So today went well for Miss Jenna. We arrived on CICU at 6a this morning. We did all of our morning usual with seeing everyone and signing papers. She was taken back to the cath lab around 8am to start her procedures. We spoke with her lung doctor around 9:30a about her bronchoscopy and ML&B, who said that all went well. He said that she looks great and is well on her way to being ready to have her trach pulled in June pending her cap trial. So, we waited most of the day to hear from her ENT team about when her cap trial would begin. We started with a plan of trialing until Friday day and night, but now we are not sure about the plan. We have been told a few scenerios that it may be shorter, but who knows. We are trying to get clarification on the situation now.
Her cath went well. It began around 9 and finished around noon. He said that he was going to attempt to go through her legs again by using an ultrasound machine. If he was not able to then he would go through via her liver. But he was successful and made it through her legs, her artery on the left side and vien on the right. He said that he was able to get one picture from her right side to see how she was doing, which had shown no change. She is still the same as last time, minimal blood flow. We had a lung scan done yesterday, which we are still pending results and will have another tomorrow before we leave the unit. Dr. Beekman said that he mainly worked on her left side( because this is the worse side). He reviewed the area which Dr. E did surgery on in November. To the best he could see, the area is no longer connected and the surgery was unsuccessful. He is disappointed, in which so are we, but we were told it may not work, but it was a shot. And we took it. It did not hurt her, but also did not help her. He went to the area which he had stented previously, the area has two together, which have began to split apart. In between this area, the artery has began to stenos(get smaller) so he was able to go in and place another stent the length of both. He said after doing so, this is the best her bloodflow to the left has looked. He is very happy with that result. He attempted another artery below, but was unable to be successful, it will not stretch at all. He said that he will continue her on aspirin and as long as she is doing well, then she will not return for another cath for 6-12 months depending on her. We will discuss it down the road. Her VSD(hole in the bottom portion) is now almost completely closed, which he said is good and she is tolerating it fine. Her pressures in the right side of her heart are still high(80-norm is less than 25) but at least they have not gone up. Her heart function is decreased, but this is her norm so that is ok. He said that we will just continue to keep monitoring her and help keep her arteries open, but that is pretty much what will be done at this time. There are not any other areas at this point to work on and he wants to maintain what she has at this time. I asked how long her heart could handle her pressures being this high and he said that she could go for decades, but it just depends. The situation is unpredicatable, it is not if, but when will her heart function start to decrease. And this is will be a gradual process, not quick so we will be able to monitor it. We will just keep hoping that she continues to do well and tolerate her cath procedures and that technology keeps getting better in the medical field.
Right now she is resting and doing well. She has not really wanted to wake up at all. They gave her quite a bit of drugs to keep her down and they are actually working! Surprise Surprise! We are just waiting for her to wake up and want to play. All she has wanted is lots of juice when she is awake. Hopefully she will want to eat soon. I will continue to keep everyone posted. Thanks for the love and prayers and support!!
Love, Jenny Justin and Jenna