Getting clear information about the options
Asking questions is part of your job as the parent. When your child has a complex medical situation, it can be hard to get all the information you want.
You can listen to two different family experiences below.
Kiana: I just wish the doctors had been on the same page sooner. There were just so many people telling us different things and giving us information – doctors, nurses, therapists, social workers… oh my goodness, so many people! I understand you need the facts but when you are hearing one thing from pulmonary, and one thing from the PICU, another thing about his brain, another about his feeding, another about his scoliosis… you just don’t know who to believe.
I have to say, I am so glad I had the palliative care team there when we were making the decision about the trach and vent for Devin. Once I learned that I could ask all of the doctors to come to a meeting with me, so I could hear from all of them at once and we can make a decision together…that was much better. If that had happened sooner, maybe I would have decided to go for the trach earlier!
The palliative care team really helped me and Devin’s other doctors figure out what was best for Devin, and for me too. I also talked with my sister, since she was gonna be helping me take care of Devin sometimes. I wished I could have talked to other parents who really knew what it would be like to have the vent at home, but that didn’t work out.
At the end of the day, the doctors said that they weren’t sure if the vent would be permanent, or if he would just need it for a year or two. Well, if there was any chance that he might get better and not even need it down the road, we were going to try it for Devin. So, I pushed for it. I mean, even though now the doctors say the trach and vent are probably going to be permanent, I’m still happy with the decision.
Morgan: When we went for that first ultrasound, I could tell something was wrong right away from the look on the nurse’s face. We were so happy to be pregnant…we weren’t expecting that.
Matt: After some more tests, we found out that our daughter, Ashley, had a rare genetic condition. The doctors said Ashley would probably die before her first birthday, that many of her organs would ultimately fail and she would have trouble breathing.
Morgan: We cried a lot. We kept thinking that there must be a solution. But the doctors said that, because of her underlying genetic problems, that a trach and vent wouldn’t improve Ashley’s other problems. It wouldn’t prevent her from dying.
Matt: A part of me wanted them to try everything that could help. I didn’t know how to think about the alternative. At first it was hard for us to talk about it, but I realized it would be selfish to try to keep Ashley with us if it would only mean she would be suffering.
Morgan: A nurse told us about hospice for babies, that it could help Ashley be home with us for as long as possible. So, we brought Ashley home with us when she was seven days old. The hospice folks were there, and our parents, Matt’s sisters, our friends. We had a huge coming home party!
Matt: We spent three amazing months at home with Ashley before she started to have trouble breathing. We brought her back to the hospital to see if anything simple could help. We tried oxygen, medication…nothing helped. The doctors believed that a trach and vent might keep her alive a little while longer, but they couldn’t say how much longer.
Morgan: It was so hard to say "no" to a vent, because of course we wanted Ashley to be with us forever. But being in the hospital, on machines…we knew it was not really living. We wanted to take our daughter home.