Sunday, October 27, 2013

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!

Tuesday, October 22, 2013

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!!!

Friday, October 18, 2013

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!!

Thursday, October 10, 2013

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!

Thursday, October 3, 2013

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!