Monday, January 6, 2014

Making Plans

Not too much has changed since our last update.  Eli has been getting high doses of IV antibiotic every eight hours.  He's not had any fever since we got here and his limp is getting better.  He's still coughing but his lungs sound great so we think it's just nasal/sinus drainage that is making him cough.

There has been a "Meeting of the Minds" in regards to Eli's course of treatment.  Dr. Belcher from Infectious Disease, Dr. Parikh who is Eli's main cardiologist, and Dr. Abraham who is the cardiac surgeon, have been discussing how best to proceed.  Obviously everyone agrees that Eli can't keep getting staph infections in his blood every few months.  Frankly, we're lucky he hasn't been sicker or even died from it.  We have to find out where it's "hiding out" and eliminate that source.  Infectious disease and cardiology think it's likely around Eli's pacemaker and wiring so they want it out.  Surgery doesn't disagree, but wants to be more sure of that before removing the pacer.  Eli does have other material in his body.  He has a Gortex tube in his heart that was placed during his last surgery.  Theoretically, it could be infected, but docs think the chances of that aren't as high as the pacer.  That's because once that Gortex is in there, new tissue starts growing around it and it should be covered up enough to not be causing problems at this point.  However, everyone agrees we can't rule anything out. 

The doctors have agreed to do a tagged white cell study.  For that, Eli will have blood drawn and it will be sent to lab (or pharmacy?  I forget!) where it will be mixed with a substance that bonds to the white cells.  Then it is reinjected into Eli.  Approximately twelve hours later he will have a scan.  He will be sedated for this scan (by a pediatric cardiac anesthesiologist) because he'll have to be still for a minimum of thirty minutes.  The idea with this scan is that the tagged white cells will travel to any areas of infection and "glow" on the scan.  {Remember, white cells are the parts of the blood that fight infection, so when a white cell count is up it means there's infection present in the body.  If we can see where in the body the white cells are gathering, that tells us a probable source of infection.}  The first thirty minutes are a head to toe scan.  If anything shows up (or glows) then more images are made of that area/those areas to try and get a better view of what's happening.  

We expect his foot will show up as an area of infection, but everyone agrees that is a secondary infection and not the source.  The pocket around his pacemaker might show up, the area of his chest incision might because he know he had the incisional infection there in the spring so it could still be harboring staph, his pacer wires may or may not show up (whether or not they're infected) because they are so small, and the Gortex in his heart may show up. 

Here are the four options the physicians are considering, largely based on the results of the tagged white cell study:
a)  antibiotic therapy (inpatient now and long-term out patient)
b)  remove the generator of the pacemaker (the "brains") but leave the wires.  The advantage to this is that Eli's chest wouldn't have to be opened up to remove the pacer wires.  The disadvantage is that the wires would still be there and could possibly have some germs on them that aren't seen on the scan because of how small the wires are.
c)  remove the pacemaker and the wires
d)  remove the pacemaker, wires, and the Gortex graft in his heart.  This option would only be done if something shows up on the scan and requires us to do this.  Any surgery or sedation has risks for anyone, but especially for Eli.  If this option has to be done, it means open heart surgery, his heart being stopped and him being placed on bypass, and a greater risk of death.  The graft would be removed and could be replaced with human donor tissue.  Basically this surgery would be a "re-do" of the Fontan (big, third open heart surgery he had in April).  This is the scariest of all the options and nearly worst-case scenario.  We don't discuss what worst case scenario would be, and if you don't know then I don't think you could handle reading it.

So, right now we're waiting to find out the scheduling of Eli's tagged white cell study.  I've tentatively been told the 7th, but I don't know if that means the day for the blood draw, mixing, and reinjection or the day of the scan.  Not only do they have to coordinate all this with the pediatric cardiac anesthesiologist and the radiologist, but they're also trying to get his PICC line placed while he's sedated so that means coordinating with the PICC line placement team as well.  I do not envy the surgery coordinator here!

Today, Eli's been playing, had a wagon ride, and eaten his breakfast and first round of lunch (he grazes rather than eating a lot at once so his tray will stay in our room usually until the next one is delivered!).  Right now he's napping and getting his antibiotic.  I'm so relieved they're getting him set up for the PICC because his IV is starting to give him problems.  It looks great, isn't red, cool, warm, or swollen, but he cries when it starts and when the flush starts.  He's very, very careful with it and always wants it to be covered up.  He was the same way when he had PICC lines in the past.  I've never seen anyone, adult or child, take such good care of their IV!  However this has been in several days and we may be using up that vein.  He's not  a very hard stick to start a new one, but if we can get it to keep working until he gets his PICC that means one less traumatic experience for Eli. 

Yesterday we took lots of pictures of the snowfall around here.  I'll try to post some later.  I know it's giving lots of people headaches, but since I'm here with Eli and not needing to go anywhere, I decided to just enjoy it.  I'm one of those who loves the snow anyway.  If you're one who doesn't love it, maybe you can think about the peace it's bringing my frazzled mind and just appreciate it for that fact!  I'm sorry to all of you who are inconvenienced by the snow and temperatures right now.  We want to send a special thank you to all the doctors, nurses, techs, and all staff at PMCH who have still made their way to work or even slept here so they can keep their shift.  As the parent of a patient, I am very grateful to everyone who has kept things moving so smoothly despite the conditions outside.  The same goes to my coworkers at Jasper Memorial who are working hard to keep patients and their loved ones cared for properly during this weather.

As I was typing this, I had a realization.  Three years ago today started our journey as a family in the CHD (congenital heart defect) world.  Eli's diagnosis came at St. Mary's Medical Center around 4am on Jan 6, 2011.  He was ten weeks and one day old.  Today is the anniversary of his first helicopter ride.  Right about now is when his helicopter landed here without us as we drove from Evansville to Washington then on to Indy. 

Our sweet little baby as he was being flown from Evansville to Indianapolis three years ago today.  Thanks to the incredible StatFlight crew for taking photos and sending them to us along with a letter and the tiny pillow used for his head.  If you look closely you can see the tree line and some Hoosier landscape out the window above Eli's head.

Three years ago today I felt lost, scared, numb, alone, frantic, and weak.  Since then things have changed so much, Eli has conquered so much, and our family has learned so much, yet I feel those same emotions today as I did three years ago, just for slightly different reasons.  As usual, thank you to everyone who has had any role in helping us along the way.  We are so grateful to all of you every single day, not just the rotten days.

Specific Prayer Requests:
- that Eli does well with sedation for his tagged white cell study and PICC line placement
- that the results help the doctors easily make the right decision for Eli's care
- for his IV to stay good until the PICC line is placed so we don't have to start a new one for just a couple days
- for all the kids and families who are here.  Basically, if they were kept here over the New Year's holiday and through the storm that hit, we know they were the sickest of the sick.  There's a decent chance (in my mind) that Eli may be the healthiest of the kids on our unit.  No one should suffer, but it's even more awful when it's a child. 
- that his cough goes away and he doesn't have anything more than nasal drainage causing it
- that whatever plan is chosen by the docs, it gives us peace of mind and (much more importantly) that it's the right plan of care for Eli.

As always, I will update when I have more information.  Please be safe, warm, take care of your loved ones (human and non-human!), and always remember to cherish Every Little Beat...

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