Today seemed to go ok. This morning in rounds they decided to increase her methadone dose again, since it seemed that a little prior to each dose scheduled, she would very anxious and agitated. So, they thought that this may help. She is still taking Lovenox twice a day via her port in her leg and is on her Milrinone drip for her heart function. Her white blood cell count is down from yesterday, which is good. She should be ending her 7 days of antibiotic today. She is still wearing the Bipap mask, which is helping not work so hard to breathe. During the night they did do another vibration vest treatment and she did well and watched Dora. Since she did improve so much after the few treatments she had (sound wise in her lungs) they decided to make these as needed, based on her lung sound status. Today, she has not required any, which is good. They were able to take her over to the cath lab to do the video picture of her breathing. They stated based on the ultrasound from yesterday, they were not 100% sure the diaphram was not moving. The test was completed and it showed that her left and right was paradoxyl (one goes up while the other goes down), which is not what they wanted. I misunderstood yesterday and thought that this was a good thing. Based on the test, every time she took a breath the left side expanded, and the right just pulled up really high. So high that it almost seemed that it was pulling over to the left. Quick lesson on the purpose of the diaphram-it helps to expand the lungs when breathing, and it one area is not moving then it hinders her from taking a deep breath and then pushing the air out. So, since her right side seems to be paralyzed, then she will have to work double hard to bring air in and push out. Her status and her lung function cannot do that right now, which is why she is on the bipap. Her regular status when not in this situation of her lungs is not 100% like you and I. She only has partial function of her left and better on the right, but this is the area which is damaged. So, the option to help her in this situation is surgery-"tacking" the area down to either a rib or chest wall to keep the side completely open. The area will not ever be healed, but by doing this it will stay still and keep air being able to flow through and balance while the other side pulls in and out. They explained it in the sense of-say you are in a funhouse and the floors are moving all over the place, but you are wanting to stand still to balance them out. By tacking this side of her diaphram in place, it keeps down so that when the left moves it can do the work and compensate-rather than letting the right flip flop all over the place and not sit still. So, at this point the attending doctor is recommending that she have the surgery done, so she will benefit in the long run. They feel that she will have trouble possibly coming off of bipap since she works so hard just on high flow nasal cannula and we cannot live on bipap forever. So, she spoke with Dr. Eghtesady who would perform the surgery and he is going to come in Monday and review all the data from today's test. He will make his decision from there. He hopes to let her rest a few days this weekend and maybe she will improve to possibly not have to do the surgery-but he is leaning to doing it since her lung function is not 100%. The attending stated that Jenna is not in distress at this point, so we can wait a few days to do the surgery if that is the decision. So, we will know for sure if he is going to do it sometime Monday. The surgery consists of him having to go through her side to get to the damaged area, but is very quick to repair. So, they area going to have to re-intubate her, but hope that if possible she will not be on it very long and she will be able to tolerate removing the tube almost immediately after surgery and not have to place her on any sedation. This is the goal, we will see. She is much more aware at this point, and they hope that she will able to come off of it better. Justin and I feel that this is best for her (surgery), we just want her to heal and get better enough to go home and we feel that this will help. But it is Dr. E's call. So we will see. The surgery will set her back a couple of days, but they hope it will help transition her off the bipap sooner and able to move forward.
Tonight she has done ok. She was calm at first when we returned from dinner, but then woke up crying. This is the first time she has expressed this emotion. I asked her if she was in pain or uncomfortable and she shook her head yes. So, I informed the nurse and he gave Tylenol and these seems to have calmed her. She is resting now. The nurse stated that she is more emotional right now also because this is a part of the withdrawl process-her emotions being off and she is old enough for this to happen. So it breaks my heart to see her in pain, I just try to tell her that it will be ok and to go "sleepies", mommy and daddy are right here. So, hopefully she will have a good night.
Today she had some visitors-Nonny and Pawpaw Cliff again, but also MeMe and Pawpaw and Aunt Missy. We are trying to limit the length of time people come to visit, since she becomes overstimulated with lots of noise and sounds. So, these seems to help her and we have music playing to help her keep calm. We received lots of cards and packages today, which was great. It means so much to us. Thank you to everyone. Please keep praying for babygirl and we will keep you posted on the status of possible surgery Monday.
Love, Jenny, Justin and Jenna