More kisses

"What are you doing, Elsa?"

"I want everyone to know that he has so many kisses on him."

"See!"

A few minutes later she wanted to tape this note to him too, but I insisted that it be attached to his blanket instead.

Oliver's little fingers

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. 

Happy Birthday, little Robin Hood

Elsa named Oliver "Robin Hood" when he was just a few months old growing inside of me, so i was only fitting that he got a Robin Hood for his first birthday cake.  I don't have the words to express the delight I had in making his cake (which I actually made twice, because the first time I forgot the sweetener!), much less the ability to articulate the deep joy of the miracle that we even got to celebrate a birthday with him.  On his birthday we invited a few close friends over who have been particularly helpful over the last few months, and we had a delightful evening. 

Oliver didn't get to eat any of course, but Nora enjoyed it plenty enough for the two of them I think!

A friend had this darling birthday hat made and sent to us, (Thank you Tia!  It was perfect!).  And thank you to everyone who sent cards and birthday greetings. 

"I love you" whispers:

and birthday kisses:

Happy Birthday, our sweet little one.

Portraits at the playground

My mother caught these shots at the playground the other day.

 

 

My mom has been here for about two weeks and, as always, been a great help to us.   My grandfather passed away on Saturday, so we grown-ups have been in a more sober mood than usual, especially with the news of Oliver's lab work.  We are so thankful for our little girls.  They have been an endless source of delight, laughter, and joy.  They have been so easy to work with in these last few months; they are an absolute blessing to us. 



My cat came back!!!!!

Tabitha Twitchit, our beloved, perfect outdoor kitty disappeared last September.  I loved her probably more than is reasonable for a cat, but she was perfect for us - independent yet loved our company, didn't mind the girls hugging her, AND she caught the rats.  Anyway, I could go on and on about how fond I was of this cat.  I put up signs to try to find her, checked all the shelters, met more of our neighbors from asking to search their yards, and took the girls on stroller rides just so I could go around calling for her.  I may have been temped to do more but shortly after she left Oliver was admitted unexpectedly to OHSU and we suddenly were living in Portland for two months.

Well, about two weeks ago I got a call from a stranger asking if he had reached the home of Tabitha Twitchit.  "YES!" I exclaimed!  He had found her collar in his yard, about a mile and half away from our home, on the other side of our neighborhood.  A few days later we went walking around that area to call for her.  We noticed a small group of people hanging  around outside of a rehab/group home and asked if they had seen any cats around.  They only knew about "that one over there, who's always around here," and there she was!  Our Tabitha Twitchit!  Six months later!  Besides loosing many pounds off her formerly large belly, she's very much the same perfect cat!

 

We kept her in the garage for several days and now she gets to go outside during the day.  I think she remembers us now and is very happy to have regular food and water.  And plenty of love and attention from Elsa and I.  (I love Elsa's rainboot and nightgown combo.)

 

Elsa was so excited she has been drawing pictures of Tabitha everywhere!  It has been very sweet to have such a fun, unexpected blessing in the middle of this challenging season for us. 

Plum Blossoms