Tuesday, August 23, 2011

Whirlwind

Sometimes I wonder if talking about everything that is going on with Jaxson just comes out to most people as mumbo jumbo. But for those who care, or understand, and for me, here it goes!

We have a whirlwind of appointments this week and next. They all will be last appointments before changing to our Cali doctors. (To which I still don't have a ped, by the way!)
Yesterday Jax had an allergy appointment. I almost canceled it, because he can't do the breathing test the boys do. And he can't really lay on his stomach and get the allergy tests on his back. But I'm glad I didn't cancel, because my ped really wanted it, and it turned out to be really useful info. My ped wanted him checked for allergies to see if that is contributing to his angry, red airway. They condensed the tests down from 43 to 20, and did it on his thighs so he could stay in his stroller. They did all outdoor allergies, dogs, cats, and some foods that could be in his formula. He tested negative for every. single. one! It is so funny because my two boys that look like me don't have asthma or allergies. My two blondies like daddy also inherited his horrible asthma and are allergic to everything outside!
But now that we know allergies aren't an issue, she wants his nissen checked to see if its intact. Her other opinion was he is refluxing into his airway. I told her that in the last week, he's thrown up, and I've found formula in his throat when he gags. So she ordered me to switch to J feeds until we have the upper GI on Thursday. The scary thing is, even if his nissen is not intact, I'm not sure that his surgeon will fix it a third time. It would definitely have to be open, not laproscopic, so they can try to keep it from slipping again. And last time he had it done, they couldn't get a line so they ended up doing a cutdown femoral. It was horribly messy and bled like crazy! He is just running out of all access! I don't want to do J feeds forever. It makes the stomach shrink, and trying to get him to tolerate belly feeds again after long J feeds can be quite the process!
Thursday is also our last neuro before moving. They will turn up his VNS again, and we'll talk about how its working. I'm starting to think it, like everything else, is not working. I'm still seeing the same amount of seizures. And most of the time I swipe the magnet, it does nothing. I'm feeling a little defeated in the seizure area, we've tried everything there is to try, and I think we may just plain be out of options.

Next Monday in pulmo, I don't think we'll make any changes there. So far after upping his PEEP, his lungs are stable. Thats always nice to say.

The buyers do an inspection on our house Thursday. My agent told me it was today, and I got all the kids out by 8:30, then he said, whoops, its Thursday!
Needless to say he had one angry customer!
But in between a lot of appointments and therapies, we'll be packing. Never a dull moment around here!




12 comments:

Scrappy quilter said...

Awe, she sure loves her brother. Hoping the move goes without a hitch. Hugs

Dawn said...

I just wanted to comment on the VNS...something I know a lot about. My daughter has Trisomy 9p & Lennox-Gastaut seizure disorder. She's 22 years old now. We've been struggling with seizures her whole life.

Taylor got the VNS back in 2000. It didn't really work for us either and she ended up having a corpus callosotomy in 2003. However, that didn't get rid of all her seizures...just the drop ones. She still has 100+ a day.

We never used the magnet but when her battery died in 2008, we noticed an increase in her seizures. When they replaced the unit, we could see a decrease in the time her seizures lasted. All this time, I never thought it worked. We only noticed a difference when it stopped.

She still has a lot of seizures a day & we had some VNS replacement issues,(due only to where the inital unit was placed) but apparently is doing something.

The magnet is holding up her artwork on our refridgerator.

Good luck on your move. I'm sure you are ready to be done already.

Junior said...

those are such sweet pics. Praying that the move will go smoothly.

Shelly Turpin said...

Love the pics - glad the increased PEEP is helping. So sad about the seizures. Those make me so very, very sad.

The VW's said...

I was just complaining to my husband about the amount of appointments I have to go to lately with the boys! But, it sounds like you are in the same boat! Hope you can find some answers and good options for Jax at the appointments! That last picture is just precious!!!!

April said...

Good luck! Hope everything goes as smoothly as possible!

Runningmama said...

Keep on posting on Jax's health issues so we know how to pray for him :-) I love pics of Arina and Jax together!

Conrad, Megan and Our Precious Keaton said...

Hello dear Lacey, so happy its not allergies, my two have dairy and wheat and now soya! Wow they are growing up so beautifully! Love A hair!!! So long!!!! And our sweet Jax looks so smitten with his sister! Good luck with the packing! You are always tought of! God bless and much love, Megan

Monique said...

Cute outfits on them both :-) I love how the coordinate. Hope your move goes off quickly and smoothly.

Chromosomally Enhanced said...

love the pix...to sweet! I am excited for the BIG move...but I would be a little scared of the doctor changes for Jax...I bet you have it all down and ready to go! best of luck! we will be thinking of ya! smiles

Michelle said...

Hang in there, sister. I wish life was treating you a little more smoothly lately and Jax too for that matter. Hoping all goes well tomorrow and you are on to brighter days soon.

Erin said...

Arg those nissens. So much stress. I hate that a repeat would have to be open and I hate lack of veins! Both issues haunted me.