After meeting with our new palliative care doctor, we got a bunch of stuff in the mail today.
It’s so good!
Their mission statement is:
To provide compassionate family-centered care to children of all ages facing complex, chronic, or potentially life-threatening conditions while supporting and educating caregivers. The team will advocate to promote quality of life, enhance comfort, alleviate suffering, and foster coordination of care.
How awesome does that sound?
Their role is to:
- help children and their families on the journey through complex and chronic illness;
- help children and their families as they face serious health concerns, chronic illness, and/or long hospital stays;
- works to improve quality of life by reducing pain and troubling symptoms and giving patients a chance to grow, personally and spiritually;
- allows for better communication among caregivers (doctors, nurses, and specialists);
- help children and their families make difficult medical choices;
- assist with relief of pain and discomfort;
- review and explain medical information;
- coordinate healthcare staff and specialists;
- review end-of-life care when necessary;
- support care in the home as much as possible;
- support and care for the entire family, not just the patient (parents and siblings);
- provide grief and bereavement support; and
- offer hope, healing, quality, and comfort.
The packet says that palliative care is specifically NOT giving up, withholding care, stopping medical treatment, taking over from pediatrician.
The team includes doctors, nurses, subspecialists, social workers, chaplains, child psychologists (for siblings as well), and child life specialists for the patient (Kyrie) to cope with feelings about being ill, including discovering adaptive ways to play and teaching both the patient and siblings relaxation and coping skills.
There are also family support groups, help with TEFRA, respite care options, transportation help, summer camps, and sibling workshops!
How amazing is that?!
They also sent us this booklet:
It talks about different experiences parents often have when their child is seriously ill and/or chronically ill, including disbelief and shock, fear, guilt, anger, depression, hope, spousal issues, child-patient issues, sibling issues, support for grandparents, and even for your friends.
For friends, it says:
Friends may worry that they will say the wrong thing. They may want to be your friend, but not know how to take the first steps toward approaching you. They may feel awkward and helpless. They may wonder how supportive you want them to be, and how supportive they can afford to be.
Your friends will have the double feelings of wanting to help you and wanting to avoid you at the same time. Recognize inappropriate sympathy for what it is, and accept genuine caring that gives you strength.
Some of your friends will be able to be with you and love you as usual. There are others you will never hear from again.
Be honest with your friends and tell them what you need. You will find yourself with two communities: your new hospital and clinic friends who know what you are experiencing, and your non-medical friends who will need to learn and grow along with you – and not all of them will be able to do so or willing to do so. Honor the grief of those losses, as well.
How amazing is that? I mean, it’s really good stuff they sent us! There is a whole handful of booklets and a list of resources and appointments and so many things they can do to improve quality of life for Kyrie and the other children and even us as parents as we all go through this together!
It made me cry.
They also want to start collecting pictures and videos of when she is holding sats but compensating by activity level, mood, behavior, or development, just as much as desat moments. So we are supposed to start taking pictures and videos of those moments, any panting, or times when she stops to sit and rest or lay down and rest before getting back up again. And all the times she won’t eat or just pretends to eat (she has pretty much stopped drinking). We will start doing that, and got some today of her starting to turn blue, her improved color after adding oxygen, and perfect color an hour later while sleeping.
In the meantime, the little punk pulled out her ng feeding tube, so I will be putting that back in after she wakes up.
Her teacher said she also found a bandana in the dress up box, and has been shoving it in her “pocket” (pants), strutting around, and then pulling it out and blowing raspberries into it, and then saying “Papa tissue!”. How funny is that?! She’s trying to blow her nose loudly into a handkerchief just like Papa!
She goes into the hospital next week for all kinds of testing, and then we will have some very hard decisions to make over Christmas break before meeting with palliative care again in January.