Wednesday, April 3, 2013

There's No I in Crazy

Another weekend, another hospital trip for Quinn.

Following the week from hell in our house - very high fevers in all three kids, a few pediatrician visits and some antibiotics for Quinn to resolve an ear infection - on Easter Sunday morning Quinn had 2 bloody stools.  Our horrid scare from early February too fresh in our minds, Brett and I shuttled the boys off to my mom's to have some semblance of an Easter and ran Quinn to the ER.  While there, her oxygen levels were low - upper 80's, low 90's - so we began blow-by oxygen.  She mainly self-corrected but the oxygen gave her a quick pick-me-up so we kept administering it as necessary.  

Against our better judgment, and for a lack of a medical professional to back us up, we allowed them to admit Quinn for observation.  Quinn was incredibly congested, leading her to desat (lower oxygen numbers).  Although at home we handle her congestion with Benadryl to dry her out, a humidifier to keep her wet and a few pounds on the back to keep her loose the hospital took a far more aggressive approach and put her on oxygen full-time.  


ever resourceful, Quinn turned the o2 tube into a teether

We were insistent that Quinn be released yesterday, after our agreed-to terms of a 24-hour observation.  And we are adults and her parents, and could have acted of our own free will.  But the coercion of the team of physicians effectively scaring the crap out of us led to a decision we knew was wrong at the time, and yet we made it anyway.  We let her stay another night.


At 11:00 last night, a swab - done more on protocol than on hunch in the ER - came back.  Quinn has the flu.  Has had the flu for a week now.  As apparently did Colin.  And actually, probably Reid too (we didn't bring him in to the doctor as his symptoms appeared less severe than the others and we had been told it was just a virus).  

Kind of a big miss.


our life last week.  some spring break!

she does 'pathetic' really well :(

Even outside of this pretty crappy, definitely avoidable situation with the flu, the hospital stay this time was incredibly stressful.  We were made to feel as though we were craaaaazy.  Crazy to want to take a less aggressive approach to the oxygen levels (i.e. treat the source - the congestion, rather than the symptom - the desat-ing).  Crazy to say we had a palliative care team appointment lined up for Tuesday and that was the most important thing to us.  Crazy to say we want to take her home, the hospital really is no place for a sick baby to get well.


Crazy to continually insist that Quinn's comfort and happiness are paramount to whatever the standard protocol is in situations like these.  In other words, crazy to concentrate on Palliative care.

Though it is sometimes difficult to separate ourselves and objectively view the situation from the perspective of these physicians, we do get it.  

We get that they are deathly afraid of Quinn. That they truly are uncomfortable treating a child entirely in the present tense and not being so concerned with 'later'.  That the overarching theme in Quinn's care in this setting is "Not on my watch!"  

All they are able to see is a terminally ill child.  Not a ten month old with some pretty severe congestion who's really uncomfortable and could use a hand in correcting the source.

Though we barely made it out in time, Quinn was released late Tuesday morning.  I dropped her at home with her newly acquired oxygen paraphernalia to 6 (lol - SIX!!!) people to take care of her at home (Nanny, Grandma, aunt Mary and cousins Megan, Kristin and Erin - with two cameo appearances by daddy) while I made it into the city just four minutes late for the Pall Care Team meeting.

Ever since we decided not to pursue the stem cell transplant we have been ambling about, trying to figure out the best way to handle Quinn's care.  It all seemed so very abstract and early, so there was no real rush - until her crash 2 months ago.  We really started the ball rolling after that, but what we found is there truly is a lack of pediatric palliative care programs in our area.  Like a puppy chasing its tail, we have been running in circles sent from one doctor to another only to be told the best person to speak to is the person we already met with two people before.

Programs are either on hiatus due to lack of demand, or in the very early planning stages as they hadn't been established before.  What we've gleaned from it is that like everything else, Quinn's situation - even in the world of very sick children - is unique and rare.  Most pediatric illnesses go from curative care to hospice care.  There is a way to fight - and when there's a fight to be had, especially when it involves a child, fight you do.  There is even a whole new scope of care - Pediatric Concurrent Care, which allows children to receive Palliative and Hospice care while still pursuing treatment (another awesome advance made possible by the Affordable Health Care Act ... just sayin'!).  Which is great - soooo great!!  But different - soooo different - from Quinn.  It is very hard for people to grasp that there are times when there really is nothing.to.do.

Today, however, I did meet a team of incredible women who focus on just that.  They work with many groups, including the metabolic disorders team (so other children like Quinn - with NPA as well as illnesses like Tay Sachs, Hurler's and PKU).  The team consisted of a physician, a nurse, a social worker, a child life specialist and a chaplain.  And they all wanted to help Quinn.  

All of them.  A whole TEAM of people!!!  

They 'got' our goals.  They asked me for our ideal scenario (within the current context, of course!).  And they said they will be there for us to make sure it happens.

A team of people, assuring me we are NOT crazy.  And that Quinn will live out her life as we wish it to happen.  

A good friend of mine from high school is now a physician, and has reached out a number of times.  Of course, it's about Quinn - how she's doing, how we're doing.  But it's also been in a different vein.  It has been to thank us for opening people's minds to discussions about end of life care.  About how to live out whatever remaining time we have.  That it is NOT a foregone conclusion that you must act within the standard protocol of fight fight fight until the very end before comfort can be considered the primary goal.  

