Friday Night Midnight

Tonight we met Alex - the Friday night shift RN. A British RN who will be Andie's RN all weekend until Monday. He made us feel like royalty with his accent. Alex had the job of replacing all the pumps and lines on the tree of life as his first duty of the evening. I watched him from our corner of the room. Like an electrician installing a circuit breaker box, Alex found 10 new pumps and loaded them up with the proper medications, ran his cables to a receptacle on a power strip and routed all new hoses, ready to connect to Andie's IV's.

He wheels the new tree of life over to Andie's bed, which he now has her propped up by tilting her bed, and started to hook all the new hoses to her little limbs. While Alex was doing his work, he and I discussed the goal for Andie tonight on his shift.

At this point Andie is looking very stable. They have increased her Flolan to 15 from 10 to help her loosen up her vessels in her lungs. Besides that, she's looking the best she has since we brought her home. She's still swollen and puffy looking, blood in certain areas where they have replaced needles or added something, but mainly she looks so small and peaceful laying on a soft pink and brown blanket.

Her stats look really good. Her SAT has been in the mid 80% to the mid 90% range. I even saw it go to 98 and hold there for some time tonight. Her goals for tonight are to remain stable and start weening from the epinephrine she's on. The same medication used for Bee Sting allergies. Epinephrine is used to boost blood pressure. If you ever see Brooke - ask her about the time she stuck herself with Boston's EPI pen. Full adrenaline. The funny thing about epinephrine is one of the side effects is Pulmany Hypertension.

When I heard this, I started to scratch my head wondering why they would be giving her this if we're trying to cure her of it. I guess it's one of those things you just don't ask. But we did anyway. They used it to boost her blood pressure from the side effect of the Flolan which slow downs blood pressure. So tonight they are going to ween her from the epinephrine over the next 10 hours. So they'll take it down and watch her. If she does well, then they'll do it again in 2 hours, and so forth until it's all out of her system.

So we are praying that Andie will be able to be weened from the epinephrine, keep her stats the same, and maybe increase her SAT.

On another note, they are watching Andie's right lung for they believe it is starting to collapse. A normal event from PPHN and laying flat on your back. They have moved her around side to side. A shift change later and Alex is reporting that her lung sounds like it has inflated back, but we're keeping an ear on it to make sure it stays inflated.

It's almost 1:00 AM and the respiratory tech came to suction Andie as I lay here writing an update. As she completed her work I ask her if she's all done and all is ok. She replies yes and says "her eyes are wide open, she's awake". Brooke wakes up from a dead sleep and both her and I dart over to Andie's side to talk to her. What a joy it is to look at her and have her respond with her eyes in the direction of our voice. She looks around as we make baby talk to her and enjoying the time we have with her. She has her breathing tube still placed in her mouth running down her throat inflating her lungs. She has a drain tube that enters her left nostril and runs to her stomach. But even with all the tubes in and out of her, she still looks at us with love and anticipation of us able to hold her.

We continue to talk and touch her for about 30 minutes watching her stats. They are still strong. Her SAT is in the low 90's and holding. Her vein pressure is rising while her stress is staying down. Even after her suction treatment from the respiratory tech, she didn't get stressed out and lower her stats. Maybe we got the formula down now., but in reality we're trying to keep our hopes realistic and optimistic. And even with Andie sucking on her breathing tube, she looks at us with the thumbs up sign. We are keeping our fingers crossed.

Lets hope tht Saturday brings us a day of weening Andie successfully off another medication or two and keeping her stats where they're supposed to be, so we can start preparing on getting her over the hump and able to return her home quickly.

Duane