a red tag on the stroller, showing its to be used as a wheelchair. This is what they already did in Disney world. Just so you know if you only tag your stroller, you still have to wait in lines that are handicap accessible, which is most rides in DCA (Disney California adventure)

If your child has sensory issues, and can't stand in long lines, then you can get the DAS. (You can also tag your stroller along with the DAS) They will take your child's picture for the card. On the back is spots for them to give you times for each ride. One big misconception I have to explain is....you don't have to go directly to each ride for a come back time! People keep saying, we go to the ride and my child doesn't understand that we have to leave and come back. No, that's not how it works! There are kiosks set up around the park, and they will give you a paper telling you where the kiosks are. Any kiosk can give you a time for any ride! City hall is also a kiosk. Before you leave city hall they can give you your first come back time. They take the wait time for the ride, and subtract 10 minutes. We've only had one wait time over 30 minutes, and that was Small world at christmas time! Usually by the time I walk to the ride, it's our come back time! Use this along with fastpass for rides that have it. Don't get a come back time for a ride that has fastpass. You can use both at the same time! For rides that the line is shorter than 10 minutes, you don't even need a come back time, just go through the typical handicap line or exit. It's better to plan your day, which is smart anyway for a busy park! Get come back times for rides that tend to have long lines! Most of the rides in fantasyland, with the exception of small world and Peter Pan, you can just go through the exit like normal, no need for a come back time!

I'm still seeing people abuse the pass, but not nearly as much. The best part, the lines in the handicap line are much much smaller! Remember the line at pirates of the Caribbean? How bad it could get? No more! We still have to wait longer on some rides to get a handicap vehicle. That's if your child stays in their wheelchair. This time of year Haunted mansion and small world are busier for wheelchair bound people! 

My biggest advice....be polite! If you walk in to Disneyland with an already bad attitude, not only is the staff going to be annoyed, but your already ruining your own day! Always remember life is what you make it! The staff is more than willing to help, as long as your polite to them as well! If you happen to get a really rude cast member, take down their name, Disney does not tolerate that in their cast members!

Also if for some reason the pass is simply not working, go back to city hall and let them know, they will help you! Again, if its not working and you go back to city hall for help, BE POLITE! Even if your frustrated that its not working, screaming at the staff is not going to help anyone!

And lastly, give it a day or two to really get the hang of it. Don't say after a couple hours it's not working. Even I, as someone who was telling people to just try it, was frustrated on the first day! I was already having a bad day, Jax J tube was leaking like crazy, and our suction was not working. Add in a new system and I was totally overwhelmed! But its a breeze now, and now that the staff is used to it, the kinks are working themselves out, and things are running very smoothly! If someone tried it during the first few weeks it was out, and they are saying its a disaster, they haven't given it enough time! It's really not that hard, and I don't feel like its any worse than the previous system, and now you have the added bonus of much shorter handicap lines and less abuse!

If you have any more questions or I left something out, leave a comment and I'll answer it!

You know that we'd go to Disney even without a special pass! It's still a place that Jax can be like everyone else! It's a magical place that makes us all feel special, and the way the staff treats our littles will keep us going back forever! After all, Arina is the Disneyland princess! Just ask the cast members!

Home again!

Munchkin is home again! Tomorrow will be day three home and we are still a bit on edge as that's the max days he's been home in a month! 

His port was positive for enterococcus, and to save the port from being pulled, he is on 24/7 IV antibiotics through it. They were concerned about endocarditis because I guess this particular bug is prone to causing it. He had an echo, and then a trans esophageal echo and luckily both were negative! 

The bad news is the tpn and antibiotic are not compatible, so we had to have another line placed for his tpn. So he's currently at home with two lines, running two different meds. Needless to say he's a lot of work right now! The tpn runs for 16 hours, then we run 8 hours of IV fluid in between. That runs through a popliteal line behind his knee. The antibiotic runs 24/7 through his port. The good news is we do think that the J tube site will close on its own. Nothing is leaking from there anymore, and the surgeon is giving it two more weeks to completely close, and then we'll start feeds again! 

