From papa Bo:
We haven't blogged lately, if you know us well that's usually because Orion's doing well and we got our hands full 24/7... and he has been doing good. After the surgery O was so small from all the diuretics that you could make out his every bone. His eyes were sunken in and glazed over from all his meds. Check out the pictures of him now! He has been getting up and getting stronger each day. Each day getting fatter and happier, still has a problem sleeping more than 20 mins (he so traumatized his body wont let him enter deep sleep), but over the past few days we have gotten so many smiles, giggles, and goofyness, we've almost forgotten all the hardships we've faced in the past two weeks.
Then came this morning when the doctors did their rounds. We've been aware for quite sometime now that one of his chest tubes, (his only chest tube right now, the one we are waiting on to go home) his left plural tube, has been draining post-op for almost two weeks now. It hasn't slowed down, in fact it's daily drainage volume has increased more and more. Orion's diuretics keep increasing but the drainage has not slowed down.
This weekend the team hear will be watching the drainage very carefully. Orion's diuretics have been adjusted put on the maximum dosage, short of killing his kidneys, to see if they can get all the fluid out. It's a situation in which, the excess fluid can cause the RA pressures to be high, and when the RA pressure is high it causes excess fluid to collect. The plan is to relieve fluid with IV diuretics, which will in turn relieve RA pressure, which will in turn relieve fluid.
We are praying O's RA pressures go down and this is just a prolonged immune response from the surgery two weeks ago. We hope his fluid levels this weekend improve and his heart relaxes. If the chest tube drainage remains high through the weekend, Orion will go into the CathLab, for the fourth time in a little over a year on Monday or Tuesday.
They will go into the CathLab with the concern that the RA pressure is (once again) high, the original problem that we came into clinic with. O's repair of the tricuspid valve and the placement of a new 19mm (yeah almost 3/4 inch) pulmonary valve in theory should have relieved the pressure, at least enough to keep from his body from causing effusion into his lung. The RA pressures post-op were great and remained low for a while, so they decided to take out his "RA line," this line was a little probe that stuck into his Right Atrium and measured pressures directly. It has been a week since they took out that probe (they had to take it out in order to take out one of his more uncomfortable chest tubes, because if there is excess bleeding from taking out the RA line, the blood drains from the chest tube). The only real way to test the pressures inside his heart now is to go into the CathLab and do it through a cardiac catheterization. If the pressures are high they will either go into the O.R. and do a modified version of the Bi-Directional Glenn (SVC re-routed to the Pulmonary artery), or in the CathLab a balloon will be placed to open up the PFO in the artial wall to buy some time and do the Glenn later.
OH BTW TAWNY HAS A LOT OF HAPPY STUFF TO SAY check back later...