Sorry that I did not write yesterday evening on how Jenna's day went. It was pretty uneventful. She relaxed for most of the day, just playing some and then resting for a while. She gets tired so quickly after just staying awake for a few minutes. They decreased her milrinone down to 0.25, and if she keeps tolerating it, she will be off of it soon. Hopefully she will and we will not have to go home on any medicine as a substitute. They decreased her methadone dose down a little today to see if she would tolerate it, which so far so good. But they are not going to be too aggressive with decreasing her regiman for withdrawl, because they do not want to move her too fast. Last night through the night she slept well, and they lowered the pressure some on her bipap machine, but again they decided to stop lowering it because they do not want to move too fast and Jenna not be able to tolerate the change. This morning when we came in, she was sitting up in bed watching Noggin, trying to get back to herself. She did well for about 15 minutes, and then she was ready to lay back down. She has rested for most of the day. They have placed her back on her feedings through her tube, which is increasing little by little every couple of hours. We are up to 17ml per hour. So far so good. They have restarted her bowel regiman to make sure that she is able to poop easily, so hopefully with the food and this medicine it will help her get back to normal.
Dr. E. came in yesterday afternoon to let us know that he was able to quickly speak with Dr. Inge about the possibility of doing the thoroscopic surgery on her diaphragm. The surgeon feels that it should not be a problem to do the surgery, but would like to review her data and pictures, and come and discuss what it involves with us first. So, we were told that this surgeon is one of the best in this area of surgery and is a very busy man and most likely he will squeeze her case in at any time. Dr. E. told us to not expect that once this surgery is performed that Jenna will be a new child the next day. He anticipates that she will still have trouble coming off of the Bipap machine, because she requires so much respiratory assistance anyway, especially after all that has happened. He feels that the scope approach for this surgery is best, because of all the pain and recovery which involves the other approach. He said, I don't want to lie to you, this surgery hurts. Which we appreciate his honest approach with the situation. He wants what is best for Jenna and that does not prolong her recovery any longer than needed. He said that Jenna has hit quite a few "hiccups" in this admission, and he does not want to move her too quickly because this will increase her chances of being set back if something bad would happen. He stated that he feels that with this additional surgery and also having to maintain her respiratory status and her withdrawl from the narcotics, he anticipates her being in the ICU for another 1, possibly two weeks. Then we have to go to stepdown for who knows how long. Shewww....I am getting tired and so is Justin. Just as long as our babygirl gets better.
While I was posting this blog, the surgeon Dr. Inge came in to discuss when the surgery would be. He is trying to schedule her as soon as it will allow. He said that the benefits of the surgery for sure outweigh the risks for her. He feels that doing it via scope it is better for her pain control wise, since she is hard to manage. He said that he will make three small incisions on her right side, but she will still have some pain. The length of the surgery typically takes about 1 1/2 hours. If she has adhesions or scar tissue, this typically makes it take longer, but he does not anticipate any. When he performs the plycation, he goes in to the diaphragm and pulls the bottom portion of the area together, making it flat and sutures the area. By doing this, he said it will keep it from moving and allow her lung to expand at its best. Right now he said that what is happening is causing that when she breathes, that side of the diaphragm is working against her, hindering her breathing. He said that the diaphragm is expanding out, like a balloon and psuhing up, and going opposite of the other side, getting in the way. So, he feels that this should help her chances of getting off the bipap sooner, but recovery time from this surgery depends, based on each child. He said that her case is very complex, and is not sure how quickly she will bounce back, but hopes that this will help her not work so hard at breathing. So now he said that he is going to look into his schedule to see when the surgery could be possible. We are just waiting to here. So, once we get a time and date we will let everyone know.
Thanks to everyone for all of the support, love and prayers. Hopefully soon, we will be on our way to recovery, and the walls we keep hitting will go away. Keep praying and will keep you posted.
Love, Jenny, Justin, and Jenna