“you had to ask for a private room!”

Well, it has been yet another eventful day here at the hospital, overnight Sophia’s saturation levels dropped to a critical level so as you can see  above she has the nasal cannula back on her face.  They came by for rounds while she was eating and her breathing was extremely laboured and she was making a snorting noise she’d never made before.  They were very concerned about her sudden need for oxygen, so thought either she had fluid on her lungs again (more diuretics) or she had some sort of infection.  They leaned toward the infection because of how quickly the episode came on.  We became subject to isolation rules and were immediately moved to a private room.  Anytime someone comes into the room they now wear what John has come to call “haz-mat gear” (yellow paper masks and paper gowns).  

 

They stopped all feeds (except meds) and ordered IV fluids.  They also changed her over to hi-flow oxygen, which creates some more pressure in the hopes of clearing her lungs out.  They drew some more blood to check on her CO2 levels and to see if she had a bacterial infection, but one of the samples clotted so they needed more.  A second phlebotomist was sent in to do that draw and collect the blood gases again (to check CO2).  Although I explained that she has very small veins and almost everyone has trouble–he insisted that he almost always could do it and didn’t seem concerned.  Well, after trying the failed IV site on one foot and trying the second foot without succeeding he gave up, so the docs settled for a heel prick for now.  It is so awful to watch her getting pricked over and over again while madly sucking Sweet-Ease off my finger.  Somehow I survived with my queasy stomach and aversion to blood, but I did warn at least one of them beforehand that I might faint.  

 

The IV insertion was just as bad–the foot didn’t work, the arm didn’t look promising, so they went to the forehead (where they started on our first night).  I wish there was a good way to specifically request the person from the vampire group that we really like and who had great skill in inserting the IV.  If something happens to this IV, I’ll figure out a way.  The person we got seemed to have no experience with infants–she didn’t even know about Sweet-Ease!  She placed a rubber band around Sophia’s head to serve as a tourniquet and then asked if she could cut her hair! Both I and the nurse both blurted out at the same time–NO!

 

As it turned out, the urine sample from the previous night was too small to do a full urine culture, and the sample showed some white cell activity,  so they ordered a catheter again.  A urologist tried unsuccessfully several times to insert the catheter, leaving us with only two options–a surgical catheter or holding the cup again.  By the end of the day, they determined they really didn’t need it that badly–thank goodness!  

 

Sophia also got a nose culture, which was by far the least painful of all of the procedures of the day.  In the midst of all of this, PT came by for exercises–we politely told her she’d already had a pretty full day and would have to skip the workout until tomorrow.  

 

Cardiology visited and was really pleased with her condition post-hi-flow oxygen.  They turned it down to room air, so right now she is just getting the flow, and her sats are still good.  

 

The GI doc then came by to say that they are working to rule out infection now, but are really pleased that she is not getting worse.  If the culprit is aspiration (milk in her lungs) we have a lot of decisions to make.  Because this could happen again, some docs recommend that she get the G-tube/Nissen now, others will wait.  It sounds like she is likely to need that after cutting through her sternum during her second surgery, so we may be there inevitably.  He is moving forward with the barium enema tomorrow (another horribly painful procedure) and gave approval for Sophia to start eating again (only one ounce every 2 hours).  

 

Our private room turned out to have a heating difficultly–60 degree air venting out even though the thermostat was turned way up–so we are moving again (as John says, another step closer to the door and home).  We’ll be spending the rest of the night “snuzzling” her (as Simon would say) between feedings…