When can we bust out of jail? . . . er hospital

Hello y'all!  Can you believe it?  TWO blog posts in 1 week, but I wish that the posts were about fun stuff.  A few days ago, I mentioned that Ellie was in the hospital for adenovirus, RSV, and an asthma exacerbation.  She was admitted Friday night and we thought that we might get to go home on Saturday.

Lies!  All lies!

We are still here.  Ellie loves it so much that we decided to stay.  On Saturday, we attempted to wean her off the oxygen during the day, but that was a fail after 2.5 hours. Even with oxygen, her O2 sats stay between 88-92%.  (normal oxygenation is above 95% and oxygen therapy is typically started if under 88%).  Sunday, her lungs sounded much better and she was coughing a lot more (she coughed so hard that she projectile vomited all over me.)  True to Ellie fashion, she decided throw in a few more, non-major medical things. Because, why?

1. Peeing.  Why does my kid not pee!?  She seems to think that it is appropriate to urinate every 12 hours.  The doctors are not a big fan of this, but I told them I am not concerned.  The did a bladder scanner on Sunday night and showed she had tons of urine.  Just as the nurse gets the order to do a urinary catheterization, Bear pees.  Woohoo!

2. Ellie developed significant abdominal distention and harness.  She was not a fan of us even looking at her belly let alone touching it, but she did not cry out.  The x-ray revealed extensive gas. Most likely from her rapid breathing and inhaling so much air as well as stool at the lower colon.  We were still having constipation at home issues even with the enemas through her cecostomy tube as well as rectal enemas so she hadn't gone in a week.  Thankfully, yesterday she had two small BMs after giving a large volume SMOG (saline, mineral oil, and glycerin) enema rectally.  Her abdomen is still a little distended and hard, but it is still much better.

Fever, poor fluid intake, and more oxygen. Early Monday morning, the Turkey Bear thought it would be appropriate to drop her oxygen saturations and require an increase in oxygen twice.  We couldn't figure out why because her lungs were even clearer than before and she was coughing (this is good news).  We did get her out of bed for a while yesterday, she started to eat more again, and she was in a great mood.  She had trouble drinking and we were considering an IV, but we got her to consume small amounts of fluid throughout the day.

Ellie Bear also developed a fever of 102.5 so the doctor decided that if she continues to spike that high, we will do a chest x-ray to rule out pneumonia.  Fortunately, after the Tylenol wore off, she never went above 101.4.

Now for the good news! Last night (Monday night), we were able to decrease her oxygen a fair amount while sleeping.  This is a BIG step in the right direction.  She really needs to be able to go all night without oxygen while maintaining her oxygen saturations before 88% before we go home. I a really hopeful that she will be able to go a few hours today, while awake, without her oxygen mask.

Thank you, The Wish Connection for the visit and balloons!

The nurses, respiratory therapists, and doctors at Dell Children's Medical Center are great!  They value what I have to say.  They accept that I know Ellie better than anyone and they understand that I have a fair amount of medical knowledge given my professional history of being a PICU nurse (okay, that was 14 years ago and back when our charts were on paper) and practicing as a pediatric nurse practitioner.

Andrew had to post-pone his business trip on Sunday due to Ellie's hospitalization, but he has to fly out today and will be back on Friday.  Hopefully we will be home by then!  He has been visiting and relieving me for coffee breaks and meals as well also bringing snacks, toys, and changes of clothes and toiletries for me.  I don't to go home other than after the first day because, but I rather stay near the hospital as it is a 30-40 minute drive for us.  I would like to thank everyone who has been praying for us, sending positive thoughts and virtual hugs, brining me coffee, and offering to help.  I appreciate it more than you will ever know!