Care Conference

Last Monday we had a Care Conference with a lot of the key players involved in Aria's care.  So we met with the attending doctor, the nurse practitioner, our primary nurse Jamie, our social worker, and a couple members of the palliative (hospice) care team.  Our main purpose in meeting with them was to make sure that we had a clear understanding of her condition and what that would mean for her future. We had been in kind of a "holding pattern" as one of the nurses put it for a couple weeks.  Aria would have good days and bad days but overall wasn't really progressing in any meaningful way.  Everyone was still really careful to use the word "if" when we would ask questions about possibly taking her home someday.  It just didn't seem like there was any real plan that we knew about, basically the hospital was just treating problems as they arose and that was it.  I was starting to get concerned that we may be extending her life in ways that weren't best for her.  Since we had expected her to pass away the night she was born, we had a fairly realistic knowledge of how bad her prognosis was and doctors had mentioned the whole "Quality of Life" thing right from the beginning, so it was something that had always been on our minds.  We knew it wasn't a matter of if she'd make it or not - it was a matter of when her problems would take her from this life, because we knew that even if she came home someday she would not last long.  With that in mind, we wanted to have this discussion with Aria's team because we wanted to make sure that we were doing the best thing for Aria.  We wanted to make sure that when she passed she would be comfortable, and that it wouldn't happen in some traumatic unforeseen way.

We hadn't really said anything to each other yet in regards to what the future may or may not hold for her, but at the end of July I just started feeling like we needed to have a plan of some kind.  After all, she was a month old at the end of the month but still had no idea what was happening. Especially when she got that infection and we were worried that might be what took her. So I started asking some questions to the neonatal nurse practitioner one day and that prompted the Care Conference.  Our main purpose was to determine if they thought she had any chance of a life worth living, basically.  If yes, then we wanted to get a plan into place so we could get her home as soon as possible.  If not, then we needed to discuss moving from a "fix all problems" treatment to just comfort care.  I knew that the hospital's job was to FIX, whether or not it was the best thing for her, and that we would have to actually tell them otherwise in order for them to have the permission they needed.

Going into the Conference, we were both pretty conflicted about what was supposed to happen.  When Aria was first born and we thought she was going to pass away that night, we both felt very strongly that even though that was horrible, that was what was supposed to happen and that she wasn't meant to last in this life.  So the fact that it was a month later and she was still with us was very confusing. . .did we misunderstand what we had felt?  Or was that true at that time, but now things had changed?  Were we now to take her home and take care of her?  We just didn't know anymore.  In preparation, we went to the Jordan River temple.  The question I kept praying for answers for was basically - is this still supposed to be a hospice situation, or should we instead do everything we can to extend her life for as long as possible?  The temple was great (I felt so guilty though because we hadn't been there at all during my pregnancy since I was so sick).  Coming out of it, we were still conflicted, but both felt very at peace, and felt that the big answer was that no matter what happens it would be okay.  We had gone to the temple in the evening and had planned to drive to the hospital afterward for a late night visit.  As we were driving we were discussing what we were feeling, and Mike was starting to say that maybe we should look at going ahead with the surgeries she needed so that we could bring her home.  Right then I got a call on my phone from the hospital saying she was sick with an infection and had problems breathing and that they were concerned about her being strong enough to fight it.  So we rushed to the hospital and stayed with her late into the night until we felt like she was more comfortable.

Driving home we mused over the timing of this acute sickness, but weren't sure how much we should read into it.  After all, even healthy people get infections every so often, right?  So we planned to keep moving forward with trying to figure out what was best.  That weekend was Fast Sunday and we asked our extended families to participate in a family fast for Aria, specifically to help us know what God's plan was for her and that we would know more clearly how to proceed.  I don't know about Michael, but all during my fast I was praying and telling Heavenly Father that while we felt at peace about things, we still didn't know what we were supposed to do, and could he please make it blatantly obvious so that I wouldn't go through life doubting myself either way?

The Care Conference was the next day.  The attending doctor began by giving a medical summary of her life up until now to make sure everyone in the room was on the same page.  Then he gave us his best prediction for what her life would look like going forward.  I remember he started out by saying "at any rate, we would expect her to have a very difficult life."  He stated that he believed she would always need to be dependent on some kind of breathing device as well as always being dependent on a feeding tube.  He didn't expect her to ever walk or even sit up due to her skeletal and muscular problems.  Her brain function, because of the calcifications, would be severely limited (as it has been explained to us, the major factor is that her brain is not conveying commands to the rest of her body).  She would require multiple surgeries in her life, the first set of which would be required in order to even take her home (a tracheotomy and a gtube for food).  He also said that she would likely have multiple hospitalizations throughout her life.  She would likely always be on multiple medications.  They would not expect her to live more than a couple years, or past early childhood at the latest.  What would ultimately kill her would be the same things that would cause the hospitalizations through her life - pneumonia due to her breathing problems, blood pressure issues, or seizures that we would be unable to control through medication alone, just to name the big ones.  At some point in her life he expected that home care may not be sufficient and that she would need to be moved into some type of long term care facility.

Well.

That was obvious.

Mike and I just kind of looked at each other for a second, and I could tell that he realized too the direction that this discussion now needed to take.  So we began asking questions about hospice care.  Basically there are two choices - hospice at home, or hospice in the hospital.  We both felt that we wanted to take her home if possible.  We wanted to be able to just hold her all day, every day, at home surrounded by her family.  However, there are some significant barriers to taking her home.  She is not allowed to leave the hospital on her ventilator.  So we would either need to have a tracheotomy done, or she would need to get to the point where we could try high-flow nose tubes instead.  If she required a tracheotomy she would also require a g-tube surgically put into her stomach for food.  Mike and I were both in agreement that we didn't want to put her through any surgeries just for the sake of having her an extra few weeks, or however long of a time they bought us.  So we were hoping that once she fully recovered from her infection we could try nose tubes again and if she did well then we would take her home on hospice care.

Since then we've just kind of been watching and waiting.  In the meantime we have been having several meetings with the hospice group to better define what our goals are for Aria as we move in this direction, and for them to help us understand what to expect, no matter if we take her home or if she stays in the hospital until the end.