RSV Day 9

Ok, day 9 sucked!! (Sorry, but it did!) So the Intensivist was supposed to come up and place a central line this morning, and in walks the resident whom we knew was working in PICU (where the intensivist is in charge). The resident tells us that Kaitlyn is scheduled in surgery, OR, at 2:00pm. We fought, of course, to get the Intensivist to come to us...but it was surgery or nothing!! So the they wanted us to transport Kaitlyn to the OR without bi-pap, as they have no way to power Kaitlyn's equipment for transport. We said..."UMMM NOPE!!!" She is currently ventilator dependant, panics and can't breathe without the vent right now! To put her through that would be insane! We told them that we had back up power for our equipment and if they would leave everything alone once we had it hooked up, then we would arrange to power Kaitlyn's equipment for the time they needed to have her in OR! I am so thankful now that we went with the more expensive equipment when we were purchasing back up battery power! She was able to have uninterrupted running of her vent for the entire time in OR!

Then they told us that we weren't allowed to go into surgery with Kaitlyn. The resident said that that just isn't done and it is NOT allowed! We told her that indeed it is allowed we have been offered in the past to go in the OR with our daughter! She just said, well it's not allowed this time. We said that she couldn't go into OR with an unprotected airway, unless somebody who knows her goes along!!! They finally agreed to let Kaitlyn's chest physiotherapist go in with her to suction and monitor her airway needs! She would also be there for moral support, a familiar face so that Kaitlyn wouldn't panic. We told them NO ANESTHETICS, freezing YES, but nothing that could compromise her respiratory system!! They agreed!

The plan was to place a femoral central line (called a cook line). This is the type of central line that Kaitlyn has always had. The intensivist couldn't get the cook into the vein, it just collapsed! If they had done it a week ago when we first asked them to they might have had more success!! Kaitlyn is under hydrated right now, making any vein tricky to access. They had to call in Kaitlyn's general surgeon to do what they call a cut down. They cut and pull the flesh away to expose veins and then place a PICC line (a really small catheter) into the vein and advance the line up the vein to a more central location within the body. This places the catheter into even larger vessels for less chance that the line will blow or cause any issues! Our surgeon did the cut down in Kaitlyn's left arm. The first cut he made exposed a vein that blew when he accessed it. Then he had to do a second cut down, also in her left arm, this vein he got threaded but could not advance the line all the way centrally. He could only get the line threaded up just past Kaitlyn's shoulder, but he told us that the line was enough central that it would meet all of our needs for this stay! He also told us that Kaitlyn's left arm is now inaccessible for future lines...not really sure why. I will have to have him clarify this for me next week when he's around!

Respiratorily Kaitlyn has been fairly stable today. Got out three BIG plugs, the most awful looking things you'd ever want to see! Great big gobs of stuff! RSV creates really thick, stringy secretions, I had no idea how yucky this virus was. Until you actually see it for yourself, it's hard to imagine! Anyway, we were getting lots of stuff up especially in the morning. Kaitlyn has a vaso-vagal response. It's when the heart rate drops suddenly when we are suctioning. It only goes down 20-30 beats per minute, but I have only ever seen her do this after surgeries when her body has been really stressed out. (Remember this was before Kaitlyn even went to the OR...and she didn't have any general anesthetics or anything that would typically have caused a vaso-vagal response).