So as the story goes...our actual pediatrician left Kaiser, and we were in need of another. This was okay by us, as we were going to need to find another had she stayed anyway. She was really rigid and not open to suggestion. After the accident, my mom and I had taken Aviana for an appointment and she had said something so outrageously rude to my mom. I swear you all would have teamed up and plowed her over. My poor mom, I felt awful. Saying it to me, that's one thing. Taking your own aggression out on my mom for no good reason, especially after all she had just recently been through, well now we have a problem. I think she was on her way out and really just didn't care. It was time to move on anyway, but you know what an ordeal finding a new doctor can be. On top of that, when the time finally came to actually find another - I was shell-shocked so I just wasn't looking forward to it!
I eventually just picked one who looked good, hoped for the best and called it a day. I was actually dreading the appointment because I knew the content was going to be about something I wasn't comfortable talking to a brand new doctor on our first meeting about. My mom went with me, because at one point I wanted her to wheel Aviana out and walk the halls - for both of them...
But how did I arrive at the pediatrician office...do you remember the game Frogger? I'm going to jump back for a second. I know, I've got hops! You should see what my mind has been like for the past month!! I swear this is concise!!
Just follow me, I promise you won't get lost...maybe ; )
As I've said, after what happened last year - we knew we needed further guidance - from people who understood what we were going through. We needed a group who we could talk to, people who would empathize. Those who would be able to help us with our goal for Aviana, that being comfort above all else.
At first I did nothing. Then, I began my search for something of this sort. Who? Where are these sorts of people? Who could help us? Who could be of service to us and for us? Searching, searching, searching and then, there it was - there they were. I had never heard of them. I didn't even know they existed. As I read, I wondered. How could we have had a child like this for so long...made our ultimate wishes known to so many, for so long, and not one single person had uttered these words to us? Are they a secret? Are they another dirty little secret that no one wants to talk about?
Have you heard these words? I searched further and wouldn't you know it, Kaiser has their very own program. The very place where this failed liver biopsy went down...there's a Palliative Care Service Program. Had I been privy, they could have helped us! They could have been by our side to help decipher what was going on last year. Maybe everything would be as it is now, but who knows? I wish they had been included in that family meeting!! I knew I needed to get in first with that pediatrician and then with this department. This way, in the future...my promise to Aviana would be that - a promise.
First things first. For those who have never heard of it -
Affirms life and regards dying as a normal process
Neither hastens nor postpones death
Provides the relief from pain and other distressing symptoms
Integrates the psychological and spiritual aspects of care
Offers a support system to help members live as actively as possible until death
Offers a support system to help the family cope during the member's illness and in their own bereavement
- fully understand your illness and treatment choices.
- improve your comfort, strength, and well-being. This includes relief from pain, loss of appetite.
- ensure that all of us at Kaiser know your goals for how you want to live, given that you may have some chronic problems to live with.
- develop a plan for your future personal needs and care so that every member of the care team, including your family, understands and respects your wishes.
- complete an advance health care directive so that your family and medical team work as partners to support you, should you become unable to speak for yourself.
My gosh though, going to a new pediatrician, talking about this, ugh! I felt sick to my stomach before I left. As hard as it is, we know it's the right thing for our family. Palliative and Hospice have a lot of similarities and some differences - one thing that is always kept at the forefront with both is the patient, and what the patient would want. So...most importantly, it's the right thing for Aviana. If she could speak, she would want this and that is what pushes me/us through. I'm telling you though, this is the single hardest thing we have had to do since the accident!!!!!!!!!!!!!! It's hard to put yourselves aside and do what's best for her. It's hard to ultimately separate the two. Like I said, it's amazing what you can get used to, and Dave and I have honestly gotten quite used to this; more than I ever thought we would. It's really hard in one way - because we love her, and really peaceful in another - because we love her. Dichotomy - to the end.
Hippity Hop, I don't stop.
Back to the pediatrician : )
Someone was looking over me. The new pediatrician was heaven. He was a dream come true. He was gentle and loving. He was perfect with Aviana and my mom. After I sent the kids on their way ; ) I talked to him about the difficult stuff. I, of course, cried like the baby I am. Our new doctor was as sweet as sweet could be. He said he has never had to deal with Palliative and didn't know anything about it, but he would make sure to find out everything he could and point us in the right direction. He sent nice emails, and followed up on everything he said he would. He was just what I so desperately needed.
We next had our Palliative meeting. I wasn't nervous this time, because I knew these people were there to help us, to guide us. I did however know it was going to be really hard to hear the words falling from others' mouths. You know how it's one thing when you talk amongst yourselves, but a whole other story when it comes from the lips of another? I had a feeling that would be my biggest challenge, that and the fact that it would feel all too real.
Kaiser offices are usually so opened and inviting. This one was truly at the end of the road. It was on the 4th floor at the end of the hall, and recessed. We had to knock on the door and wait to be let in, so un-Kaiser-like. It felt kind of gangster. We were laughing in our own - laugh when things are truly heavy - fashion. As I was retelling the story to my Uncle, he was joking - did they ask, "what's the secret password?" In a whisper..."Palliative." We have to, or our heads would have blown off long ago!
The doctor and social worker were amazing. They had read all about us before we arrived, but asked about everything anyway. We explained how we felt in the beginning about quality, our journey through recovery, her liver, and how now all we want is for her to be as happy and comfortable as possible. We explained what happened the previous year and how we don't want her to suffer anymore. Above all, we don't want anymore pain as she has seen far too much in her short life. They agreed and said they will help us with our goal every step of the way. They will be there to help us with decisions as to if ways of her passing are comfortable and peaceful, etc. I don't want any of you to think anything is happening right now, but they will be there for us as things come up.
We talked for a while and at the end, they asked how we felt it went. I cried. I told them I thought it went great. We talk as a family about keeping her comfortable and happy, and out of painful situations but we've always felt there isn't much we can do other than what we already have by way of Kaiser, etc. I explained that knowing they are there for us, and having a resource in them makes me feel good and confident moving forward. I wish I'd known about them years ago, I would have definitely sought them out.
The meeting was hard, harder than I thought it would be. This kind of stuff sticks with you after returning home and thereafter. I just have to remember one thing though - as long as we follow Aviana's lead we will always be ok.