Just wanted to let you know how Jenna's day went. This morning we came in, missed rounds again, but later talked to Dr. Chima. So, they were able to get her Morphine drip down to 0.05 and are planning on turning it off before rounds tomorrow. She is back on her regular scheduled doses of Methadone and Ativan for her withdrawl symptoms, which she is doing well on. She was supposed to go later in the afternoon for her upper GI test (to check if her stomach is doing well), but they had an opening early this morning. So, we went down around 9 or so. Dr. Johnson did the test, placed contrast in her stomach and said that everything looked good. He took pictures, no perforations through her stomach were seen at all, which is great. The doctor was very impressed on how well she did in the procedure, but we told him this was a piece of cake for her considering everything that she has been through. He agreed :) So, the plan per GI was to place a NJ tube down, which goes in her small intestines, not her stomach. They wanted to give her stomach a break for 3-4 weeks so that it can heal. However, they still wanted to get nutrition in to her, so hopefully she will tolerate the tube in, so far so good. She has started the feeds in the tube at 5ml per hour, which is about a teaspoon of formula per hour. They are planning on increasing her up 5ml tomorrow and then every 6-8 hours increase her by five, based on how she tolerates it. Justin and I were concerned previously about the tube being placed, but the attending doctor spoke with Dr. Putnam (GI) himself, who stated that he was comfortable with the tube as long as it was not sitting in her stomach and food was being placed directly in her stomach. He wants it to have a chance to heal. He also stated that he is not sure about doing a scope this soon to see how the ulcer is doing, because the test requires air to be placed in her stomach, so that the overall picture of the area is more visable, but this air could cause her stomach to stretch and irritate the ulcer. So they are going to wait. So, we feel better now. Dr. Putnam is out of town or we were going to speak to him ourselves, oh well. Also, they did a "sprint" trial of her being just on the cpap pressure (assistance when she breathes out only) for about 1 1/2 hours and she did great. She was sleeping most of the time, so we did not see her active with the change, but she did well. So tomorrow they are going to let her go on it for 2-3 hours and see how she does. Cross our fingers. So, after the test was done, we came back up stairs and Jenna has basically slept most of the day. I know that it does not sound like a lot of activity (just going down for a test, very simple), but it completely wore her out. So, little miss just needs to get her strength back, which we are working on. Occupational therapy stopped by today with a chair which helps with her strengthening her trunk (chest area) once she is ready. She was too tired for it today, so maybe tomorrow. She has been more awake this evening, which is great. We also were able to be involved in her trach care today, watching them clean the site and understand what is done in the process. Tomorrow will be her first trach change, where they place a new device in place of the original one, this process has to be done every two weeks. So hopefully it will go well. The nurses are talking about fixing her up this evening, nail painting, a special gown and new socks! Mommy is excited! Daddy is hanging out with her now, by bedside, watching Dora and the three little pigs. Daddy and I were able to decorate our new room today, which thrilled everyone because they love looking at her pictures. Maybe I will make more signs, hmmm.... :) With our new room, the "wall of cards" does not look as big, but hopefully we will get more, we love hearing from everyone, it touches us sooo much.
Earlier this afternoon Dr. E her heart surgeon stopped in to check on her. He is pleased with her progress in the last few days. He said that he feels like that she will heal her ulcer now quicker, because she is able to let her stomach rest and receive nutrition as well. Also, he said that he thinks with the trach it will further her progression off of respiratory assistance. He thinks that in just a few weeks she will be completely different. He hopes that she will not go home the trach, but we will see, it is all up to her. We asked about why they are comfortable with her oxygen levels dipping down in the low 80's, which before she was average at home high 80's low 90's. He said that because of her hole in the heart, the blood is expected to mix (oxygen and non oxygen), from her shunting across and going out to her lungs, so it causes her levels to dip. This is normal and do not be alarmed. We told him that her little trip downstairs wore her out and he agreed and said that just minor things are going to wear her out, since she has been through so much. So baby steps, we will get there.
So, overall she did very well today. Good progress and we hope it continues tomorrow. Please keep praying for her and us. Thanks so much for all of the support, it means a lot to us. We will keep you posted.
Love, Jenny, Justin and Jenna