they were right– I am cute!

Sophia got a glimpse of herself in a mirror today and seemed to really be interested in what she saw.  Luckily she wasn’t scared by the things coming out of her nose.  We are trying our best to entertain her here in this little blue room, but I’m worried she’s missing out on a lot of stimulation.  I need to ask in rounds tomorrow whether we’d be allowed to take her outside with her IV tree (probably doubtful pre-surgery, but we’ll see).  

 

You may be thinking that these daily photos are a little obsessive, but as it turns out, it’s a good practice.  You may have heard the current PSA from Susan Sarandon advising parents to have a picture of their children current to at least 6 months in the event the child ever went missing.  Obviously that is a very serious issue, but it struck me funny that people had to be advised to take pictures of their kids every six months.  I suppose I’m a little warped living with John.      

 

Sunday night was a little eventful here in Room 5.  Sophia’s night nurse measured the length of the NJ tube hanging out of her nose and determined that it was two centimeters longer than it should be (indicating it could have been pulled out of its proper position in her small intestine).  So, the doc ordered an x-ray to see where it was exactly.  I guess it isn’t so serious if it is misplaced by a small amount since it would just be moved up into her stomach, but they needed to find out for sure.  After waiting for people to order the x-ray, take the x-ray, and read the x-ray, they determined that it was in the right place after all.  The nurse was then able to restart her continuous feeds, so all-in-all she ended up losing a couple hours of eating (and was basically awake until 2AM).  We were really glad she didn’t have to have that tube reinserted or move to maintenance fluids instead of breast milk.  

 

While we were waiting around for the NJ issue to be resolved, her hi-flow air machine started to alarm.  The final of four visits to fix the issue was at 3AM.  Respiratory therapy decided they should increase the flow of the room air she’s getting, but it has increased her CO2 levels.  They are taking blood frequently to check her “blood gases.”  Luckily, they can just take it from her Hickman line instead of pricking her each time.   (We were initially told she would be getting a PICC line, but a nurse explained the other night that what she really has is a Hickman.  The doctor did tell us at the time that if her arm didn’t work well, he would insert it in her chest, which apparently has a different name– go figure.)  

 

The skin glue around the incision at her neck for the Hickman line fell off on Monday, and it looks really good.  I was worried about a scar, and the glue was starting to look gross, but I think it healed well.  Who knew they could just glue skin together?  

 

Thankfully Grandma’s gasp stopped the evening nurse from giving Sophia her meds (including sodium chloride) by mouth.  She had apparently not read Sophia’s chart or noticed the NJ tube in her nose to realize that she wasn’t supposed to take anything by mouth.  Even if she could, I don’t know what baby would take sodium straight from a syringe–we worked for a month to find a way to get her to take it!  I think both Grandma and the nurse were a little surprised, but it all worked out in the end.  

 

During rounds this morning the GI team said that since Sophia has so many teams following her they were recommending that we be transferred to the general pediatric team to coordinate Sophia’s  care (yet another team).  One of the residents we worked with over in the NICU is now here with general pediatric, so we know she’ll look out for us (although she is from San Antonio and she and John went to rival high schools–hopefully she won’t hold it against Sophia.)  Grandma says that they should probably add some psychiatric service as well since Sophia’s Papa is always messing with her head.  He has a habit of telling her that anything he does that upsets her was Mommy’s fault–and then he comes to her rescue–already trying to be the favorite!

 

Since they can’t explain why her CO2 is higher with the higher flow of room air through her nasal cannula, the pulmonary docs decided they wanted a good x-ray of her chest with multiple views as opposed to the ones they get with the bedside x-ray machine.   Patient transport came up with a wheelchair to bring Sophia down to radiology.  Papa generously agreed to let me hold her on the way there and back, (I don’t think he wanted to be the one being pushed around by patient transport) so both Sophia and I got our first ride in a wheelchair.  I held her lines tightly so we didn’t have any risk of pulling her NJ tube or Hickman line out.  She tolerated the x-ray pretty well, even though she had to be strapped in again.  We haven’t heard yet what they saw.

 

As of late tonight, we still don’t know when surgery will be scheduled, but are really hoping to hear something tomorrow.   This waiting is getting really old.