Monday morning

Well, we're here in Cincinatti, Greg flew in with Emma Kate and Mimi drove up with me and Gretta. It was a long night for everyone, with much anticipation. Emma Kate arrived and got settled in, they really felt like she was doing very well and had good hopes of getting her turned around. I've lost a bit of the progression due to things getting a bit crazy and the hospital internet won't allow posting here, on facebook, or on email, so I haven't documented much yet.

They have a new device here called NAVA which uses a probe inserted into the esophagus down to the diaphragm and senses the nerve impusles from the brain that initiate a breath. This signals the ventilator to help in the breath, instead of the vent working on it's own timing and throwing in random breaths that Emma Kate didn't ask for. They said that a lot of kids who have trouble tolerating the vent like she has do much better with this. They put it in, and she seemed to tolerate it well, especially when she was heavily sedated still but initiating breaths. Sunday most of the issues were having her either "in a coma or doing cartwheels" as the attending doc put it. Every time she gets light and starts waking up the littlest bit, she starts huffing and puffing, really working hard to exhale every time. They were worried that she was spending so much time on exhalation that she may not have sufficient time to inhale, and there are also worries about some air trapping, although her O2 sats and CO2 numbers didn't seem too worrisome.

Sunday evening there was a bit of excitement, she was running a fever. She had gotten a low grade fever at Wake the day before we left, but without any other supporting signs for infection, no antibiotics were started. She was up around 103, so they went ahead and pulled blood cultures, respiratory cultures, and a blood panel. They really don't have an indication of exactly where the infection is. The secretions they're getting from her airway are thin and white, and are getting less and less, and her Xray today looked even better than it did yesterday, so who knows. We should be getting results today for the culture and RSV testing that was done at Wake. So, last night after I left, a lot happened, and I was updated by phone throughout the night. I might have missed some details or not have things exactly right. Sounds like she had another episode of desaturation, that they worked on her and resolved it. She started having issues with poor perfusion to her extremities and her blood pressure was all over the place, so with that and the fever, they deemed her "septic shock" and started her on IV fluids and epinephrine and milrinone. They've gotten her back on antibiotics, I believe vancomycin and gentamycin, maybe one other I can't recall, and they have added Fentanyl back on board for sedation/pain. They are stopping her feeds since her intestines are not likely to work well in this state and having the epinephrine on board, so I think they are starting TPN (IV nutrition). Did I mention they placed a central IJ catheter? They also put in an arterial line so they can have constant BP measurements as well as do arterial blood gas testing. They are planning on removing her NG tube and placing a NJ tube that goes from her nose to her jejunum (farther down into her intestine than before). Then they can feed her through that when she starts working her intestines right again. There were issues with abdominal distention again, and an ultrasound showed ileus, where her intestines are basically not moving much. She did start to have a little diarrhea last night too, so they're doing more testing to make sure she's not working on an intestinal infection. When I came in this morning, she was sedate and appeared stable, but she looks exactly like she did right out of surgery, just as many pumps and meds and tubes and lines, minus the fresh incision of course. This feels like multiple steps backwards from having her at home with just a tube in her nose, and having her up and active, talking, and eating a little.

Today they were successful in getting a PICC line placed (finally, THANK GOD), and it sounds like we're sort of just riding the day out. They don't want to change much since she had such an eventful night. I think they were going to try to stop the epi since she has stabilized and her BP has been reasonable for her state again. Other than that, we're hoping for a quiet , uneventful day.

We're having issues with our daily arrangements- it's much more difficult here than it was at Wake. Greg's brother, Ryan, and his wife Stephanie have come up to help us out for a little while, and we managed to get a room at the Kingsgate Mariott thanks to Greg's sister Heather getting us an amazing rate. We were spending the weekend with Gretta in the PICU waiting room, and someone in with Emma Kate at all times, (they won't allow more than 2 people in her room at a time, and due to seasonal illness restrictions, they won't let Gretta in either) but now today they told us Gretta couldn't even stay in the waiting room. No one has been able to find us a place to camp out for the day with Gretta, other than a lactation room, which wasn't really all that suitable anyway. I was prepared to just set up camp in the cafeteria if I had to. The Ronald McDonald house here is enormous, but it is full. We've been calling in 2 or 3 times a day to see if anyone has moved out, and they're hoping they might have some people leave to go home for Christmas. After finding out that we weren't going to be able to deal with Gretta at the hospital, the social worker did some magic and got the RMH to allow us over to use the common areas even though we don't have a room. It's literally across the street from the hospital, so Gretta can stay over here with someone and I can run back and forth as I am needed. This place is twice as big as the one we stayed in at Wake, and they are so helpful and supportive. This is an awesome solution for us until we actually have a room here, so I feel much better about it all. They're even offering us their kitchen as well- they have 3 meals served daily, as well as access to tons of dry goods, dairy, and leftovers from other meals. The generosity is just unreal.

I've been asked about an address we can be reached at, and I'm not sure right now, since we're sort of in limbo, but we have been told that we can receive things through the mail by having it sent to the hospital in Emma Kate's name. They said not to put a room number because it changes with her status of course. So for now, it's Emma Sazonov, Cincinatti Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, Ohio 45229-3039. I don't guess we can receive anything at RMH until we technically have a room here...

I'll try to keep updating daily as I can get access... Please send your thoughts and prayers for our precious little girl.