So I am a little behind with the updates. This time for a very good reason. Days 8 and 9 have been great for C. She is finally turning the proverbial corner and moving forward faster than moving backward.
Thursday - Day 8
Finally I get to hold C! Her bed needed to be changed and I got to her room just in time to hold her while tha was bein done. Of course I held on to her for quite awhile. I even refused to put her back on the bed when the eeg tech came to remove the eeg leads from her head. I told her we would move the bed a little so she could get to C's head and I did not care one whit if she got the remover solution on my shirt. Leads came off, C fell asleep (a real sleep...you know the ones I am talking about), and the neurologist came in. He said the second 24 hour eeg looked the same as the first one she had. He said he was still seeing the crazy patterns on the eeg when she was woken up, hyperventilated or was messed with. He still wanted the ct angiogram done so he could see her brain structure and where blood and oxygen are going. She was suppossed to have that this morning but ended up gettin postponed until Friday because after our very awesome nurse called and talked to ct several times beginning at 7am, in all the times she spoke wit them trying to get clear instruction, noone told her C would need to be heavily sedated. Um, yeah. So, our nurse was super pissed because she had everything ready, everybody ready and then at noon, they tell her about the sedation thing. She had already planned to have the NP here give a small hit of versed to keep C calm and then she and the NP would be with C the whole time, We are allowed to go with her and stay all the way to the actual machine running so th would stay through that. But, the kind of sedation ct was requiring meant the intensivist doctor would need to do the sedation and would need to stay with C. Two problems, the intensivist had told us just an hour earlier on rounds that we could go ahead and feed her. She wanted C feed and with fluids, getting her back to her normal. So, we fed her..therefore, she could not safely have sedation for at least 4 hours. That woud push the test time to around 5pm and noone wanted to do that. Second, the intensivist was not available. She had already moved on to the other patients she needed to see. So, our awesome nurse reset the ct angio for Friday morning, after really giving the ct tech what for, as she should. Everybody has C's back here. Rounds were actually fine. This day th whole group, including C's surgeon, was present. Does not happen like that every day. Some days you will see the doctors individually. Anyway, told us C would be on 7 day course of antibiotics because blood showing infection markers and with no spleen, noone wants to risk C getting sick. At this point, she still has several lines in including: arterial line in groin, two chest tubes, trans thoracic line, pacer wires and her pic line. Still, leaving iv drips on but cutting back on amount a little more...this is amiodarone (arrhythmia drug) and milrinone (heart function drug). Chest tubes still draining so those stay. Pacer turned down a little more just to catch C's heart if she goes too low, like during sleep. Oxygen wean is on hardcore since she has done well with no nitric. She was dropped from 8 liter flow to 6 liter flow. But of course the down side is still her lower oxygen saturations. She was put on he cath conference Monday so the whole team can talk and decide what to do. C had a relatively stable night, slept well and was pretty happy going into day 9.
Friday - Day 9
So I get to C right as they are getting ready to go to ct angio. We have another of our favorite nurses and I am so happy. Plus, the decision was made to have the pediatric cardiac anesthesiologist come and sedate C and stay with her the whole time. The intensivist was being super cautious because of the seizures and meds she is on for that and th arrhythmias ad the meds she is on for that. So awesome she is so complicated but I was so very grateful that the anesthesiologist agred to do this for such a small thing. C sailed right through the whole thing and popped right back from the sedation. My husband and were so grateful. The cardiologist on this week came in and said the last 24 hours have been the best for C since surgery. Finally, 9 days after this nightmare began, C is leveling out. I felt kind of bad for this cardiologist becaus I think he thought he was always giving us bad news, so when the ct from Wednesday came back clean, he was practically giddy to give us the news. Then when the echo came back with great function he practically ran into the room with the news. I am pretty sure he was so happy to end the week on an upswing. Of course we are super happy C is finally coming around. Today she was awake most of the day. I got to hold her again and we ate yogurt. She is back on full feeds of the food we make and she is gettin her apple juice/Gatorade mix. We watched movies, played games and did more of our normal stuff. C is able to move around more because the intensivist won out and she had C's arterial line removed. Plan still same, wean, wean, wean and feed. CT angio came back with radiologist report of unremarkable...meaning C's brain is just fine. Blood and oxygen going where they need to, structur is good and there is no evidence of clot, annuerism or stroke. Awesome news. C is down to 4 liter flow and staying steady. Only negativity is the possibl cath next week hanging over our heads. We obviously would prefer to wait it out a little longer and see what she does. She is she can apapt at home and have her sats come up. Everything else is pretty much the same. She still has iv meds and still has pacer attached even though rate is super low, just to catch if she goes too low. The very best thing of all, the last two nights I have been able to lay with C and get her to sleep. She is going to be so spoiled but honestly, I don't care if she wants to sleep in my bed every night at home, she can.