August 14, 2009

Still fighting......

Today seemed to go as planned. They were able to get her off of the Dex drip today, which seemed to help in a way. They were thinking that a course of her agitation could have been from this drip which should have helped, but was having a reversal effect. They placed her on a patch to help with withdrawl also. They decided to increase her methadone and ativan scheduled doses because she was still a bit jittery and anxious, which over the course of the day seemed to help. They started a treatment to help "break up" the secretions in her lungs. It is a vibration vest that is used over 15 minutes at a certain rate. They would like to do this every 4 hours with a breathing treatment to help with her lungs. Jenna seems to like it, she just closes her eyes and enjoys it. To me it almost seems like one of the relaxation chairs you sit in that massages your back. They should make these for the parents too. :)
Today they decided to set her up to have a Fluroscopy Picture done of her lungs, which is a video snap shot of her breathing. This is done in the cath lab, but she did not have to have any invasive treatment, just a picture. They were doing this because her right side diaphram was still shorter than her left and they need to determine if it has been damaged. However, the test could not be done because the machine went down. So we are possibly having it done tomorrow. They did do a ultrasound of the lungs to see if any visualization of the area could be seen. It did show that her right side does seem to be paralyzed. They need to do the test tomorrow to see if when she breaths that her left side goes down and her right side goes up, which is paradoxsyl. This is what they want, because it means that the left is compensating for the right. So far in her respiratory status it seems that she is tolerating this area being paralyzed. So at this point, it does not need to be repaired (requiring thoracic surgery-back in the OR). However, if she does have to possibly be re-intubated or if she is not able to get off the respiratory medicines, then they may have to reconsider. They will determine what they are going to do once she has the test performed.
They were finally able to get her off of the Nitric Oxide drip. Throughout the day she was on nasal cannula 12liters high flow, but at the evening rounds they decided to place her back on the Bipap to see if this would help her pulling in her breathing so much. This seemed to help her not to "retract" her chest, which means that you can see her rib cage when she takes a breath. This means that she is working hard to get a breath. She seemed a lot more calm initially. Later in the evening though she seemed to get more agitated than throughout the day, and her ativan dose did not help. When they went to do her vest treatment, they gave her breathing treatment at the same time and it seemed as if she went in to a panic attack. Her oxygen dropped to 31 and she was holding her breath at the same time. So, the treatment was stopped and she was placed back on the bipap machine. She is much calmer now and her oxygen levels are normal again in the 90's.
Because she is going through so much withdrawl, they are having to adjust her medicines quite a bit and stated that they will probably keep her on the bipap machine through the weekend and see on Monday about starting to wean her due to her respiratory status. Most likely she will remain on the withdrawl medicines for a few weeks. The symptoms she is experiencing could go on for a number of days. Besides moving around a lot, she is starting to become very anxious. She is afraid of noises more than before, and too much talking. She is nervous when she is touched in the face or someone is close to her face. So we are trying to keep the stimulation down and keep her calm. This is so hard for us to watch, because we want to help her so much but cannot. I just want to cry because I cannot pick her up and hold her tight and say everything is going to be ok. I just talk to her softly and let her know that we are here. Today we did have progress with her knowing us. She was able to point out daddy and I, wave to me, and try to blow kisses. My heart just melted. Daddy had the opportunity to hold her today, she reached for him, so we moved her over so he could hold her. He was so excited and so was she, because her blood pressure kept going up. :) Hopefully I will get to hold her soon. But it was so nice watching them together. We are taking baby steps, and are hoping to keep moving forward. We will see what tomorrow holds.
Thanks to everyone for so much support, love, prayers and thoughts. We received more cards today, which means so much to us. Also, we had new visitors, Nonny and Pawpaw Cliff came to visit. We enjoyed them being here and more family is coming this weekend. Thanks to everyone for everything.

Love, Jenny, Justin and Jenna


  1. We are still praying for you my heart just breaks that she having such a hard time. We hope and pray that she has a good weekend. God Bless

  2. Keep fighting Miss Jenna! We are all praying for you and pulling for you every minute of every day! Your mommy and daddy needs to get their precious girl home as soon as you are ready. You have amazing parents, but I am sure you know that honey. We are praying for you all. Love Michelle and John Johnson

  3. Jenna is definitely a very strong little girl and a fighter. It puts a smile on our face to know that she is making baby steps. Please know that you are all three in our prayers and we ask God to give you the strength to stay strong and positive!!

    Your Friends,
    Lori, Justin, and Tristan

  4. Hello Jenny, Justin, and Jenna,
    Another strong day is great! How exciting that Justin got to hold Jenna! Enjoy spending time with your family this weekend. We continue to pray for the both of you and Jenna and think of you constantly!

    Brent, Lisa, and Slaton

  5. Yeah, Jenna! Keep on Keeping On! You are such a fighter! Jesus loves you and is watching over you. We are praying for you and mommy and daddy. Thanks, Jenny and Justin, for your continuous updates. It means so much to those of us who cannot be where you are. May God bless and give you strength.
    Jo, Don and Seth Burns

  6. My thoughts continue to be with Jenna and you and Justin. If you guys need anything, you tell Stu and he will let me and/or Nate know.

    Love and prayers...