All I care about is that my baby boy is home where he belongs! We can do anything he needs to keep him here!!

Third times a charm, I hope!

Jax had three days home this time! 

3 whole days!

Jax has a blood infection! Blah!

Cultures from his port are positive. Today they drew peripheral cultures, and we may be getting an echo to check for endocarditis. The fact that he continues to spike fevers, well they don't like that at all! 

We need the cultures to come back negative and this infection to get under control so we don't lose the port! That would be bad!

 This is the third stay this month, we're just hoping third time is a charm and we can enjoy the holidays at home!

Home in time for Halloween!

Jax was discharged Wednesday, just in time for Halloween! 

He is still on tpn and lipids, hoping his j tube will close on its own. It's still leaking, and I think if it hasn't closed by now it's not going to! 

His skin is totally healed around the site, and they are using an ostomy bag to keep track of how much drainage comes out. Thank goodness we got the port placed when we did, because putting a central line in is impossible, which is why we did it to begin with. See mommy really does know best!

I'm just glad we got to take him out in his costume! And next time we hit Disney its going with us as we'll, since our Disney friends missed it at the Halloween party! 

We hope to get some better pics today with the good camera, but they looked adorable and were the talk of the school!

Still here!

This is the longest hospital stay since we move to California two years ago! 

I think, how in the world did I do weeks, even months in the hospital? 

Truth is, I don't know how we ever survived that long inpatient, and still have a life with other children! 

For most things they say it get easier with time, for hospital stays, I think it gets harder with time!

Tomorrow will be day 10 of this stay. But if you count the last stay and the days inthe  ER, which was every day we were not inpatient. We are going on three weeks at CHOC!! And I still don't have a discharge date or see an end in sight! Tomorrow I'm taking up the Halloween lights we bought for his wheelchair, and instead will hang them in his hospital crib. His costume specially made for him will be worn in a hospital room. It seems like everything for Jax happens in a hospital room! 

And it sucks!!

But we just keep in keeping on!

That didnt last long!!

The day after our last post we were back in the ER! The tube the doc put in came out, balloon and all! Like I've said a million time in the last week, the tube is toast! We've stretched it all out trying to get something to work! Nothing will work but surgically closing it! 

Let the drama continue!

Friday night was when the tube came out and I couldn't get it to stay in, so we hit the ER. This time the surgeon did come down and look at it, but he put the same tube in that we started with in the very beginning of all this! He upped he size again, so we've gone from a 12 to an 18 in a couple weeks. He also put 5 mls of fluid in the balloon, which I was told was not safe for a tube that is on the intestine, not the stomach. Again we were sent home. By the time we got home at 3am he had leaked through his shirt. I dressed it up good and went to bed. At 7am it had leaked completely drenching his bed! I don't think he got an ounce of fluid that night! 

At this point I'm beyond livid. I don't know what to do! I was deciding if I should take him to a different hospital. I called his peds office, and the doc on call was also livid, and she started calling around to find out whose responsible for this problem! She called me back a couple hours later exasperated! She really didnt get anywhere either. The surgeon, same one from the ER, said to come back there! So at that point we had to make a decision. Take him back once more or go to a different hospital. We weighed the options and pros and cons. The ped had told the ER staff and also surgery that we were beyond upset. We decided to go one more time and raise holy hell if needed! 

From the second we got there the front staff knew who we were and that we were pissed. We got back quickly and they had already made plans to admit him. So we went back to our PICU home, feeds were stopped and more wound care was set up. I think they are finally seeing that this tube needs to go. The surgeon that came in said she hated J tubes for this very reason. She agrees that it needs to come out, but which way to take it out is the question. No one wants to touch Jax with a ten foot pole. They all want to wait until his surgeon comes back and let him handle it! 

