Monday, November 12, 2012

Showing off Addie and Meeting Neurology

Addie wanted to make sure we got maximum enjoyment out of time in California so she started the day off for us nice and early at 4am.  And then we jammed today full so we are completely exhausted right now.  But I know a lot of people have been thinking about us and praying for us so I wanted to update you on our day!

We had really great parts to today.  It was so delightful showing Addie off at her clinic appointment.  Her doctors and nurses raved over her and her progress.  The head of transplant said she looked 'like a million bucks.'  She was dressed to perfection in her smocked turkey dress and matching bow (AND HEARING AIDS :)!) and just the most beautiful little doll girl ever.  We had such great information and help from her team and some of these issues we have been having with med levels and hydration seem more manageable now.

Tomorrow Addie will go under for her 6 month protocol biopsy.  There are several different things we are looking for but one of the big ones is slow or chronic rejection.  Her body could actually be slowly working away at the kidney and because it is a big healthy kidney, her labs still look ok.  And then by the time we did realize it, it would be too late.  So they are going to do a needle biopsy and remove kidney cells and study them to see what is really going on in the kidney.  They say that in about 50% of their patients, they make a significant change to treatment based on the biopsy results which then leads to better long term outcomes for the kidney.  So it is definitely a good thing.  It will be a long day tomorrow and we never like seeing our fun energetic busy girl knocked down by a surgery.  And while it used to be such a regular occassion, it's now been 5 months since she had to go under so no fun to go through that.  But we are thankful for these amazing doctors who have tools like this biopsy to ensure her best long term health.  We would appreciate prayers for no surgical complications and a quick recovery and that we will have busy miss Addie back to herself in no time!

Addie went home for a nap with her nana after clinic and Al and I took Max shopping and out for lunch and cupcakes and had a really great time the three of us enjoying the beautiful California weather.  So we did have some great parts to our day!

Then we had our meeting with neurology and it was really difficult and emotionally draining.  There is a lot of stuff that I'm not going to get into now, or maybe ever because it is sad and probably not things everyone wants to have to think about.  But basically as nice as the neurologist was (and he was so much kinder and more compassionate than anyone we have seen before), his overall conclusions on Max were not really more hopeful or easy to think about.  He does not expect Max to make a lot of progress or ever walk or talk.  He said it was 'statistically extremely unlikely'.  Of course we know miracles happen and we will never stop praying but we also expect that we will be dealing with very serious disabilities for Max's whole life.  He did tell us that Max may be thinking a lot more than we can tell and gave us some advice and direction for trying to communicate with him. So that was one positive and optimistic part. And he totally loved Max and appreciated his sweet and happy personality. In terms of transplant, there are just no easy answers.  He certainly had some concerns about transplanting him, both in terms of handling the surgery and more signficantly, adding immunosuppression into the mix. There are both short term and long term risks.  But there are also a lot of risks staying on dialysis.  He addressed all the usual quality of life concerns and the dilemmas we face deciding what is truly best for Max.  We know we want to transplant Max but we continue to pray for wisdom in deciding if that is what is best for him.  Please pray for us.  We are making decisions no parents would ever want to have to make.  So please pray that we feel at complete peace with our decisions and an acceptance of the direction we head in.  

We are emotionally drained tonight.  Talking about these things is tough on us.  But we are nonetheless so thankful that God led us to Stanford and that we have these amazing doctors giving us insight and advice on Max.  And they all do it with so much compassion, for him and for us.  We love our team here and appreciate them so much and have no doubt we are in the right place for our family.

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