Hard decision

I'll start this post with copies of the emails we sent out to our friends and family yesterday as learned the results of Oliver's lab work, drawn Tuesday morning (so you can just skip the emails if you have already seen them and jump to the new info at the bottom).  It was the first time we had blood work done for him since we let Portland in December, and we knew something in his systems was acting up because of some changes we had been noticing (reduced urine output, edema (swelling from water retention), sleepiness, etc.). 

On Tue, Mar 26, 2013 at 2:20 PM, Sonya Dunham wrote:

We had a lovely time celebrating Oliver's first birthday yesterday. He slept through almost all of it but we were thankful to get to celebrate anyway!

This morning a nurse was able to get a good blood sample from Oliver's heel to check some basic chemistry. The results showed that his chemistry was extremely abnormal and that his "good" kidney is no longer functioning properly. Under "normal" conditions Oliver's chemistry numbers would be causing uncontrollable seizures and severe, abnormal heart rhythms. We expect that Oliver's chemistry has been getting to this point slowly and so his body has built up a bit of a buffer to the extreme imbalances. Even so, if his chemistry is not re-balanced, his body will continue to shut down due to renal failure.   

We are currently talking with the pediatrician and kidney specialists to decide what to do. Our choices are to stay at home, expecting to shift fully into hospice care and comfort measures or to rush to OHSU for Oliver to be admitted to the PICU again to try to rebalance his chemistry and recover his kidney function. We are waiting for the full doctors' information on what we would really be able to do in Portland to help us decide what course to take.

Please, please pray that God would guide our thoughts and decisions.

  

A few hours later, after several long phone calls, at 5:26 PM, Sonya Dunham wrote:

We got more information from the nephrologist from OHSU and spoke at length with the local pediatrician. We are choosing to stay at home and not take Oliver to Portland. The nephrologist (kidney doctor) explained that Oliver's chemistry is so extremely imbalanced that if we went to OHSU we would need to start emergency dialysis procedures, not just carefully re-balance his electrolytes. It became very clear to us that Oliver's kidney failure has progressed so far that we believe the best situation is for us to keep him at home with us to allow him (and us) to be as comfortable and peaceful as possible. Though we know that patients often surprise their doctors with their resilience, it was helpful for us that the nephrologist "guessed" that Oliver may have another week or so with us.

We knew when we made the decision to give Oliver a trach and come home from Portland we were also making the decision to not pursue routine lab work as we had previously done, so this problem, though very painful and difficult, is not a complete surprise to us. His blood chemistry has been imbalanced all his life and before he required a ventilator we would go weekly for lab work and were adjusting his supplements constantly. 

The doctors have been very supportive of our decisions all along, and continue to be very understanding of our choices about Oliver's care. One of the many things I have been praying for is that big decisions about Oliver's care would be very clear and that Joel and I would be united about what to do, and I praise God that he has granted that to us. 

We love our son so very much, and we are so very thankful for your ongoing prayers and support. Please continue to uphold us as we enter into this new stage of loving and caring for Oliver.

We are still at peace about our decision to stay home and keep Oliver with us.  Today felt very different for us, but Oliver was his normal, sleepy sweet self.  (He doesn't know that his lab results were extremely abnormal.)

For those interested in the details, the lab was a basic metabolic panel (BMP).  I didn't get all the all the results from the pediatrician, but here are a few of the important parts:
BUN (blood urea nitrogen) and creatinine are two easily measured compounds in the blood that are both filtered by the kidneys but differ in how the body can or cannot regulate reabsorbtion back into the blood.  Together these two lab values are useful indicators of renal (kidney) function. 
Oliver's values on Tuesday were:
BUN:  85  (normal range is 5-15 mg/dL; Oliver is off the charts high)
creatinine: 1.61 (normal range is 0.16-0.39 mg/dL; Oliver is off the charts high)
These values indicate that his kidneys are not filtering these components out of his blood. 

Kidneys also maintain electrolyte balance in the body, which is vital for, among other things, proper function of muscles (including especially the heart) and nerve (including the brain). 
Some of Oliver's values on Tuesday were:
Sodium: 107 (normal range is 136-145 mmol/L; Oliver is extremely dangerously low)
Potassium: 2.9 (normal range is 3.4-5.0 mmol/L; Oliver is very low)
Calcium: 7.8 (normal range is 8.6-10.2 mmol/L; Oliver is very low)
It is amazing that Oliver is still alive with these lab values.

We plan to continue caring for him as usual with his routines, meals, and medicines.  Joel has been able to take off from work- we are so thankful for how understanding his bosses and co-workers have been.  We are generally carrying on as normal but are holding him more and taking more photos.  I don't know what God's plan is for him.  I am thankful that, if his condition continues to progress according to medical expectations, his decline will be comfortable and gentle. 

It is a terrible feeling of helplessness.  I find myself trying to kiss away his renal failure and respiratory failure just as I kiss away Nora's "owies" and Elsa's bruises. 

We have been dressing him up in his new birthday outfits and he is just darling. 

 I am so thankful for a good God of hope and a promise of perfect eternity in his perfect love.