“oh good, she’s got big thighs”

Sophia’s oxygen levels dropped again early this morning so they put her back on high-flow room air and decided to do an x-ray of her chest in the middle of the night. They just wheel the x-ray machine to the bedside, ask me if I’m pregnant, and snap away.  When the x-rays came back, the doctor informed us that Sophia had contracted a pneumonia so she would need some antibiotics and asked if we wanted them administered through an IV line or a shot.  Since it was the middle of the night, we decided that a quick shot would be better than all the poking around required to place the IV.  It took several hours for the pharmacy to get the meds up to the floor, and when they arrived, the nurse realized that the dose was rather large for one injection.  She decided to give it in two instead, so around 7AM, Sophia was rudely awakened by two nurses, one on each side of her bed, plunging syringes into her thighs on the count of 3.  When they zipped open her sleep sack, one of them said:  “Oh good, she has big thighs!”  I can’t imagine we’ll hear that again.  She was a really good sport about her first dual shots–I guess they put some Lydacaine in there for pain.

 

The docs came in for rounds and started by saying things were not going the way they wanted.  Since Sophia’s temp was 101 even after the shots, they decided they needed yet another antibiotic, which cannot be delivered via a shot so the doctor ordered a peripherally inserted central catheter (PICC line) to be placed to allow for it to be delivered and for her to get fluids while they clean out her lungs.  She had to have the PICC line inserted in the operating room under general anesthesia, but will also need a peripheral IV in order to get fluids while in that procedure.  They are doing the PICC line because it will last much longer than an IV (and they can do blood draws from it, so no more 3 attempts for blood draws any more!).  They had to wait until her stomach had cleared out before starting the procedure, so she was good and hungry by the time they started.  She was very sweet the whole time she waited and eventually just fell asleep on Mom’s shoulder.  The resident anesthesiologist said we’d only be able to accompany her into the surgery room if the child was experiencing separation anxiety.  Grandma asked “what about our separation anxiety?”  

 

The GI doc also indicated that based on the results of the swallow study from yesterday and the complication in her lungs, it was his conclusion that she needs the G-tube/Nissen.   Dr. Foker (her heart surgeon) will do the surgery, but he is booked up all week, so it looks like we’ll be here for quite awhile longer.  Her next heart surgery will likely exacerbate her reflux, so they really expect that even if she didn’t need it now, she’d need it then.  The nurses have said that they’ve never really seen a heart baby in this situation w/o a G-tube.  

 

The PICC line was installed successfully–her arm veins were too small, so this one was inserted in through her neck and comes out through her chest (uggh!).  She’ll wear a big bandage over it while it is in to prevent infection.  They gave her an anesthetic which the nurse said makes little ones really crabby when they come to but she was fine once they let us hold her.  She did great with being extubated, so was able to return to the regular floor instead of to the PICU.  

 

As soon as she got back to her room, they took her down to another floor to have an NJ tube inserted (this is like her NG tube, but ends up in the small intestine, rather than her stomach, so it should help with reflux).  The technician came out especially to tell us that she was the best baby she’d ever inserted an NJ tube into.  They had her swaddled up and she only squawked when they taped the tube up on her nose (we could hear her from the waiting room-ugh!).  She finally got to get some milk at 6:30–10 hours after she last ate!  She will receive food through this tube as a continuous flow for awhile until they allow her to gradually start her bottle feeding again.  

 

After she got caught up on meds and settled back in her room, we held her for awhile.  She started burning up again and this time had a temp of 102.9, so she got her second dose of rectal Tylenol (luckily Mom and Dad don’t have to administer it).  Her heart rate was also really high and her oxygen saturation dropped.  The on-call resident was concerned about the placement of the NJ tube, so she had another x-ray of her chest and abdomen, and her feeding was stopped.  She’d only received 1/4 of an ounce (but she is getting maintenance fluids through her PICC line).  It breaks my heart to see her sucking madly on her pacifier hoping she gets some milk.  We have been allowed to dip it in a little glucose water so her mouth isn’t so dry.  Even though she isn’t supposed to swallow liquids at this point, she does still have to swallow her own spit, so it is okay for her to have a little bit of this stuff.  

 

The x-ray came back looking good, and her lungs had even cleared some.  Her C02 levels are also good, so we’re just waiting for the cultures to come back.  They are trying one more time to do the urine bag tonight–we’ll report back tomorrow…