So where we stand at this moment is we've been admitted since Saturday, on tpn and lipids, had 3 ER visits and 2 admits in two weeks. Tomorrow finally Jax surgeon is back, and some kind if surgery will happen, exactly what, I don't know!

I'm super super upset right now because our Disney Halloween party is tomorrow night. Jax costume was specially made for him, and he matches Arina. Our Disney friends have been dying to see them, and there's no way Jax will make it! So so so upset right now! Arina won't be near as cute without her match!

Bleh, this stinks!!!

Back to the big house!

Our week has been a bit crazy!

If you follow us on Facebook you've probably seen our problems with Jax J tube leaking. We've tried every tube brand, size, and depth! One may work for a while, and then the leaking starts again! 

Of course his poor skin around the site was a mess! We had many people say to try this and that, and yes, we tried everything! But no amount of wound care will help if the problem isn't taken care of! I've been begging for help from docs for weeks. GI says its surgeries problem. Surgery shortens the tube but it doesn't help, so she says she doesn't know what else to do! Last Friday I called GI in desperation! Please please help! They got him in to see her Monday afternoon. Monday morning he was vomiting, and bleeding from the site because it had gotten so bad! Her office told us just to go to the ER. That ended up being a big mistake! The ER called surgery. Of course the same doc said the same thing, I don't know what else to do but surgically close it! Of course unfortunate timing, Jax real surgeon that placed the tube has been out for weeks, because his dear wife passed away. I feel so bad for him, he's such a sweet guy, and I know if he'd been there he would have had a great solution! So then the ER doc calls GI, who never even lays eyes on Jax. He said to set us up with a wound care plan and send us home! I was beyond livid and attempted to call our GI, who is amazing! Her staff would not let me talk to her, but got us an appointment for the very next day at 10! So after I talked to quality management about how our situation could have been better handled, we left! Id rather his real GI make decisions rather than a GI on call that thought wound care would solve the problem of the tube leaking! 

The next day GI gave me her cell number after she realized I was not able to get a hold of her, and she sent us right back to the hospital to be admitted! At least this time it was a direct admit and we were able to bypass the ER! 

By this time his tummy looked unbearable! They cultured it and it grew out multiple bugs, including a fungus. Two different IV meds were started, and debate about what to do with the tube finally happened!

Yet another surgeon came up, and tried yet another tube. One I despise! It's a straight Mickey tube, no button, and no clamp! He's had this kind before and it's awful! The only good part is for now it's not leaking, but like the other tubes, we'll see what happens in a couple days or weeks! I still believe we need a long term plan on what to do with this site! I hate to pull it and go back to a GJ, but we may have to if this continues.

Yesterday his antibiotics were switched to J tube and we were discharged! The PICU attending said there was paraflu on the unit and he wanted Jax out as soon as possible! Obviously we were happy to oblige!

Now we make a bunch of follow ups, one being his surgeon that missed all the drama! I hope between him and our GI we can get a good long term plan!!

Jax school saga!

If you remember we've had quite a rough time getting Jax the schooling he deserves. We finally had an IEP meeting a couple months ago. As of right now he is still doing home/hospital. We are working towards getting him in the classroom a couple days a week only for a couple hours. His stamina is very low, after only one hour with his teacher, he lets us know he's done! Then he usually passes out for a lengthy nap!
The paperwork to get him in the classroom is complicated. Basically all of his medical stuff has to be written out on paper and signed off by his doctor. He also has to have a nurse in class. Its taken me a while to find someone that I trust to be Jax only caregiver, with me not around! I think I finally found that someone! I want to make sure she's good and comfortable, and knows Jax different mannerism's before she goes to school with him. When he finally goes I will go the first day and just stand on the sidelines, letting the nurse do everything. I just want to make sure she, and his teacher know when he's telling them he's done, and what signs to look for!
Of course sending him to school won't be easy! Its never easy to let our kids go, but especially when the child depends on your for even the most basic needs. But it will be good for him, and he will benefit greatly!!

