hey! what’s goin’ on down there?!?!

The maintenance man was able to fix our heat last night, so we are still in the same room.  I thought it was broken again this morning, however, so they came back to check on it.  As it turns out, 62 degree air blows into the room right near Sophia’s crib and that somehow mixes with the 120 degree air generated by the heated ceiling tiles to reach the 72 degree temp for the room?  He seemed shocked that I wouldn’t understand this and would question the freezing air blowing into the room.  Guess we’re learning more than medical stuff on this journey.  


Sophia ate well all night, and the nice night nurse changed her diaper and heated up her bottle before she woke us to feed her.  She also gave the urine culture one more shot by putting cotton balls in her diaper that she then squeezed into the specimen cup (turned out to still be too small of a sample).


Sophia’s day began with a fever of 100.7 which made it more likely that she had some sort of viral infection. We did give her Tylenol in anticipation of her upcoming tests.  She was doing much better after having the hi-flow room air going into her nose, so the resident came up with the theory that the culprit may have just been a big booger.  None of the other docs, however, seemed to agree with him (we’ve also come to question some of his “theories.”) but, an infection would be better than the other possible cause of Sophia’s symptoms–aspiration.  We don’t really know what kind of bug she might have, but with her higher temp, she is fighting something (they are also watching for pneumonia).  She’ll remain on “droplet precautions” a/k/a “yellow paper masks for visitors” until the nose culture comes back negative.  Hopefully it will come back tomorrow.  Before they can be sure they’ve addressed all of her GI issues, she’ll have to get over this, so it sounds like we’ll be here for awhile longer.  


Sophia was allowed to increase her feeds from 1 ounce every two hours to two ounces every three hours.  Starting at noon, however, she was NPO again in preparation for her barium enema test.  They also ordered a swallow study to see whether or not she was aspirating some of her milk into her lungs.  They do a video type X-ray while she drinks barium–yum! (we’ll post a copy as soon as we get it).


The cardiologists came by for what they termed a “social visit” and said she looked great from their perspective.  Her new OT also stopped in for therapy and worked on her eye contact, sensory input, and large muscle movement.  


We took her down to children’s imaging this afternoon for the two tests.  It made me nervous when they said they were using water soluble contrast instead of the barium in case they needed to rush her off to surgery.  They strapped her onto the board more gradually this time, so it wasn’t nearly as upsetting to her.  They had a little trouble keeping her legs together to keep the solution in–she was taped up really well, but in the end, the doctor had to just block it with his hand.  After all the rotating around on the board, we  were very happy to learn that her colon was in the right place after all.  They warned us to expect a diaper explosion while her body got rid of the contrast.  Luckily Papa held her while I back upstairs to get her Nuks for the swallow study–but no explosion.  By the end of the night, though, we were used to the banana pudding diapers.  Speaking of diapers, we are going through so many–every time they add a new drug, it seems to loosen her stools even more.  We also decided that no matter what the reflux people say, we are going to change her mid-feeding, after feeding, any time she goes, so she doesn’t get diaper rash.  They won’t do heart surgery if she has a diaper rash since there could be strep which could cause an infection.  


She had the swallow study right after the colon test.  This one also required that she be strapped in, but much less securely.  They filmed her drinking with the slow and medium flow nipples and with a nectar-type thicker solution.  In reviewing the tape, the speech therapist showed us how she would aspirate with the thinner fluid (let some of it get into her airway, which would end up in her lungs).  She did much better with the thicker fluid, so we are now giving her bottles with a thickening agent.  This is increasing her eating time again, but she is tolerating it well–of course, I’m sure she was starving by the time the test was over!   This thickening requirement also means that we have to thicken her meds and stop breast feeding (unless anyone has an idea of how to thicken that).  The speech therapist thought that because of the reflux, Sophia might have developed an insensitivity to the liquid dripping down her airway, so she doesn’t cough to get it out.  She’ll have another swallow study in a few weeks to see whether things have improved and she can return to the normal milk.  Hopefully, she won’t have to bring specially thickened water to school with her!    


Also, any new pictures will be posted in the PICU album until we get back home.