Sorry for not posting sooner, just been trying to spend time with Jenna and getting rest too. So, Jenna did fine through Monday evening and feeds were started again at 5ml Tuesday Morning. They increased her by two every six hours, which she seemed to tolerate through the day. She made it to 20ml this morning and they stopped, per GI request to give her a break for a day or so. Tomorrow morning they will decide if it is ok to increase again and if so, by 2ml every 6 hours until max feeds of 40ml as she tolerates it. She has gone down on her Methadone and Ativan in the last couple of days, which she has tolerated well. She is still on TPN and Lipids, because she is not at max feeds yet. She has not vomited blood since SUnday, just mostly mucous. However, late last night, she had a bowel movement and it had some blood through it. There was not much there, but they still sent it to lab to confirm and it came back positive. She had another bowel movement later in the night, but no blood. At this point, they are just going to watch to see if 1. anything grows from the sample and 2. if she does it again. So far so good. It is possible that she has just had some irritation in her intestine from having the tube pulled back before. Not sure, her blood levels are completely normal at this point. So, we will see. She has been fine through each blood episode, no fever or vital change. Just being Jenna. Yesterday she played great with OT and PT, very happy and active. Today she did well with Speech, she had sort of learned a new sign "all done" when she is finished doing something. This is good! She loves playing with OT, they have a really cool toy bag she loves! She has been doing pressure support trials this week and done well. Today, they decided to try a mist collar trial, she made it two hours. During the trial, she played with OT and then we went on our first wagon ride in almost 3 weeks! She had fun, it was short lived, but she made it. :) She slept after we got back from 3:30 until 9. So, needless to say, it wore her out. But, we have to try to see what she can handle and obviously, she is still trying to get stronger. Hopefully though with sleeping lots, she will go to bed tonight, unlike last night~ Mommy and Daddy were here until after 2am!!! She wanted to play and we just wanted to sleep. So eventually we just left and she was upset, which made Mommy cry, but within minutes, was asleep after we left. Today it was time to change her trach again, it has been two weeks. They gave her Versed to calm her, which made her sleep for 3 hours, go figure, usually it does nothing to her. I was able to participate today, I took it out and the RT put it in. It was an experience, a different feeling, but I am glad I did it. Yesterday I slept in and Daddy came over to with babygirl. Our fav nurse was with Jenna and decided to prompt daddy to do trach care for the first time and not just hold it. So, yay Daddy!!! He is helping every time now which is awesome, we are trying so hard to work as a team! Another step with Jenna they are wanting to do is a CT Angiogram, which takes pictures of her collateral arteries in her lungs, to give a map for Dr. Beekman and Dr. E for her next surgeries to open the arteries. They are trying to determine her next steps and they would like to do this test before she goes home, so it will be done in the next few weeks. Otherwise, she is doing fine. She has fallen asleep now, I was able to hold her today which was great. We snuggled :) Holistic therapy came by and gave me a neck and back massage, which was AWESOME. I am obviously very tense, and this was much needed. So, we are going to try and get some sleep as well. We will keep you updated on her status. Keep praying and thanks to everyone for everything=donations, cards, calls, emails, etc. We are so blessed to have such a wonderful support group! Miss you all and hope to be home sometime soon. Check out pics of babygirl in the last few weeks.
Love, Jenny, Justin and Jenna
What does this button do?!?!?!?!?!
Of course, Jenna is not looking at the camara. Go figure.
OOOOO....bubbles! Look at my cool cat ears someone mailed me!!!!
Is this how this works? Beauty is very important you know.
Cooking some soup....
Yes, I am holding three stuffed toys, I must keep my friends close. :)