Day 9 in the Hospital

Smiling after receiving a gift basket.

So I am writing yet another post from the hospital.  I really can't believe it's been 9 days here.  Time has a way of escaping you when you're stuck in a tiny hospital room.  At least Jason and I can get out - Lucy hasn't left this room except via wheelchair a few times for procedures.

Today was a long day of waiting.  Lucy didn't throw up overnight and just a couple of times when she woke up this morning.  She had a little bit of an appetite today but not much.  She continues to get some IV fluids but it's been turned way down.  Unfortunately her IV has been bothering her lately, which usually means it's no good anymore and she is still getting anti-nausea and acid blockers through her IV...so we'll see how tonight / tomorrow goes from that perspective.

 - With some digging on my part, we were able to get the health records from Lucy's original discharge from the hospital in Denver, when she was 4 months old.  In addition, I provided info about a broncoscopy that she had done 5 years ago.  After reviewing the records, it was discovered that the existence of the "pouch" was known back then, but no further action was taken as it was evaluated to not be an issue.  In addition, pulmonology believes that Lucy may aspirate when she has these severe vomiting episodes and / or have a slight laryngeal cleft (that is an abnormal opening between the larynx and the esophagus through which food and liquid can pass through the larynx into the lungs).  After we are discharged, we will likely have a CT scan and possibly a Swallow Study to confirm / rule out these.  Overall - more information about possibilities, but no clear path forward.  We understand now that there is not a magic bullet that will solve everything.  We need to take steps to understand each component of her anatomy and determine it's impact on her overall health

 - We had a neurology consult to determine if they thought her vomiting was neurological in nature - they did not (after an 8 minute eval...so you know, not super thorough)

 - GI has NOT been back today to help us understand potential reasons for her frequent throwing up yesterday.  It's probably the most frustrating part of this hospitalization and the largest remaining mystery to Lucy's health with no answers.  I'm not sure what the path forward is for this right now.

So, hoping that Lucy has another great night and her IV is either still OK or deemed unnecessary.  Her blood pressure was down most of today but has been creeping up tonight so I am also hopeful that resolves overnight and isn't an indication that something else will go wrong.  Again, we are so ready to go home.  I think we have learned all we can from this hospitalization and are ready to resume the search for second opinions and manage this outpatient for awhile.

Still hopeful we'll be HOME FOR CHRISTMAS!  Thanks everyone for the support and the special cards and gifts that have been arriving for Lucy and our family - they are truly day brighteners in an otherwise dreary week.

Adding to our wall of brightness in Lucy's hospital room