Post Op Update

The past few days have been a blur and I expect that my spelling and grammar in this update might be pretty hazy as well.  Alessandra had her thoracic duct ligated last Thursday along with the pleurodesis procedure.  The surgery took about 3 hours and she has a 2.5-3 inch scar on her backside in between her ribs.  A painful location, without a doubt, more painful than her sternal incision.  She was extubated shortly after surgery but was struggling.  The purpose of the procedure was to close off the duct that was causing all of that leakage in her chest.  It was a last resort since the other less invasive measures did not work.  For double assurance, after the ligation, the pluerodesis chemical was inserted through her chest tube into her chest cavity to inflame the tissue and seal up the leaking channels.  Another painful procedure.

The first day after surgery was a typical post-op first day.  She was heavily medicated and monitored to get her through the worst part of recovery.  By nightfall she had taken a turn for the worse and needed to be re-intubated.  She wasn't getting enough oxygen on her own and her lungs were working too hard.  Her heart rate was high and she was just so uncomfortable.  The idea was to give her some additional support for the night so that she can rest and regain strength.  We hoped to see improvement by Saturday but her lungs were worse.  The reason for this I don't know and can't understand.  It seems that her body reacted to the pain and invasion by clamping down and producing secretions, almost like RSV or a respiratory infection.  Part of her right lung collapsed and she started to run a low grade fever.  Her sats were terrible and her lungs sounded like crackling wax paper.

Since Ali is intubated, she needs to be heavily sedated to keep her from hulking out and rejecting the breathing tube.  Poor kiddo has been sleeping for days.  Now, we have had many ups and downs and trying times through this but last night was by far the worst night we have had.  Even though she's sedated, she was completely intolerant of anyone messing with her.  When the nurses try to suction her or simply re-arrange her position she clamps down so hard that the ventilator cannot support her and her sats drop.  Last night they dropped really low, like 15-18 low.  I've heard that the pulse ox isnt the most reliable measure, especially for anything below 60 and by looking at her she certainly didn't look that low, but still.... it was a new complication and low numbers that I have never seen before.  Wanna know how to turn your mom into a crying lunatic? Drop your sats to 15.

Today has been a little better.  We have her on a new sedative that she seems to be more comfortable with.  It has suppressed the hulk so far.  We started steroids today and the suctions seem to be more productive.  I guess we will know more with her x-ray tomorrow.  The goal is to get her off the ventilator as soon as we can since her Glenn physiology does not respond will with the positive pressures of the ventilator.  For now, she needs the support and the rest.  Poor kid has been through a lot and needs time to peacefully heal.

Of course there are other complications that come with the territory.  The combination of her response to surgery, going one day without diuretics and retaining IV fluid has caused her to be very swollen.  Everything in medicine seems to be a trade-off.  What fixes one thing, screws up something else.  We are trying to flush the fluids out of her with diuretics but she's still positive everyday, and of course low on potassium since the electrolyte balance is thrown off.   The second issue is that she has an line in her femoral artery for IV meds (I had a weepy rant in one of my posts about this line the last time it was placed because of the risks being blood clots...) well, this line has caused a blood clot.  The good news is that its small and not likely to break off.  She's getting shots of  (iforgotthenameofit) to help break down the clot and to keep it from growing much bigger.

Ugh- So that is where we are right now.  I will be sure to update once things get a little better. I know they will get better.  We always knew that it would be a rough first year.  I never expected it to be this rough.  We would really appreciate any and all prayers for Ali.  She is going through so much.  She such a sweet little girl and I love her so much. I cant wait until she can open her eyes again and feel good again. 
Thank you for reading,
Melissa

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