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.