So the important stuff. Tyler seems to be doing well. His liver/kidney function is doing well so they upped his captopril to 6ml/3x day and lasix to a whopping 1.2ml/2x day from 1ml. His heart seems to be doing well and sats were the normal mid to high 80's after resting. They started in the 70's after walking to the appt so it fluctuates a bit depeding on excercise or the pulse ox. I blame it on the machine to keep me happy.
So the plan is going to UCSF on November 13th and surgery on Nov. 18th. They will keep him on milrinone for a week prior to surgery to tune him up. The goal is to be able to complete his fontan without a fenestration which is done in poor candidates for Fontan. The whole reason we postponed surgery in August was his surgeons fear of having to do a fenestration. Our surgeon said kids with fenestrations generally sat and have the same energy level prior to the Fontan as after Fontan, so if possible, he tries to optimize these kids hearts to eliminate this need. So that is what we are trying to do. I have full confidence in Dr. Azakie. I truly believe that we have one, if not the best pediatric heart surgeons for hypoplasts. All of his kids seem to do remarkably well and we are just so blessed for his wisdom and knowledge and love for these little ones. Trying to optimize his heart function with our prayer team and increased meds so he can sustain a fontan. If the heart is too weak they of course will do a fenestration and we will know that it is all in the Lords hands.
The best part of the appt is watching Beauty and the Beast. I haven't seen it in so long and Tyler loved it.
2 comments:
Lots of prayers that they will be able to do the Fontan as scheduled. We love you guys! On a sidenote...I DVR'd Beauty and the Beast the other day and watched it yesterday with Roman. So cute and brought back so many memories. Love the music.
It's good to hear you've got another appointment on the calendar and it looks like you're making progress toward that end. I hear you on the increase in payments too. We paid almost 10 times as much to have Sadie as Audrey because my employer changed benefits plans on us between the two. Not cool. :-(
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