It's been a rough 2 months!

At least she is still smiling for the camera...

I have not updated lately, not because it hasn't been eventful or I haven't had anything to write about, but because quite the opposite - since October 18, Lucy has been very, very sick.  I'll do a quick outline here and then dive into the current state:

October 18 - 30 - Severe episode of throwing up, started on the Thursday morning, while she was at the neighborhood Montessori school (her school was off for MEA) and then escalated to around the clock throwing up.  I took her to the ER the following Tuesday (I think), where they gave her the customary fluids, MRI (in case of shunt issues) and chest X-Ray, which showed lung cloudiness - likely pneumonia.  They sent us home with a double dose of antibiotics (like 2 different ones) and she slowly recovered at home.  She felt good enough to go to her school Halloween party and Trick or Treating, which was great - we were in the hospital 4 years ago on Halloween, I didn't want a repeat.

Halloween 2018

November 9 - 13 - Another severe episode of throwing up, started on the Friday morning at home, but she felt OK after that...however she threw up at school after lunch and continued throughout the weekend.  This was a quick episode and she was able to be back at school for a few days before Thanksgiving break. 

 - We happened to have a visit with pulmonology  already scheduled for that week (despite her recent pneumonia, decision was no change to current protocol, keep up with inhaler and add "cupping back pats" 1x / day or more as needed - the goal was for this to help clear her lungs.  Pulmonologist acknowledged she has persistent cloudiness on the right side of her lungs). 

 - We also had a pre-planned visit with GI. The GI doctor said she may have something called "Cyclical Vomiting Syndrome," which is really an absence of a diagnosis when no other reason for repeat throwing up can be found.  He ordered future labs for when her next episode started...we didn't have to wait long

November 25 - November 30 - Another episode of throwing up, started on the Sunday morning (I think - they all tend to blend together!) and lasted throughout the week.  She was able to go to ONE day of school on Monday, December 3rd when episode 4 started...We had the labs run and received many test results with no definitive answers.  Areas of concern were high white blood cells, low hemoglobin and low carnitine (related to metabolism).  GI suggested we try a supplement to help with the low carnitine.

December 4 - 7 - Another episode of throwing up, started on the Tuesday morning (middle of the night, really) and lasted throughout the week.  By Saturday, she was not throwing up, but had spiked a fever.  Meanwhile, Abby desperately emailed and called several of Lucy's care team to request addition tests (e.g. broncoscopy to check for anatomy abnormalities), information, etc.  Nothing new was recommended by doctors.

That brings us to our current situation.  After have a fever, shallow breathing and general not feeling well for several days, Jason and I took Lucy to her primary care doctor on Thursday, where we were quickly administered Tylenol and a nebulizer due to fever and low oxygen saturation.  Unfortunately, these treatments were unable to improve Lucy's saturation so we were advised to go to the ER...IMMEDIATELY.

We stopped at home for some clothes and to say bye to Grandma and Grandpa (who were already there helping...thank goodness!).  Upon arrival at the ER, we were told Lucy met the qualifications of sepsis and were quickly ushered to the most high-tech room of the ER for treatment.  She was given IV and oxygen to get her stabilized and then was admitted to the hospital, where we currently are.

At this moment, we are waiting for her oxygen needs to decrease and her hemoglobin numbers to increase (she is on the border of needing additional red blood cells, so a transfusion).  Doctors are focused on trying to determine why those numbers are so diminished and not being created in her body as quickly as expected.  (If you've read this far...you might see a potential reason...she's been sick for basically 2 months!!!  Her body is completely depleted of reserves and is TIRED!).

A silver lining to this hospitalization is that it forces specialists of different areas to work together to diagnose and plan for Lucy's long-term medical needs.  She is a highly complex kiddo that no doctor has really seen the likes of.  Many have experience with a patient with one of her diagnosis, but not the combination, so partnership is paramount, which Jason and I feel is lacking in her regular out-patient visits.

We continue to advocate for her and are seeking second and sometimes third opinions as we navigate her latest health challenges.  We will keep you posted on how she does at the hospital and I am confident that we will be HOME FOR CHRISTMAS.