Wednesday, February 27, 2013

Chance encounters!

Today started out in utter chaos! The boys were dragging their feet getting ready for school, and missed their bus. Then Arina pooped in the tub, as I'm trying to quickly get her bathed and on her bus, so I could get Jax to a doctors appointment. I was running nonstop! The icing on the cake was when I opened up the back of my car at the doctors office and noticed someone had taken the base of his wheelchair out!

Oh crap!
I was debating on if I should just blow off the doctors appointment (which I knew I couldn't) or go bang my head against a tree a few times! But after a few cuss words  I packed up the suction, oxygen, feeding pump, diaper bag, and a dead weight 7 year old in my two hands and made it in alive!
As I was waiting, a lady walked out with a stroller containing a tiny newborn. She asked if Jax had "Downs". I said he did, and she talked to him for a few minutes. Then the receptionist gave the mom a lab slip for the baby, and I heard the mom ask if the labs were "downs" labs. Of course my ears perked right up! I chimed in that the thyroid she mentioned was a basic DS lab, and asked if it was for the baby. She said yes, that the baby had mosaic DS. I peeked at the perfect baby boy in the stroller. Her chipper attitude quickly changed. She said that they were confused, and were going to the geneticist next week. Then as she was going out the door she said, "it is what it is, thats life!"

Now if I had Jax wheelchair, I would have bolted out the door after this lady! I actually used to have little cards with my info on them for such situations. Of course I didn't have any today. And with Jax in my arms and his equipment on the chair, I was no way able to run after this lady. I wrote all of my info on a piece of paper and asked the receptionist to PLEASE make sure this momma got it! I'm going to be perfectly honest. Seeing Jax may not be what this mom needs right now. Ya he's gorgeous and perfect, but on first glance, he's very scary! I'm sure seeing this 7 year old that couldn't even sit up, with all of his equipment, probably made this mom even more crazy!
I know she was feeling scared, she was probably mourning the loss of her "perfect" baby. I wanted her to know that she's not alone, and that its not the end of the world!

I have thousands of friends, around the world, that have been in her shoes! I want to share my resources, and my knowledge with her! I can only hope that this receptionist gets the info to this momma.
Because sometimes hope is all we have!
And I want this momma to have hope!

Tuesday, February 19, 2013

A new princess

There is a new princess at Disney! Her name is Arina! She is quickly becoming the new princess at Disneyland. On valentines day we were there, waiting for the parade to start. We saw Belle and the Beast walking, so we followed them. We came upon the princesses an their Beau's! Ariel and Eric, Jasmine and Aladdin, and of course Belle and the Beast. I was pointing Ariel out to Arina when Belle walked up to us.
It was obvious that she recognized Arina. She said, walk with me, and took her hand. She said to her, lets go find Ariel. She remembered that Arina LOVES Ariel! Soon the three princesses were hanging out like old friends! Watching the ducks in the pond, seeing who can twirl their dress the highest, and just having some princess talk! I guess Arina should start wearing her dresses to Disneyland instead of her street clothes! ;)

Saturday, February 16, 2013

Post procedure

Jax had his scopes Thursday. He did fabulous, when I went back to post op he was wide awake. I don't think anesthesia effects him the same anymore because he's had it so much!
The result was not news I wanted. The scope said everything looked good! This is bad news because I wanted the scope to confirm what I've been saying. Even though he vomits every day his esophagus actually looked better than it did during his last scope! How is that possible? The nissen also looks intact, although he vomits freely through it like its not even there! But because it looks ok they aren't going to touch it. It's extremely frustrating listening for your son to vomit, and hope you catch it before he aspirates! Since I'm not getting any help, I'm thinking of ways I can help on my own! A cuffed trach may help prevent aspirations. I'm not sure if the doc wants him on zofran as a daily med. we don't want him to get used to it and than have it stop working! His GI keeps saying the vomiting may be neurological. If she says it again I'm going to lose it!
At our follow up appointment next week we are going to discuss a separate J tube. Both GI and the surgeon think its a good idea. While I was against it at first, the idea is growing on me. No more worrying about if the tube comes out having to replace it with radiology. We know he will always need the J, so lets get rid of the more complicated tube. Although the idea of another hole in my babies tummy, another tube for him to pull, is not ideal, we have to weigh the good against the bad! I can look at every tiny scar on his body and tell you exactly what it's from. Every chest tube, every picc line, every incision.The battle scars just confirm that my sweet Jax is the most amazing warrior ever!!