I thanked her for her kind words - she's so intelligent and such a good person so any praise is really meaningful - but I didn't entirely get what she was talking about until these past couple of days.  When she said no one talks about it - she literally meant NO.ONE.  Not even physicians.

So all of you wonderful souls who keep asking "what can we do, I'd like to help" can start here.  Think about yourself.  Think about the fact that not one of us is going to live forever.  And then think about how you would envision living out the remaining time, what your priorities are, what is most important to you.  

And then talk.  Have a dialogue with yourself.  With your family and loved ones.  With your priest, rabbi, counselor.  Talk about what you may want and ask them to think about what they may want, understanding it is ever evolving but ever important.

Do it in honor of Quinn.  That is What You Can Do to Help.

an amazingly peaceful message and image
captured by an incredible woman and friend.
thank you Chelsea - this really gave me peace of mind when I needed it most

8 comments:

  1. Wow, Eileen, what an awful last few days. I am so sorry, and that feels like a lame thing to say. In Colorado, they sent the Butterfly Clinic to our house, for pallative care for Trek, the week he was diagnosed. I did not realize how lucky we were that it was already in place for us. I am so sorry you have had to to all of the leg work yourself. You are such amazing parents to go to the ends of the earth for your baby girl. We love you guys. xoxo ,Chelsae

    ReplyDelete
  2. I'm so glad to see you update. I'm sorry what you went through at the hands of doctors who do not understand. You are doing exactly what is right for your family, and you guys are certainly NOT crazy. I love reading your blog. Your whole family is in my thoughts.

    ReplyDelete
  3. Eileen I an so sorry to hear that all of them have come down with the flu and that Quinn was in the hospital. You are not crazy and I can't stand when Dr's make you feel that you are or that you do not have a child's or anyone best interests at heart, you are not crazy you are your Childs ADVOCATE, both you and your Brett know Quinn better than any doctor will ever know Quinn. It is so hard to find the right the people to work with let alone a Team of people to work with. I am so happy to hear that you found a team that will help you advocate in the manner that you both want for Quinn, and that will not make you feel like you are making the wrong discission or that you are crazy. You you are absolutely right that everyone how ever young or old needs to have that conversation with someone in their life so when the time comes your wishes can be followed through. Both you and Brett are great parents and All your choices are made out of the love that you have for Quinn and are no wrong choices when it comes from LOVE. You have given and continue to give her a WonderFULL LIFE. Sending lots of love to you and your family always.
    Susan

    ReplyDelete
  4. Eileen, we are just so so sorry and sad to read this post. The lack of personalized medicine for each individual is something that Steven and also found beyond disheartening. Quinn is a such a special little girl and you are wonderful parents making her life full and beautiful. I also agree with Chelsea ... I did not have a full appreciation for wylder's palliative care team being just what we needed them to be and understanding our every wish. I am sorry you have had so much additional work to crate your own "tream" for Quinn. We are glad everyone is starting to feel better in your household. Sending love always Eileen!! Xoxo

    ReplyDelete
  5. Oh Eileen - I wish I could actually convey every feeling your post evoked as I read it. I know this with all of my heart, though. That there is only one thing to do when there is "nothing.to.do." And that is EXACTLY what you and Brett are doing. Making it all about Quinn and making sure she has a WonderFULL LIFE. Please know that by sharing your journey with Quinn you have already caused so, so many people to think and talk about "it". You and the other wonderful NPA familes who have allowed us to be a part of your lives have given us that gift - reminded us to look at the rest of our lives, however long or short they may be, as the precious gifts they are. To not only cherish each moment, make every day matter, and embrace life, but to also gather those who are most important to us close and commit together to making that happen - no matter what the circumstances. There is just no way on earth that could ever be crazy! A world of love to you and your family. xoxoxo

    ReplyDelete
  6. I'm so glad you were finally able to find a team to work with you and understand what you want. Sending prayers and positive thoughts!

    ReplyDelete
  7. Dear Linzer family,
    I've been following your blog for a while now. Each time you guys amaze me. You are SO strong, inspiring and just...loving! Quinn is such a beautiful baby and I'm so sorry for the things she's been going through. I pray for her! <3
    I just wanted to let you know that this blog is inspiring me so much and makes me appreciate life more and more. Thank you for that.

    Sending love and support from the Netherlands :)

    ReplyDelete
  8. Sometimes I wonder why God would give sickness to such a remarkable little girl and her family. What's the reason, what's the purpose? I believe each of us are here to do a job. We may or may not succeed. I truly believe Quinn's job on this Earth is to teach, thru herself and her family and they have succeeded in ways they may not know.

    Quinn has taught me so very much about love and commitment. I thank Quinn for teaching me that no matter how frustrated, tired or worn out my 8 month old son makes me, I am so grateful to have such a feisty little soul to "argue" with. I thank Quinn everyday and speak about her to my son. We pray each night for the Linzers and thank God for our health.

    I thank The Linzer Family for trusting they know what's best for their daughter, better than any doctor, medical book or study. I thank God that they chose to have their baby at home, safe, warm and loved, not in a scary hospital with strangers poking and prodding.

    I will continue to cheer Linzer, Party of Five on, keep them close to my heart and to thank them for all they've taught me.

    ReplyDelete