Just wanted to give you a quick update on she is doing. First, her tests yesterday went very well. She was a little upset during her lung scan, only because she did not want to be stuck by a needle (who can blame her). But we sailed on through and made it to the zoo in the afternoon. She had a great time, and wore Mommy and Daddy out in the process. Trying to keep up with a three year old-attached to oxygen along with her stroller in that space is not an easy thing. But we enjoyed it. Last night we went in for her sleep study around 6:05 pm. We had dinner, checked in with the nurses and staff and settled. Around 9p the respiratory therapist came in and connected her to the lovely wires that they use (on her head, face, chest, and legs). She was not a happy camper once this was finished. But this just made it easier for her to sleep since she was so worn out. So, one parent had to stay with her, which was me and daddy headed back over to the hotel. This morning started early around 6a by finishing up the test and removing all the wires. She did fine and did not have to be put on the vent throughout the entire time. I spoke with the tech about possibly getting a small amount of results, but no luck. She said that we will have to wait until our followup with the pulmonologist which is in May. Arrrrgggg...hopefully we will have good results and we will begin to wean her ventilator down while sleeping. We will see.
So we made our way down to A6 central to check in for her cath @ 8:30a, start time was to be 10:30. Jenna was wanting to run up and down the halls, watch tv, play with her toys and touch everything! She is a wear out! In this whole process she wanted to get off the bed and she slide off and popped her G tube out of her stomach. Nice. We were already planning on changing it during her cath, because it has been acting funny, but Jenna decided that she wanted to do it herself. Only problem is that we attempted to get a new one in at the time and had no success, the practitioner in the OR is attempting to put a new one in, but has been having issues, hopefully she will get it in. Around 11a we went back for her cath, helped put her to sleep and gave our kisses and love to her. The cardiologist began shortly after and attempted for some time to gain access to her heart via her leg. Since Jenna cannot have anything done in her right leg, this limits his choices for where to go, possibly via her liver. So, this is her seventh cath and he said that it was possible at some point he may have issues going in. Finally after about 45 minutes he was able to get in, shewwww...So, now that they are in they are going to see what is going on. He told us before the cath that since this is the first one since she had her work done last year, he did not know what really to expect. He was prepared for anything-stretching her arteries, stenting, etc. He does not know what side he is going to side (right or left) and to what extent. Ok-well the practitioner just came in and gave an update. So, he took pictures and looked around-called her heart surgeon to review her case together and they decided that her left side would be best to work on now. So we will wait and see what he is going to do. Ballooning her arteries will most likely be done. We will see.
I will update everyone later this evening on her status. Sorry I am just now getting to post on her status. Thanks everyone in advance for the prayers and thoughts. So far, she has not given them any problems, she is sailing through. Hopefully she will not give them any other problems. We will keep you posted.
Love, Jenny, Justin and Jenna