A Long Day

Yesterday morning after my big kids went off to school I headed to the hospital. I walked in to find Aaron hooked up to the original ventilator he started on at birth, the oscillating machine. I was somewhat annoyed as I had not gotten a phone call regarding the change. Just after arriving Aaron's team came in for rounds. I called Ronny and put him on speaker phone so he could join in as well. The orders were to try to insert another pic-line and go for a double-lumen and if that didn't work to call the surgeons in to put a chest tube straight in (there is a name for this but I can't think of it at the moment). They also added a number of drugs maxing out the pump capacity on two brains and later last night adding a third brain with two more pumps.

I told his team that I was extremely frustrated that things got so bad so quickly and that I felt the three days he went without the heart and lung medication put him on this course of deterioration. I told them I was upset that the cardiologists had not been called in sooner and that they should have been consulted before going without the meds. I also told them that going so long without an echo was unacceptable and that when the plan to do echos every week they need to be scheduled, with or without holidays. I told them I wanted a course of action set in place so that when the doctors and nurse practitioners and nurses change there is still a continuity of care. I told the team that the attitude of "well it could be worse" from the cardiologists who last saw him was unacceptable to me as at this point he is not only worse, he is critical. He is more sick today than he was the day he was born and that I was not ok with that either.

The star nurse who does the pic-lines was on yesterday. She set up her equipment and then stopped and looked at each of us and told us that before she started she wanted us all to say a prayer that things would go smoothly. I told her I could order up prayers and started texting the request out. She did her magic and was able to insert a double line in where really one should never have been able to go. She is amazing! This double pic added to the single and arterial line Aaron already has and allows them only to poke him for blood transfusions.

The cardiologists finally meandered over about 3 in the afternoon yesterday. I think there is some unspoken rule that they must whisper and talk among themselves in secret. I was mighty frustrated when they left the room to chat in the resident corner outside the Room 2 doors as I had told the n.p. that I wanted to be part of the conversation. When they returned I asked if it was better to move Aaron over to Primary's where they could keep a closer eye on him. They said he was too sick to move at this point and that we should just call when we wanted them to see Aaron. I was frustrated at that as that doesn't seem to be happening. I also asked him how often he should be getting echos to check on his progress. He said when Aaron needs it. That really doesn't tell me anything. So after they left I asked to see the Attending and nurse practitioner. I again expressed that this attitude of "when he needs it" doesn't work for me. The reason it doesn't work for me is because the Attending on is only here for two weeks and then goes to a new assignment. Then it takes about a week for the new Attending to get to know Aaron's history, they usually come in and on the first day change several things the previous doctor had ordered and I feel like after a week we start to see if things are working or if they need to be changed, then the doctor leaves and we start all over again. I told him that if there was a set course of action then we could limit some of the changes and delay when the new doctor comes. Then as things need to be tweeked or changed they can see where we are on the course of action and we don't have to start from the beginning again. Dr. Chan agreed with this and we are setting echos to be done every Tuesday that will get scheduled on the computer, regardless of whether its a holiday, and then more often if we feel they are needed. I told him that the cardio guys said to call when we want them there so I said I wanted them called at the very least every other day. They said to call so lets call. I know the Attending is doing all that he can but at this point the more eyes looking at my boy the better. My greatest fear now is that I waited too long to call this conference and demand a plan. They tell me he will get better in a few days, its hard to see him and think he has a few days. He is maxed out on his drugs now and is struggling to keep his blood pressure up.

Even with all the chaos and changes that were made yesterday Aaron is critical. They have started to give him paralytics as he fights the respirator and when they need to do a procedure they need him to remain still. His abdomen is swollen to about 4 times the size it should be and he really looks terrible. A catheter was put in so that they can empty his bladder as the paralitic won't allow him to pee on his own. Most of the fluid is in the tissue though and until it comes out he will remain distended. I know that we don't want him to fight the respirator but a part of me takes comfort in that, it tells me he is still fighting to be here.

I have come to the point that I know we may have to make the call to stop treatment. That terrifies me. What scares me more is that in the effort of trying to save him we are keeping him here longer than he wants to be. As long as I see him fight the machine, I know he wants to be here. I worry that when I am home I may miss the sign that he is done or even worse that he goes while I am not there. Again this juggling act of when to be home and when to be at the hospital becomes even more difficult.