Today has been a good day. Jenna has made strides today, but still taking baby steps. She was off the Nitric Oxide once we came in this am and has stayed off for over 18 hours now, yeah!! They pulled her pigtail chest tube out this morning, which she did well with. We were told yesterday evening that they were going to stop her paralytic medication today, which made us a little nervous. But today, the attending came in and explained the plan for Jenna this week. She informed us that Jenna is currently very high doses of sedation and narcotics, her doses are set at adult levels. That is a lot for such a little girl. So, the plan is to start decreasing her doses at this point-be off by tomorrow evening, and then begin her on the Propofol medication to paralyze her and wake her on Thursday and extubate (take her off the vent). She said that they are concerned with the effects that all these medications are going to have on her over time, and also they are out of options of medications to give her to be sedated. She said that of course, if over the next 24-36 hours that Jenna is not tolerating coming off of the medications, they will re-evaluate the plan. They have placed her on an Ativan drip for anxiety to keep her calm. The dex drip has been stopped, along with the Versed drip. They have kept her off of the diuretic drip because she was peeing too much which would mess up her electrolyte levels. She has been taken off the heparin drip and moved to Lovenox injections twice a day. A port was placed under her skin so that she does not have to be stuck through the skin with a needle every time. This is in her leg. Now that she is off the dex, her body is moving more and due to the amounts of medications she is on, she is now starting to have what they call "the shakes" from the high doses of medicines. She has not started to experience withdrawl yet because she is still on the medications, but they have increased her methadone so we can prevent that from occuring. So, currently she is just on the ativan drip, morphine, and milrinone(which helps to keep blood pumping out better to the body, so her heart does not work as hard), and her antibiotic. She has began her feeds again slowly, since she has not had a bowel movement in 13 days and increased her regiman so that this can happen soon. Her little belly is popped out from gas and not pooping so hopefully this will happen soon. Still on the TPN and lipids as well. They will start weaning her vent down once she is off all of the drips tomorrow evening and hopefully this will go well. We told the attending we are just concerned about how well she will do and hope that she does not pull the tube out before she should. She said that they are too and are watching her. She said that typically they do not do Ativan drips, but this is a last resort to keep Jenna calm for a couple more days before she is taken off the vent. At this point she has been on the Dex as long as it is safe for her and needed to be off. So, she has tolerated everything really well today, only jumped around some, and Justin and I are able to calm her by holding her hand and talking to her and she goes to sleep again. So this is good, since before this did not even work. Also, before she was tolerating being taken down off everything, but seems to be doing ok right now. Her blood pressures still jump up and down, but they said that this would occur because of all thw work done on her right side of the heart. She has also been taken off of the Bucentin and decreased by half on the dose of Viagra, because at this point they do not think that what was occuring was a true pulmonary hypertensive situation, so she does not need to be on the medication. So far so good. The plan for the night is to stay quiet and calm. No new changes, they may give her a little Lasix if needed for fluid to come off, but she looks a lot less puffy today since they gave her some last night and this morning. So, Justin and I feel more comfortable after talking with the attending doctor, since she explained the full situation and helped us understand why we more moving forward more quickly than we thought was ok. She said that they want to make that over time she will not have any issues with all of the medicines. She reassured us more than once that if in the next day or so that Jenna does not tolerate the changes, then they will for sure make adjusts to the plan. This made us feel better, we just do not want her to be pushed, which she agreed. She feels that Jenna has done really well in the past two days, which is good. She said that these are lots of little changes, but to Jenna are big, since she does not always tolerate small adjustments. So, she has done well so far and we will keep hoping that she moves forward. Please keep thinking and praying for her and us. Thanks to everyone for everything-prayers, support, love and thoughts. We will keep you posted on her status.
Love, Jenny Justin and Jenna