Right now his teacher comes out two days a week. She puts him in his chair and does activities with lights and music. She does a lot of stuff with his hands. For the first time he's doing school projects that every other kid does in school! The first time his teacher showed me a project I just cried! It will be something I will treasure forever!

Its so amazing what those little fingers can do! Even though he hates it, major sensory overload!

And by the end of the hour, he's letting us know he's done!

My baby is doing amazing things! Pretty soon I'll be posting him getting on a school bus! Man that will be a post you'll want to read with a box of tissues!

Moving along!

I seem to be going through a "tired of being a medical mommy" spell! I would love to go a month, even a week with no medical worries! I'm tired of doctors offices. Hospitals, Pharmacies and insurance companies! After opening a 4500 bill for ha IPV machine was when I lost it! I realized that a long as I have my beautiful boy, I'll never have good credit, I'll never be able to buy a house. We'll be throwing money away as long as we live this medical life. And it's just not fair! Our government is acting like two year olds all the while still getting a big salary while everyone else suffers! I'm not all that proud to be an American right now! 

Moving on, we have had a few things happening around here! Jax teacher brought out a tomato chair for him. I've been wanting to get him one for a while, but insurance won't pay for that and a wheelchair because they are both seating! Don't get me started!

He loves to sit up and Arina loves him being up so he can watch movies with her! She is such a great big-little sister! 

She had her 4 year check up and she trumps Jax in weight! A hefty 33lbs. Chunky monkey! We've started her back on Prevacid as she is still refluxing. She spits up on my floor and carpet constantly! She a cleaning companies dream come true! We are excited because she will stay in preschool with her amazing teacher for 2 more years. Since she'll be older I think she'll be able to transition into a regular kindergarten class!

Her hair is getting long again and we are trying some spunky hairdo's!

We're just lovin our babies and enjoying hot having a hospital stay in a while!

Where has my baby gone?

What has happened to my itty bitty baby girl?
She's turned into a big, beautiful 4 year old, that's what!

I'm still in awe of the fact that I'm able to raise this beautiful girl and call her my own. What a long, hard process it was to bring her home!
But I can't believe how big she's getting. Having a little girl has been everything I ever dreamed it would be! The bows, the princesses, the pink! Its all amazing!

These pictures from our last couple trips to Disney has made me realize how grown up she is! We've been taking her leash with us to Disneyland. Its much easier when she gets out of her stroller. But she wanted to stay out and walk with her cousin the other day. And guess what? She walked through the entire park! Without dropping, without pulling. She walked like a big girl!

Our princess is making some big strides in preschool! She gets two more years here with the same teacher because she just misses the deadline. I love that because she really does well with this teacher, and I think when its time to go to kindergarten, she'll be ready!
(warning: mommy talk coming!)
She's also getting closer to potty training! She's pooped in the potty a couple times, which is usually the hardest part! Still working on her telling us she needs to go, but its progress!

I love love love my baby girl so much! I can't wait to see our future. Shopping together and talking about boys!
Ah I love little girls!

(by the way, I have no idea why my computer won't let me make my last three pictures bigger! Let me just say that windows 8 makes me want to throw my computer through a brick wall! )

The great Disney freak out!

It was the blog heard round the disabled communities world!

Disney is getting rid of their guest assistance pass!

Gasp!!

One person saw the article, blogged about it. Word spread, people flipped out, petitions started and passed around! Before we even know the truth, and what's really happening! It amazes me how quickly people sign petitions without doing research! Kinda scary!

I know I'm going to be the minority, but also the calm person (that didnt flip when they heard this) and a Disney expert!

I was at Disneyland last week, renewing Jax pass when I heard a cast member tell a lady that they were going to be changing their GAP! 

"Oh really?" I was super excited to hear that! Everyone has heard the news stories about the rich people hiring disabled people. But you must understand that it goes much farther than that! The abuse is beyond crazy right now! A lot of the handicap lines are getting longer than the typical lines! I see this on a weekly basis, because that's how often we are at the park! 

