Phase One: Completed

Evan had his GJ surgery today and the procedure itself went well. That is except for two things. The first sedative they gave him can have varying effects on kids, from elation to looking stoned to panic terror screaming. Evan experienced the latter and I guess the sensation was so trippy for him that even when he looked at me he shrieked in terror.

And worst of all was the allergic reaction he had to the contrast IV dye solution they put in so they could see everything on xray while performing the GJ surgery. The anesthesia nurse told me they moved him from the radiology procedure table to the transport crib bed once they were done the procedure and she and another nurse both noticed he was turning bright red and getting really hot quickly. He had a temperature of 101.4 for about a half hour after in the PACU recovery room. They gave him Benadryl and Tylenol and he slowly returned to normal.

After he recovered and we'd returned to our room he had another flare up of the allergic reaction because the contrast dye has to process through the kidneys and out in his urine. The nurses reacted quickly with more Benadryl and we now have an Epi pen at bedside for the night nurse if we see any swelling, trouble breathing, or other complications. He periodically still wakes up screaming but we're not sure why this is. Maybe pain, though this procedure was supposed to be painless.

In speaking with the anesthesiologist, the two anesthesia nurses, and the PACU nurse (who is a former 15 year veteran NICU nurse as well), as well as our GI specialist this reaction is kind of uncommon and causes a type of histamine reaction to combat the contact causing allergen, just like you would react to a bee sting or peanuts. The lucky thing is that he did not go in to full anaphylactic shock or respiratory distress, though if exposed to this allergen again and any other subsequent future exposures the body's reaction will increase to fight the allergen as quickly as possible and he could go into shock or respiratory distress then. Additionally, they said that since he and his twin are so genetically similar, even though they are fraternal, Cameron will likely have the same or similar or worse reaction. For the rest of their lives we will need to make sure medical staff working on them know of this allergic reaction. They are going to get us a list of medications by name that have the same compounds as the contrast IV solution used today for our personal medical records for future reference.

Phase Two is Cameron's GJ surgery on Thursday. Now that we know that he's likely to have the same kind of reaction they are working with anesthesia to see if there is an alternate contrast dye solution we can use, and before the procedure we'll give him Benedryl and Tylenol. I just wonder if he'll have bad trip on the sedative like Evan or if he'll be a dopey ray of sunshine.

Phase Three: Profit - This is really how we figure out how to get them to eat like normal again.

One last update... I spoke with our head GI specialist and she consented to allowing the boys to eat birthday cake, as long as we made sure it was just a tiny taste. They can lick icing at least so I'm very relieved.

Edit Update: We had a rough night with one more flare up of the allergic reaction but it was not nearly as bad and it passed quickly. He's been having lots of screaming bouts but he's shaking his rattle (even in his sleep he does this, so cute) so I think he just doesn't manage pain well.

Edit Update 2: We just learned that there is at least one baby just a door or two down from us who has RSV. I don't know when they were admitted but my guys didn't get their RSV shot this month yet. They are waiting to give it to them post op and will watch for their reactions before discharging us. Not like we weren't being really careful about germ control but now I'm really paranoid and have run around the room with cleaning wipes.