perspective

Monday I was having a pity party.  I am sick of the hospital, so is Lucy.  I am tired of Lucy being sick.  Let's be honest, she hasn't been healthy since last May.  Yes, we have good days, but overall Lucy just doesn't feel good which leads to a lot of crying.  This hospital stay, my patience are at an all time low.  I find myself getting annoyed when Lucy is extra 'needy' or is struggling to get comfortable enough to fall asleep.  Then I hate myself for it because she can't help it.  How can a four year cope with everything that's happened in the last year and here I am annoyed?

Then yesterday, from a distance, I watched two parents make a decision to say goodbye to their child.  Siblings and extended family came to comfort and say final goodbyes.  And then they left without their child.  Leaving a void that will never be filled.  My heart ached for them.  My mind easily went to "what if that was us?"

Man, does a day like yesterday change your perspective.  Lucy is alive and although she is not healthy, she is not nearly as sick as she has been.  And I thank God that she is here to annoy me and remind me that when my patience are short, I need to lean on him.

I probably should have foreseen this hospital stay.  About two weeks ago I was checking her saturations and she was resting in the mid sixties.  I immediately called Dr. Husayni's office and after sending a video of her breathing we all agreed that bumping her up to four liters for some extra support was fine.  At her appointment that same week, she showed no signs of distress and she was actually a little silly during our visit.  Then Friday Connor woke up with pink eye and a cough.  Within a day Lucy had all the symptoms too.

Last Tuesday afternoon I noticed Lucy's respiratory rate had increased and that night we were up most of the night coughing.  By Wednesday the cough had gotten even worse and she started retracting.  We spoke with Dr. Husayni again and he did not want to wait until our Thursday appointment, so we made the trip to the ER.  In the ER we drew a blood for a virus panel and electrolytes then tested for the flu.  We headed up to the PSHU that evening on high flow oxygen at 10 liters to watch.  Even on 10 liters during coughing fits she would drop her saturations to the low sixties.  Over the weekend we bounced around on flow, down to three then back up to fifteen and anywhere in between.  They put her on a stronger antibiotic to cover  aspiration and anything that may show up.  However, all tests came back negative.  The likelihood was that it was a virus that did not show up on the panel and we would just have to let it run it's course.

One thing the team was worried about was the injection had worn off and Lucy was again aspirating.
Dr. Sherman stopped up yesterday evening to scope her and look at her vocal cords.  Thankfully what he saw was good news.  She is still getting very good closure.  So we do not have to restrict oral intake!!!!!!  This confirmed that we are probably dealing with a virus.

This morning we moved off high flow to a regular nasal cannula.  We will need 24 hours with no episodes and then we can talk discharge.  While we are inpatient though we decided to go ahead with gastric emptying study to see her stomach motility.   This should give us an idea of what is going on with her stomach and help us to determine if something can be done about the throwing up.



She hasn't been super upbeat while we have been here and that's understandable, but SpongeBob SquarePants made a visit to the unit and we got the biggest smile.






Music therapy and a mustache party have helped a bit, but we really can't wait to get home!