Wednesday, May 22, 2013

Days 34 & 35, Post Op Fontan (May 21 & 22)

There's not much to recap for the 21st.  Eli was asleep when Dr. Abraham came to pull the chest tube so he said he'd wait.  He did say that he wanted Eli to go home on Wednesday.  Earlier in the day, Dr. Belcher had been in and said that we would NOT have to continue IV antibiotic therapy when we were home, but would for as long as Eli was in the hospital.  That news was a welcome shock to us!

Dr. Abraham also discussed something he's been watching on Eli's chest x-rays.  The right side of Eli's diaphragm is rising.  That doesn't allow for full expansion of the lung on that side and could eventually impede the growth of that lung as Eli ages.  Instead of Eli's diaphragm rising and flattening as he breathes, his diaphragm "rocks" which doesn't let the right lung work to its full capacity.  It's likely caused by a nerve being cut during surgery.  To fix it would require another surgery.  The doctor would make an incision on Eli's side and then he would "stitch" down the diaphragm.  Dr. Abraham was thinking he would be able to discharge Eli and reevaluate in two weeks at his check up.  He said that he may just admit him from the check up and do the surgery at that time with an anticipated stay of 2-3 days.

Today (the 22nd), Eli's chest tube was pulled and he later went for a chest x-ray.  Prior to the x-ray we were fairly confident we would be discharged today.  After they read the x-ray we realized we aren't coming home today.  The x-ray showed more fluid.  The fluid is either where the chest tube wasn't, or it's possible the chest tube was clogged and would have to be pulled anyway.  Either way, it doesn't matter because the result is the same:  still in the hospital.  Of course I'm anxious to get home, but it would be much harder to have to turn around and come back because Eli's in distress than to stay now and get him completely ready for discharge.

The plan now is to repeat the chest x-ray in the morning & compare it with today's.  He may need another chest tube.  I'm also wondering if Dr. Abraham may go ahead and work on Eli's diaphragm while we're here.  I can't help but wonder if the reason he keeps accumulating fluid and can't kick that last 1/4 liter of supplemental oxygen is because of this diaphragm issue.  That is me playing doctor.  We'll know more over the next 24-48 hours. 

Thank you so much to everyone who said extra prayers for us to get home today and wore their Eli's MVPs shirts.  I'm disappointed, but also relieved that they're obviously putting Eli's health first.  I almost felt bad for them having to tell me we weren't being discharged because they want it as much as we do!  Thanks again, and keep us in your prayers.  We got a nice goody box delivered today to the hospital with some chocolates in it that I will definitely be digging into tonight (probably in the bathroom so Eli doesn't see!  He's still on the low fat diet!)

More updates to come as we learn more over the next day or two!  Thanks again for all the support :)

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