Evening of August 5, 2009
This afternoon Jenna's surgeon Dr. E stopped by to discuss her situation. He said that we are going to do a heart cath tomorrow around 11am to obtain diagnostic results on her actual pressures in her heart. He said that he does not feel that they will be doing any type of work on her arteries, but it is possible one may be narrowing off. Once the results are obtained, then the team will discuss the next step. He said that they may discuss tomorrow evening about her or they may conference on Friday afternoon about her situation. He said that if her pressures are in a safe range upon looking at the heart cath, it is possible that we will have to go back in for another open heart surgery. He said that he may have to do a VSD fenestration which means that he will "poke" a hole in a certain area of the heart so that blood can push across to that side if her right side pressures are too high and the blood can go out to her brain and organs safely. It is also possible that he remove the patch he placed completely. He said that he did not want to have to go back in and open the patch, but if possible he will. If he keeps it closed their is a risk that her heart works to hard and eventually goes into failure. If it is opened, then over time it is possible that her good collaterals(arteries in the lungs) will deteriorate over time. So, he wants to obtain the cath first and then make the best decision for Jenna. He said that there is a little fluid in her upper left side of her lung and this may be hindering her oxygen levels. Earlier in the afternoon her oxygen dipped down to the 80's and did not go back up. He is concerned that at some point she may develop pneumonia, because she is at a greater risk due to her condition and being on the vent.He requested that a bronchoscopy be performed to determine if she has mucous plugs (fluid areas in her bronchials of the lungs) which could cause the blood in her lungs not be able to distribute evenly causing her not to breathe out well. These results came back and she actually did have some mucous in both sides, which was pulled out and sent off for cultures. Her oxygen improved also after the test.
We were told before the surgery last week that it could be possible that he would have to go back in someday and open the patch placed. Also, that if she could not remain closed, that there no other options for the situation. He stated these words again today. He was quiet when he spoke to us and said that he has been worried about Jenna since her surgery last week. He is concerned and feels that she is very sick, worse than 24 hours ago. I asked if even if the patch has to be opened, could it be possible that she still have trouble coming off of the ventilator. He said that this is possible. He said that right now her pressures are the same on echo(even on both sides) which is what she was prior to surgery. But again, over time if left open it will "overcook" her heart and damage it. So, he wants to look at both sides and determine the best option. He said that he wants to give us a 100% answer, but can't. Her situation is very limited in what can be done, and is typically just palliative. He is going to speak to us before the cath tomorrow and after to discuss the next step. If surgery is decided it could be as early as Friday of this week or over the weekend or even Monday. We will see.
They placed her PICC line in this evening, which went well. Jenna is currently on a paralytic drip which completely paralyzes her and keeps her still and calm. She has been very quiet most of the evening, her numbers have remained good. She is scheduled for 11 am tomorrow, and we spoke with the Nurse Practitioner and cardiologist about the situation and what they would be doing. He said that it is possible that where the hole if needed to be done would be placed is in an area that if they are able to go back someday, then they can plug it in the cath lab. Not another open heart surgery. So this was a positive thought. The attending is still concerned with her and wants to continue getting fluid off and keeping her comfortable. Her drainage tube is still getting fluid off and she is peeing lots. They are holding her food right now since she is going to the cath lab in the am.
When speaking with her attending doctor about her test results. He told us that he feels that Jenna is "laughing" at him every time he attempts to keep her calm with sedation, he just is appalled at what she has been given and is still pushing through it. He also stated that he feels that Justin and I are exceptional parents, he does not know how we do it. He said that we have been through a lot and just cannot imagine. This made Justin and I feel good, since he is not much of a talker. :) Late this evening Jenna received special visitors-CJ and Sammie which was nice, since it was a surprise! This was nice and comforting. More family will be coming to support us in the next couple of days. We need it. Please keep praying for our baby girl. She is fighting this hard, but needs some help. Justin and I are just trying to process everything and hope and pray that she will move in the right direction soon. My heart is aching so much and I want to cry so much. For those who think I need to let go- I have more than once today. I write this blog to help me deal with the situation. I want to get the story out so everyone will pray and think of her daily. We will keep everyone posted on how things go tomorrow. We just hope things improve soon. Thank you so much for all the love, support, and prayers!
Love, Jenny Justin and Jenna