I just wanted to write and let you know that we made it home. The last few days Jenna has improved, her chest xray is starting to clear up, which is good. It turns out that they feel she had a bacterial pneumonia, but nothing grew, so it was considered viral. Plus she had that virus also. When Jenna does it, she does it right. They did test to see if she still has C-diff, which was negative. But I will not be suprised if she develops it again, because of all of the antibiotics. They sent her home on oral antibiotics, so she will have been on them two full weeks when finished. Hopefully this will "kick" this infection. No more hospital visits for now hopefully. She had another echo done on Monday to see how her heart is functioning. We received her results on Tuesday, which showed that she is improving. She is not quite back to where she was in November (her last one) but she is better than last week. Her bloodflow is still going bi-directional (both ways), which is causing her oxygen to dip down. So she is still requiring oxygen continuously, anywhere from 1/8 to 1/4 liter. They want her levels to be a little higher than normal only so her right side heart does not work as hard, they want it to rest. Also, her pressures are still the same, but have improved from last week. So, once this infection clears, she should be ok, her heart will start to relax and not work as hard. Her xray did show an area in her left lower lung, which seems to be a little fluid. The cardiologists says that this typically occurs in heart kids, just an area that will gather fluid when they have infection. They said that it is improving from before. Hopefully when we return in Feb for her follow up with her pulmonologist her xray will look much better. We are set to see her pediatrician later this week for follow up in the hospital, and we are set to see her cardiologist next week, meetings with the nursing company, supply company, etc. SHewwww...lots to do.
When we left the hospital, she was so excited to go home. Everytime I mentioned going home, she kept saying "home, home". I told her that we would be seeing Daddy soon and she was so happy. Needless to say when he came home from work, Mommy was pushed to the backburner and Daddy was the cool one now. That is ok, because I needed a break from being in the hospital so long and they needed Daddy and babygirl time. :) Her scopes which were set for next have been cancelled since she is sick, and will be rescheduled for later in February. They are afraid to do them now, since she has been sick and they do not want to "stir" anything around. Then we will see her heart team in April for another cath.
She has done fine since we have been home. She had a little low grade fever yesterday evening, but we feel that it may have been from her H1N1 shot she got yesterday. She is fine now, just a little clingy, which is to be expected from not feeling 100%. Hopefully she will be back to the old Jenna before you know it. She did start walking again last night which was great to see. One day at a time. I will try to post pics of her soon. Music therapy came and visited her in the hospital while we were there, she loved the guitar! Right now she is watching one of her fav movies, Cars. :) Hopefully the next few days will be quiet, no drama with her. I will keep everyone posted on how she is doing. We appreciate all of the prayers, support, and love from everyone. Thanks again, and as Jenna would say, Bye Bye!
Love, Jenny Justin and Jenna