Wednesday, February 13, 2013

Surgery tomorrow

Tomorrow bright and early Jax is having his scopes and biopsies. Plans almost changed a bit, I asked her if she could change his GJ while she was in there. But she doesn't do that, and the hospital doesn't carry the tube in stock, it would have to be ordered in. So her and the surgeon will take a close look at Jax esophagus and intestines. There is a possibility that it will turn into a nissen or a separate J tube. There is so much up in the air going in that its making me a bit nuts!
I just hope these tests show what I already know. Sometimes doctors depend so much on their technology that they miss what's right in front of them! GI told me on the phone today that she wonders if the vomiting is neuro related! Come on, didn't we go through this already? I've been doing this for seven years now. Jax has NEVER vomiting unless his reflux is out of control! We restarted the diet, the seizures got better, and he is still vomiting the same as he has since he blew the nissen!
I will be updating how everything is going on Jax Facebook page,

Wednesday, February 6, 2013

Q & A

Q. Do you think the fact she came from Russia is making it hard for her to speak English? I have no idea; maybe the orphanage she was in spoke English as the primary language or another language. If that's the case, I know that English is the hardest language to learn; perhaps it's a language barrier and she's still trying to learn? 
That a great question. I don't really think its the language. She was only 13 months when we brought her home. For the last 3 years she has only heard English. It was basically when she was a baby that she was spoken to in Russian. So no, I don't believe that is why she is struggling. 

Q. attach a bag to his g tube so it can vent and let the bile out whist feeding through the j. might not work but worth a try?
We are on the same thinking because that is indeed what we do when he is sleeping! His tummy has to vent or he will gag and vomit like nobodys business with all of that air being pushed in. I also keep his g tube extension on so that if he gags I can quickly open it up and let the pressure out!

Q. What is Jax Facebook page again?

Comments we love!

"Wow. That hurt me when I read it. Yes, it was a teachable moment but you shouldn't have to live your life around those while out with your sweet son. Your focus is obviously on all of his other special needs that are not being addressed at the moment. Like finding a caring qualified doctor who will listen and do what is in Jax best interest not what is in the interest of the doctor. You as a mom should not have to fight so darn hard for for child but I'm so glad he has you because apparently in this world people can't seem to do the right things so fighting is a necessary evil. He knows you will never give up on him. You love him dearly and that's very apparent. If only the rest of the world could see and understand that. Maybe it would be one less thing to worry about. One can only hope. Sending warm wishes to your family for the holidays!!"

"I'm a first year pediatric resident and I have been reading your blog for over a year.. I love hearing updates on your warrior boy! You guys are an awesome family and you are such a great mom! I had a patient the other day who reminded me so so much of Jax- and from reading your blog I took extra time- not focusing only on the medical stuff, but also on his sweet freckles and his love of (no other than...) Mickey Mouse! Thank you for sharing your story!"

Saturday, February 2, 2013

Everyday experiences!

Jaxson has been super super junky! I could tell it wasn't a respiratory virus like RSV or HMV. He wasn't sick, just junky. We have yet another new ped, who we've only seen twice, but she has been fantastic! She hasn't had a lot of complicated kids, and that's actually ok. She listens to me, and she loves having to push her skills as a doctor to take care of Jax. I told her that when he gets junky like this with no respiratory symptoms, it's always pseudomonas. We got a trach aspirate, and waited. It indeed grew out oodles of pseudomonas and also group A strep. The ped wanted to call our old doc, instead of just guessing the best antibiotic to give. (Another big point for her!) they decided Toby nebs and keflex for the group A strep. When I heard the name Toby I just cringed! This is a 6,000 dollar medication. It's one of the most ridiculously overpriced medications that I've ever had to deal with. Of course our insurance won't just cover it, we have to call a 1-800 number and do the whole pre approval crap. This whole time he's not getting the antibiotic. It's unbelievably frustrating to not get a medication your son needs! Even when it's approved it's a 200 dollar copay! Now Jax finally has a secondary insurance. But this insurance said they wouldn't cover it either! I can't even call to find out why because they are closed until Monday! I can't even stress to people who don't go through it just how frustrating it is that I have to fight for things my child needs to survive! Two insurances and no medications until some time next week, and even then I don't know how much will be covered!
By the grace of God I have some Toby left over and it doesn't expire until 2014. Having this little bit is what's keeping me from a complete breakdown! Keeping me remembering why I fight with everyone. Because a gorgeous little boy is depending on me! And I can't let him down!
I needed to relieve some stress and so we headed to the happiest place on earth. Because I always forget everyday problems being there with my babies!

And then that night the boys wanted to have a sleepover with Jax. After moving equipment around we got Jax on the floor with his brothers. It's these things in life that make me love being a mom, and build up my energy for the next battle to come!