just wanted to write a quick note on Jenna. The past couple of days have gone well. She has been on her car rides, which she loves!!! She is playing in the floor everyday and sitting her chair like a big girl. On Sunday evening after I posted we were told that we may be moving to the TCC in a couple of days, if not the next day. Boy was this a shock, and we were not too pleased. Justin and I have been very tolerant until now, so we showed a different side come Monday morning. We were not told in the right manner about moving to the TCC, it was just said, you are going. So, Monday morning we had a new attending, Dr. Beth Ann :) We have enjoyed having her in the past, so we felt like we could accomplish something with her. Justin and I had felt like that there had been a lack of communication with Jenna's situation, regarding her vomiting and her surgery being scheduled. So, in rounds I spoke up and shared my opinion with the docs (the entire team of about 15-20 people) regarding her care. I let them know that we were told a different story regarding her moving to the TCC, that it would not be until after the G tube was put in. Also, I let her know that she was vomiting more than 1/day, up to 5/day (which is not what the fellow had stated). Then I told her that the previous night Jenna had blood in her stool, which seemed that it was not going to be addressed. She said she understood our concerns and she would speak to us about the plan later together. I told her that this was fine, I just wanted everyone to be on the same page, which is not what we felt was happening. So, later in the day we had a sit down with Dr. Beth Ann about Jenna's goals and plans. Long story short, she said that she was sorry for the communication issue, was glad that we brought it to her attention, and said that she would only let Jenna leave the unit when she was "doing really well", not any moment too soon. So, Jenna had a few more bouts of blood in her stool the next day or two, cultures were sent, which nothing has grown yet. Today was the first of no blood. They said that it is possible that because of her having so many GI issues, bowel issues with pooping, that she could have a tiny tear in her rectal area, because the amount of blood is not a lot and her labs look fine. So, we will see. In reference to her vomiting, it was addressed and she said that it may be possible that there is no answer as to why she is doing it. She said that they have looked at all options and it is possible that it may be just where the tube is in her throat, making her gag, the trach can cause a lot of gagging, plus when she coughs a lot, she gags and vomits. So, it seems to be a combination of things. She hopes that once the G tube is in, it will help. So, we were happy that a least she addressed the situation. So, later in the day we were told that her surgery is set for this Friday at noon for her G tube to be put in. Yesterday evening we spoke with Dr. Catherine about her plan, we have now chosen her as our Intinsivist doctor. THey said they usually assign someone to be the main person with all decisions when their are communication issues, and plus when a lot of teams are involved with the patient's care. So, she said that Dr. Inge would be seeing us soon to discuss if the surgery will be open or laporoscopic. She discussed that once the tube is in, the will wait to start food for 24 hours and then get her back to full feeds. Once she is doing fine they will start bolous feeds, which is where they feed a certain amount through the tube over a period of time and then give her a break for bit and then give more, looking to see if she will tolerate it and eventually get her to the goal. She said that the dietician for cardiac will do a meal plan for her for us to go by. So, we will see. She has played lots the past couple of days, going for rides and getting in the floor. Today we made it to being on the trach mist collar (no support) for 6 hours total, which is great for her! She is definately tired now and is asleep. We met the educator from the TCC yesterday to discuss what it will be like once we go there. She is really nice and feels that they are just going to loooooove Jenna when she comes. I told her that she has that affect on people and will be missed once she leaves this unit. She gave us sheets of everything we will have to learn and sign off on before coming home. She said that they will get private nursing set up for home for us, depending on insurance and availability. Since Jenna will be going home with the vent and trach, we should qualify for up to 16 hours each day. I feel like even though we may have that help, it will still be an adjustment once we go home. Again, there was another party in Jenna's room tonight. Everyone loves to come see her, since she is awake and happy now being herself. So, yesterday we went out for the afternoon. I went to get my hair cut, which was great because they gave me a mini facial and neck massage. It was great! We had a nice dinner together too. :)
So, things have been going well. We are glad that she seems to be getting better, hopefully she will not throw any more curve balls. I can't wait to dress her up for Halloween, she is going to be a fairy. I will take pics so you can see. Well, we are going to head back to the house since she is asleep. Thanks to everyone for everything!!!! Miss you all and we hope to be home soon.
Love, Jenny, Justin and Jenna