The Wonderful Things You Will Be

I am the type of person who likes the TV on for background noise.  However, I will only watch movies and shows that are happy or comedic... I don't need more sadness or drama in my life!  As I was getting ready for work the other day I had on an episode of I Love Lucy.  In this episode Little Ricky had to have some kind of surgery.  In those days the family was not allowed to stay overnight (or even after the surgery!) with the patient.  In classic Lucy fashion, mom finds a way to sneak into the hospital, create havoc, and when Ricky comes to find her late that evening she is curled up asleep next to Little Ricky in his hospital bed.

I share this with you for a couple of reasons.  One is that it reminds me of what a mother will do to be with her baby when she is needed and wanted.  The second is to remind us of how far hospitals have come. 
When we look at the whole picture of Lil over the last year, there has been a steady increase in her pain, a decrease in what she has been able to do, and a lot of frustration for those of us who care for her (and I would say a lot of frustration for her!).  We have tried multiple courses of steroids, pain meds and all the other things you do to take care of your sick babies. 
Our solution (Dr. R and I) was to pull her main docs together and some family members, we just could not fit them all, and discuss a new path forward.  At the last minute Dr. R and I had the forethought to invite Palliative Care... this was genius.  When most people think of Palliative Care they think of end of life care.  Now it means so much more.  As they self described, they are a team who can help with quality of life, communication between the family and the doctors (which is not really an issue for us), and they can help coordinate everything that is going to make that quality of life the best it can be. 

They helped us to understand that while Lil has real pain from her arthritis and headaches, nausea, itching and other things she cannot yet tell us about, she also has a kind of pain called AMPS.  AMPS is Amplified Pain Syndrome.  After looking at pictures of Lil's wounds and her scars the doctor determined that she has a lot of nerve damage.  He said that the nerve damage sends a signal to the brain that there is pain even if there is no longer pain.  I asked if that means the pain is not real... he said that no, the pain is absolutely real.  The brain is still perceiving pain.  However, the problem with AMPS is that pain medicine does virtually nothing to help.  This explains so much!  Lately we have been having to give her oxycodone and Tylenol just to get her close to comfortable enough to go to school.  She missed two months in a row this winter.
Thanks to the hard work of Dr. B, Dr. R and  Palliative Care, we now have a new plan that is very exciting.  With that new plan comes some new levels of acceptance.  I went into the meeting hoping for a new medication regimen.  It took a loving push from my dad (thanks Dad) and about 24 hours for me to realize that this is as good as it is going to get for her and that is what the doctors were trying to tell me.  As moms, we always want more for our kids.  However, the acceptance comes in that this is as good as it is going to get for Lil.  She has had breakthrough lesions.  Even now as I write this I just walked away from examining her mouth and throat and found a big lesion on the roof of her mouth and the back of her throat.  It is  good sign when she asks for a lot of things to eat and eats none of them that something is going on in there....
It is not a good idea to change her current course of meds for many reasons.  The most prominent being that we are using the safest ones and when we look at the fact that we are going to be attempting to control this 'orphan disease' for the rest of her life we have to be conservative with how many biologiques we go through at such a young age.
That brings us to Palliative Care.  Our plan is to get her into psych, PT (specific to AMPS and other PT), try some new pain meds, get us involved with a social worker there and Child Life (on a new level), we are going to get a handicap placard (Dr. R's idea), get Lil an IEP or 504, and get Nettie into therapy.  Deep breath.  All of this would not be possible without Julie. As a family they want us to change the focus from anxiety (which I have been trying to do but by myself I guess).  They also talked about how in pain management they are getting away from those pain scales and focusing more on the function of the patient.  I totally get that; people always ask me how I can possibly have a migraine but still be standing there talking to them.  It is because I live with migraine 24 hours a day, 7 days a week.  Palliative Care said the same for Lil.  She will probably never be at a zero, they said her best will probably be a 4 but to look at her function, what she is able to do.  I love this way of looking at things. 

 

They would like us to push her to do more, go to school 5 days a week, play more without meds, etc.  The mommy in me who has lived with this disease is scared and excited.  I have seen what happens when she pushes herself and she pushes too far (so much pain, vomiting, wiped out for days....) but they said if we don't let her do this she will not learn how to gauge for herself what her limits are.  The mom in me says, "She is only 5!"  The mom in me also says, "She can do this!"
There are a few things we are still "talking about"  (AKA disagreeing on) but this is why I love my docs at AI.  I can talk to them, it is a discussion.  I want a medical stroller.  She can play more if I can get her to the playground.  It is the same idea as the Handicap Placard.  It is a support.  I also want to try medical cannibus.  We are still 'discussing' this idea but they did not shut me down right away on it.  Dr. R had a good point on the stroller.  He said, "I just don't want to make it medical."  I get that but I also have to live life with her and she does not fit in a traditional stroller anymore.  I can't carry her around, that is worse!  She is almost 6. 
So Lucy, you were ahead of your time.  Good care for kids is a team effort.  I am excited and scared about our path forward.  Our girl looks healthy so much of the time but underneath all of that is a very sick little girl and behind her is a family who has been struggling to support her.  Hopefully we will now have to struggle a little less.  Our Palliative Care doctor shared a group with me called Invisible Diseases.  It is so hard when she looks normal but is just not.  The dynamics are very interesting...