Tuesday, June 9, 2009

One-on-One time

Things at home are pretty normal. Brady is refusing to be in his crib and seems content sleeping in the bouncy seat for some reason. I was starting to wonder if he had an ear infection with all the crying he does in his crib, but he's flat on his back while playing and seems fine. The boys like to laugh at each other now. There's nothing cuter in the world. They enjoy being in the yard as we work on our sad landscaping. I'm thinking of getting a "nursery tent". The kind that allows air to flow thru and you can see in so the boys can play inside out of the sun and away from the mosquito's (so bad by us). Any suggestions out there?
This past weekend, Jason and I each had our own baby for awhile. Jay took Brady to watch a softball game Saturday, and then took Jax on Sunday. It's so amazing to have just ONE baby! I got to shower and do laundry, clean up the house and even go to lunch with a friend! It was nice to sit and hold a baby on my lap. I never do that! They are both on the floor or in a high chair or in a toy contraption or something. I never get to sit and just hold one. It's nice to do that once in awhile; have some one-on-one time with a baby and really appreciate them with your full attention.
Jaxon has a third tooth and they seem to be coming in fast for him. We were able to get Jaxon's urine and stool samples sent out this past weekend (labs for the holistic facility) but unable to get his blood drawn. The lab tried four times and said all his veins were blown...poor Jax. So we started him on his antibiotic in hopes of some relief. It's the fourth day and while he's sleeping better at night now, he is in a lot of pain and vomiting around 4am. Hopefully this antibiotic (Augmentin) will give him more relief as we finish it out. And even MORE hopefully, we'll get his blood work done once he's done with this antibiotic and then the holistic facility will be able to give us some answers and solutions.
I can't imagine a life of downward slopes/hospitalizations countered with antibiotics for the rest of Jax's life...it just can't happen. Life is livable for us all right now, but it's still just not fair to Jax. He has between 10-12 violent vomiting episodes a day, and when he goes on a downward cycle, he vomits even more and has awful diarrhea. Our only solution is an antibiotic right now, or put him on total IV feeds. What an unforgiving disease this is.
So right now this is what he takes daily:

1.5 ml's Ferrous Sulfate (Iron)
7 ml's Prevacid (2x/day)
Zofran (as needed)
1.5 ml's Augmentin (3x/day)
Probiotic (given with spoon therapy and rest in Jtube)
Mylanta or Maalox (as needed - typically during his night-pain)
And of course his Neocate with Pedialyte on a continuous pump at 32 ml's/hr

I caught an episode of Mystery Diagnosis about a little boy with unexplained vomiting. They described his vomiting as "extreme and intense" because he vomited 7 times in a week. Turned out that his stomach was in his chest cavity and they didn't find out until he was 3 yrs old by doing a simple x-ray. He ended up being fine with an operation. I keep thinking that maybe someday someone will say, "Voila! I've got the solution!"...wouldn't that would be heaven? 

We're still waiting for the blood work orders thru our GI clinic (Children's Hosp) to test his thyroid and VIP levels. Through some of my research I found that hyperthyroidism (Grave's Disease) can cause Pseudo Obstruction, so the doc's are testing his thyroid and also want to check his VIP (Vasoactive Intestinal Polypeptide) levels for a possible tumor (pancreatic cancer - let's just ignore this test significance like the Mitochondrial test results we're still waiting for). 
So at least we have two different institutions still searching for a culprit to cure in hopes that this isn't primary and completely untreatable. I just hope we find a "treatable" primary. Still keeping the faith.


Abbey said...

I also saw that episode of Mystery Diagnosis and instantly thought of Jax. I don't know if you remember but we emailed back when Jax's diagnosis was simply bad reflux. Anyway, I'm a nestie. I read your blog often but don't usually comment. My question, has Jax ever been on Carafate? It is a stronger more intense version of Mylanta. My DS is on this for his reflux/vomitting and it seems to help more than just the Mylanta. I'm sure you've been through it all but I just thought I'd throw that out there if it can bring more comfort to sweet Jaxon.

Also, your boys are so freaking cute! I also check your blog just to see pics of their sweet faces!

Eris1995 said...

We recently got this tent:


We only used it once at the beach so far, but really liked it. It's compact when folded up and it has steaks that you can put in the ground.

If you get more things and spend more than a $100 use the code FREESHP for free shipping.

Laura said...

It is ironic you should mention watching Mystery Diagnosis because I was just thinking the other day that Jax's story would be perfect for that show one day when they figure this all out.
You guys are doing such a great job. I had also been thinking of doing a few one-on-one days for us too. My DH has not ever taken the boys anywhere by his slef yet so I think that should be the first hurdle.
Hope you guys get some down time for you and Jason somewhere. You need it every once in a while.
By the way, we aren't doing bolus feedings for the boys yet. They have not stopped vomiting, but they have stopped vomiting in their sleep at least for now. I want to wait about two weeks to make sure we're not having a good up cycle to be followed by a downward cycle of sleep vomiting as things seem to get better after adjusting the tubes and then a week later it all goes bad again.

Anonymous said...

I think Abbey is wright...

Get More Details