Saturday, August 17, 2013

Infectious Disease Appointment Update

Yesterday (Friday) Eli had his appointment with the Infectious Disease Nurse Practitioner.  Her feeling is that the effusion in his lung cavity has turned into an abscess.  That means it's infected.  Their plan is for the abscess to be drained and the contents sent for culture and other tests.  Eli will restart an antibiotic.  We go back to Indianapolis on Tuesday the 20th for it to be drained.

It will be done by an interventional radiologist (IR).  Eli will be sedated (he ALWAYS has to have a pediatric cardiac anesthesiologist for any sedation).  The IR will use an ultrasound to find the correct placement and then he will drain everything he can.  A complication we may be facing is that his abscess may have become an empyema ("em-pie-e-ma").  That's a collection of pus in a body cavity, usually the pleural cavity.  Those are very hard and more difficult to "pierce" and drain.  We won't know until the IR gets in there.

The procedure is scheduled to be done on an outpatient basis, meaning we should be discharged after he wakes from the anesthetic and shows good vitals, can swallow well and is acting normally.  Of course with Eli there's always a chance things can change, so we've been advised to be prepared for an admission.  My bags and Eli's are already packed since we didn't know if he'd be admitted or not from Friday!

He will have to restart antibiotic therapy.  I assumed he'd have to have another PICC line and we'd administer IV antibiotics to him through that.  When Angie NP talked to Dr. Belcher, he said he'd rather Eli didn't have a PICC line at this time.  He thinks we can try oral/gtube antibiotics and see how that goes.  He doesn't want another opening into Eli that would possibly allow for another site of infection.  That's not to say he won't need one in the future, but at this time Dr. Belcher feels it's safer to go this route even with the possibility of a future PICC line (which we're all hoping to avoid).  The choice of what type of antibiotic will be made after cultures come back showing what organism we're dealing with.  Everyone expects that it will be staph aureus which is what he had after the Fontan. 

Draining this may not be the last option for Eli.  If he still has fevers and elevated labs, our next option is to look at the wires holding his sternum together.  Because he had the abscess on his surgical incision and we know it went down to the bone, there's a chance there are some staph aureus cells are hanging out on those sternal wires and causing problems.  To determine if that's the case he will have to have a CT or MRI (which one will be determined when/if the time comes).  If that test shows there's infection/inflammation around the sternal wires, Dr. Abraham (cardiac surgeon) will have to open up his incision (again) and remove the sternal wires.  Then there would be more antibiotic therapy.

If that doesn't take care of it, we'd have to look at removing Eli's pacemaker.  As of now, both Angie and Dr. Belcher feel that the infection isn't in that area, but obviously can't rule it out long term.  Any foreign material in Eli's body -- sternal wires, pacemaker, stitches, etc -- could be the cause of his infection.  In a way we're lucky because we have some very probable starting points.  We know he has an effusion and we know he had a sternal abscess that went to the bone.  Those are the two primary spots to treat.  Their first choice is to drain the abscess/effusion because that procedure will be easier on him so it's the easiest place to start.

Hopefully that will take care of it and we don't have to worry about opening the incision on his chest again.  We know we have to do something though because this long term run of fevers and present infection is starting to take its toll on Eli.  He's sleeping more, he vomits more often, and just in general has more low-key play than usual.  He definitely still has his wild moments and acts crazy, but he also grabs his blanket and Pablo (stuffed penguin he hasn't let go of since early April) and will curl up to rest more often.  He's also asking for more snuggle time from me and Bryan.  Of course we love any snuggle moments we get from our boys, but not because they don't feel well.  

Specific prayer requests:
- that Eli's procedure goes well on Tuesday and he doesn't require an admission.  We know they'll do what is best for him.
- that Eli doesn't get too upset the morning of the procedure because he can't have anything to eat or drink for eight hours prior to it.  It's so hard to deny him when he's asking for something and just doesn't understand.
 - that Zachary does well with us being away taking care of Eli...again.  Zachary has done very well with his first week of kindergarten and we are trying very, very hard to keep things as normal as possible for him.
- prayers for Caleb and Liam.  They are fellow heart babies whose families we've grown to love and pray for on a daily basis.  Caleb has been inpatient at Riley hospital since November 1 and is patiently & faithfully waiting for his new heart.  Liam has been at Cincinnati Children's Hospital since June and is undergoing treatment for Castleman's Disease before he can be put on the transplant list.  Both of these families are expecting a new baby soon in addition to all that is going on with their heart babes.  Incidentally they're both expecting girls....don't you think "Jessica" is a wonderful baby girl name?!?!

If you're able, please wear your Eli's MVPs tshirt on Tuesday as he undergoes yet another procedure in this CHD journey.  Also, we've had a lot of requests for shirts, so we're gathering orders to place.  I will take orders throughout the month of August and turn it in early September.  Usually we have the order within ten to fourteen days after we place it.  If you haven't ordered yet or would like additional shirts, please contact us via email at or on Eli's Facebook page by clicking here.  Tshirts are $15, hoodies are $25, we have three color choices of each item, and it's $2 more for sizes 2x and up.  We have youth and adult sizes available.  We're also excited to start another fundraiser for Eli's MVPS that many of you will LOVE!  Our friend Tiffany Gilley is a Thirty One consultant and has volunteered her services to raise money for Eli's future expenses.  We'll have more info on that soon. 

Thank you all for your prayers and support.  We'll post updates on Tuesday as best we can, but I don't know what kind of time we'll have.  Once again, please assume that no news is good news. 

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