Sunday, September 29, 2013

He's Definitely Feeling Better

Overall it was a low-key day.  The Infectious Disease doctor is confident Eli doesn't have meningitis.  That diagnosis was made as he watched Eli throw a ball around the room (alternating hands) and tease his nurse.  Doc said "kids with meningitis don't do that.  We'll rule that out."  Everyone seems to think the most likely culprit was his blood sugar.  We think that was low due to a combination of some of his meds and changes are being made.  Eli was taken off the two big time antibiotics that were started Saturday morning in anticipation of a hidden infection.  He's been restarted on his routine course of Cefazolin (another antibiotic) that he's been taking since August 23 when he tested positive for staph aureus.  We may still be on target to complete that dosing schedule later this week.  We are still waiting on the results of blood cultures drawn in our local ER (takes 48 hours). As far as discharge goes, it will probably be a few more days but no one has said anything specific.  Also, we haven't asked.  It's a protective mechanism we developed during our multiple week stays earlier this year!

Eli was goofy on and off through the day.  It's obvious he's still weak and shaky from the meds yesterday and the seizures themselves.  He took two good naps today and was asleep by 9pm.  That's early for him when he's in the hospital.  When he was awake, he was silly and kept changing his mind regarding what movie to watch ten minutes into a movie.  That's very normal for him while in the hospital!  He was up moving more and talking a lot. 

Bryan's parents, aunt, and sister came to visit.  He went back to Washington with them so he can be with Zachary and return to work.  Eli was very sad when Daddy left, but we took our first trip to the play room and that helped perk him up.  He didn't play long but was mad when I made him leave.  His appetite has been pretty good today, but we're continuing the nighttime feeds.  One thing we didn't get accomplished today that we MUST do tomorrow is getting the boy a bath.  We started to about four times today but each time something happened to prevent it.  Once was a visit from a doctor, once his food tray arrived earlier than expected, and twice he fell asleep rightas we were gathering supplies.  He doesn't smell good at all due to the dried sweat and getting sick twice on the helicopter.  In addition, his hair has a lot of crusty tangles because of the goop used during his EEG yesterday. 

Prayer Requests:
- that Eli has a good night's sleep and is even stronger on Monday
- that he poops soon.  Yes, we're back to that.  I think just being here gets him backed up.  If he doesn't go by tomorrow, I'll ask for some meds to help him along.
- for Zachary as he starts another week of school without Mommy and Eli.  Z has put up with so much and I don't think he realizes how different our lives are.  That's a blessing and sad at the same time.
- for me to get some much needed rest as well so I can take good care of Eli and make the right decisions for him
- for our fellow heart friends: 
     Caleb (who has been hospitalized since November 1 as he waited for the perfect heart to become available.  His miracle happened and he had a heart transplant last week!  He is doing great so far!)
     Liam (who was just recently listed on the transplant list after a long battle to get there)
     Nathan (just had open heart surgery that wasn't able to get the result they wanted, but is doing well through his recovery)
     Madison (who will be having her Fontan in a month). 
These kids and their families are good friends of ours (even if we've only met a few times or are only internet friends!).  They serve as an inspiration to us and help us get through some rocky times.  I hope we can help encourage them as they do us.

Thank you for caring about us and following our story.  I looked at our blog this afternoon and saw that we've had over 20,000 views.  You all certainly know how to make a family feel special!


  1. Jessica, you and your family are always in our prayers. You are such a good mom. I don't think you realize just how strong you are. So many would have broken down by now, but the love of your boys pushes you forward. You are truly an inspiration to me!

  2. So glad to hear that Eli is doing better, I can't imagine how scary all of that was for you! You are all constantly in our prayers,and will will be praying you are able to get back to "normal"as soon as possible! Thank you for including Madison in your prayer request, it means a lot to know that other are praying for her=)