Riley was mostly the same today with a couple of small improvements:
- Riley continued to have a fever this morning, but it subsided by early afternoon.
- The preliminary blood culture did not show any signs of an infection.
- A drug called milrinone was restarted to help with Riley's heart function. His perfusion seemed to improve (his hands were warmer and his coloring was a bit better).
- His breathing did not seem as labored.
- He finally got his bowels moving, and he seemed more comfortable afterwards.
- He was asking for food and he ate a little cup of applesauce, a bite of yogurt, and a couple bites of peaches from a fruit cup. All stayed down.
There were also some negatives:
- Chest tube drainage remains high. In the first 16 hours, the new chest tube on the right side put out more than 2000 milliliters (that's more than a 2-liter of soda). The left chest tube also continued with high volume. It had put out more than 600 milliliters when I left around dinnertime. The middle drain is very slow, but still producing some output.
- His heart rate remained elevated in the high 140s most of the day.
- The lower half of Riley's body seems to have quite a bit of edema. His thighs have gotten much bigger in the past 24 or 48 hours and the lower half of his legs are also swollen.
- He is getting infusions of Fresh Frozen Plasma (FFP) to help get the fluid back into his vessels and out of his tissue. This is on top of the albumen replacements (now at 75%; that means for every 100 milliliters that comes out in the tubes, 75 milliliters of albumen is being given back through his IV).
Also, we have some pictures of Riley at the hospital from before and after surgery. We tried to capture his extreme blueness with the digital camera, but it was so much worse in person.
5 comments:
Can the fluid be a chylous leak, or have they ruled that out?
This all sounds eerily familiar to the situation last year, when the arrhythmia apparently caused the Fontan to initially fail in his weakened post-surgical state. Today, like last year, it seems that an early post-surgical arrhythmia caused a stress from which he's still recovering.
There was also a buildup of fluid behind the lung last year - another similarity to today's situation.
Remember how slow his recovery was last year? And then all of a sudden he was much better - almost literally overnight - once the arrhythmia was corrected and his body recovered from the trauma of the surgery.
The main differences this year: the fact that the arrhythmia was corrected without requiring the ECMO, and the blueness in his extremeties - both of which could be attributed to the fenestration.
I'm sorry if I appear to be back-seat-driving from 2500 miles away. That's certainly not my intent. :-) I was just struck by the similarities between his post-surgical symptoms last year and this year.
What are the doctors saying?
The fluid could be a chylous leak and they really wouldn't treat it any different then they are right now I would imagine. Just replace the protien (albumin/FFP) and hope the drainage slows.
The good thing is though, that his arrhythmia is being controlled with meds and that he has responded to the Amioderone and Milrinone, and that his blood pressure and perfusion seem to be intact (His urin output...which is one of the first signs of poor perfusion is good I assume). And he is having Bowel movements....good sign of perfusion to the gut.
Unlike before when they needed ECMO to manage his low BP and arrythmia issues. Then his HR was like in the 200's if I remember correctly and his mean arterial pressures were really low.
Is he on dopamine or any other "pressor" levophed, epinephrine?
Its just that darn chest tube drainage.
HOpefully things will slow down.
Keeping an eye out....
Cousin Dave and Marisa
Well, the reason I asked about a chylous leak is: that could mean that the chylous leak is the root cause of all the other symptoms - the leak causes fluid buildup which interferes with cardiac efficiency which increases heart rate and causes the edema... etc. This coupled with susceptibility to arrhythmia (caused by asplenia) would explain his slow recovery, both last year and this year.
The good news is that last year, after the initial problems, he recovered very nicely (though slowly), so hopefully we are now replaying last year's post-ECMO path: slow but steady recovery as he heals.
this morning when i dropped my son colin off at school.. we went straight into church.. my 5 year old daughter isabella lit a candle for riley.. my son colin riley is 13 and in the 7th grade.. he has been reading riley's journal... he is going to ask his religion teacher if the class can pray for riley everyday... god bless you riley...love. the mcintyre's.. gina, mark, kristin, ashley, cody, colin riley and isabella.
I second what Babs said ! I can really tell how blue he was. I just hope you all will come through this soon. I want to see Riley (and you all) out of the hospital and tube free !
Joce
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