Here are the big problems. Disney can NOT ask for proof of disability. This would by far be the easiest way to weed out the abusers. But the ADA says they can't do that! I'm all for bringing in proof of Jax disability! But disabled people screamed that they shouldn't have to show proof, now they are screaming because something has to change because of abuse! 

The other big myth..Disney NEVER offered a "front of the line" pass. Someone called it that, spread the word, and you know where it went from there! Where we are now! They have a pass that will make your stroller like a wheelchair. They also have an alternative entrance, away from the crowds of people. But no pass will jump you to the front. None! 

Disney is not doing away with their disability program, their just changing it. Now I don't know the entire change. I'm not going based off what some website says! I have a few Disney friends, and I'm trying to get true info. Most don't know yet because they haven't started training. But people think they will now have to wait in line. That is not true, you still go to the same entrance you went to before. 

Do I think this new system is ideal? Not at all! I also don't think it will deter abusers. They will simply follow the new system and continue to abuse. 

But Disney is stuck between a rock and a hard place! They need a change, but the easiest way to fix the problem, by law, they cannot do! I can only hope that they can come up with a good way for us to enjoy the park, and keep the idiots from abusing! But I'm not sure if there is such a plan! 

So before we all flip a lid, lets find out what the new system entails! Let me try it out and I'll let everyone know how it is! 

Remember, I have three special needs kidos! I should be totally flipping out with this news. But life with Jax has never been easy! It's not easy at Disney either! Most times we have to wait longer, to wait for a special vehicle. Transferring Jax to a ride with no handicap vehicle is a workout! Disconnecting tubes and carrying his extras with us. We need extra time to get on. The Haunted mansion this time of year is a nightmare for us! Only so many wheelchairs can be in the ride at one time, so often we have to wait more than double the time everyone else waits. I have a little girl that is not only a runner, but a bolter! But Disney is still a magical place for us! It frustrates me so much when these parents flip out, thinking their entitled to bypass everyone waiting in line and step right in. It just doesn't work that way! 

Disney tries their hardest to make the lines as short as possible for us with kids that have sensory issues and body temperature problems! 

I think Disney is trying their best, and I for one am willing to wait and give the new system a try! I have a friend deep in Disney and that person is always asking for our feedback on what works and what doesn't. And you better believe if the new system doesn't work, we'll be sure to let them know!

The night that made us cry!

Saturday night we were at Disneyland. We were eating at Naples pizza in downtown Disney. Me, Ray, Carter and the two littles.
Eating dinner out with Jax is not always fun. People think that suctioning him is gross. We try to turn him away from people, or pull his canopy down when we suction him. I always suction him good before we go in hoping that he will be good during dinner.

There was an older couple sitting across from Ray. They had an adult daughter with them. I did notice them glance over a few times while we were eating. I always just assume they are staring at Jax or disgusted by the suctioning.
Unfortunately its just something that we've gotten used to, its our life with Jax.
Our waitress wasn't that great, and while we sat and waited for her to bring our check, Arina was getting antsy! So I took her out and got her settled in her stroller.
A few minutes later Ray walked out with tears in his eyes. He told me that the couple sitting across from him had paid for our dinner! They left before we did, so we couldn't thank them. It was just an anonymous act of kindness.

I'll admit that I've become hardened a bit in my years with Jax. The acts of kindness are few and far between the nasty comments and hardened stares. But they are also so amazing that it softens my heart and gets me through to the next act of kindness or sweet comment I get.

When people say children like Jax are just a burden on us, that we'll be caring for them our entire lives and they won't contribute to society, it makes me angry.

Don't you see? Don't you see the way they contribute?

They bring out the best in people. They make them stop and remember how lucky they are. Their infectious smiles can brighten anyone's bad day.

And I think that's what we need a lot more of in this world. Smiles, and acts of kindness!

So take this story and remember to pay it forward. I know we will!!