Peace from God

Oliver's name fits him so well.  Peace, who is of God.  Oliver Michael died peacefully this morning, and is basking in the perfect lovelight of his Creator. 

We will hold his body for a little longer, and then plan to go worship the King with our church family this morning.  We have grey skies and rain but the birds are singing in the flowering trees.

"...David said to his servants, “Is the child dead?” And they said, “He is dead.” So David arose from the ground, washed, anointed himself, and changed his clothes; and he came into the house of the LORD and worshiped... 'Can I bring him back again? I will go to him, but he will not return to me.'”  2 Samuel 12:19-23

Oh Lord we thank you and praise you for the gift of our son.  Blessed be the Name of the Lord.  Please, God, keep us in your hand and help teach our aching, grieving hearts to sing. 

Praise be to God, my baby can smile now.

Outside

The last two days have been full of beautiful spring sunshine.  I was determined that Oliver should get to have some of it, so with the nurse's help Joel and I moved him and all of his equipment across the living room to reach the front door, where we happily sat as watched the girls play in the yard.  We did this yesterday and today.  It was so nice to have him outside.

Oliver has noticeably declined today.  He listless, as if he is in a deep, continuous sleep with minimal reaction to any stimulus, and in general just looks very sick.  We are so thankful that he still is very peaceful and seems to be very comfortable.  We were blessed to be visited by a few friends throughout the day.  For me, as a die-hard extrovert, it is very good for me to have people around, even during such crazy painful and confusing times like this. 

Besides sitting outside with him for a while, Joel has been reading the Bible and praying with him and I have enjoyed singing hymns to him (with loud accompaniment by Fernando Ortega - I don't want to cause Oliver pain by me just singing acapella - no, that's me being sarcastic in my own pain, it is really because I can't get through most of the songs I want to sing to him on my own without breaking up).

Tomorrow is Easter, and the crazy beautiful redemption and love we celebrate tomorrow some how includes our story.  Our story feels so big and huge in my soul that it is hard to think of anything else, yet the God of Abraham, Issac and Jacob has a story that is as big as the whole of time and space.  And he knows how it will end.  And he knows the chapter we are in this very moment.  And as I cling to my own son, he has given up his own out of love for me.

We will continue to love our little one for as long as he has been given to us, and will praise our God who blessed us with him.

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

 

He looks good in brown

We love Daddy's Bible stories,

especially when they involve the entire collection of animals, dollies, and toy food to play it out!

 

sister lovin'

I love it that his expression seems to say "Mom, do you have to let them do this to me?"

And this is a picture of Oliver blowing bubbles, one of his favorite activities.

Ups and Downs

I wrote two weeks ago how Oliver has been more alert and responsive.  My cautious, skeptic personality keeps me from getting too excited about each little up and down, but last week he continued to do so well and it has been fun to play with him.  His strength, alertness and wakefulness last week impressed and surprised his nurses, physical therapist, cognitive teacher, Cacoon (care coordinator) nurse, and pediatrician, all of whom had visits with us that week. 



We were noticing that he was doing better controlling his head so we've even been sitting him upright!  His balance and head control is far from perfect, but he's doing so much better than even before he was admitted in Portland, which is not what we were led to expect!  It is a little hard to see in the pictures but I support his hips between my knees and hold his elbows and he does the rest!

  

He could even push himself up on his legs when I supported him like this: 

After all that hard work then he got to just chill with daddy, but he kept on kicking!

Unfortunately over the last week or so we've two big areas of trouble with him that has made it difficult to continue playing with him like this. 

First, we discovered that he was developing a really bad yeast infection/rash around the back of his neck.  It is so difficult to keep his neck dry and clean because of the trach ties around his neck (even though we change those daily) and his continuous drooling (despite our best efforts to keep his chin surrounded by bibs).  With his clothes on the back of his neck was always dark, warm, and wet. So, now we are treating the rash, leaving him shirt-less to keep his back aired out, and positioning him always on his side so his drool will be less likely to drip into his neck folds.  Thankfully his back is starting to clear up, but it has spread to his shoulders so we keep chasing it with medicated ointments and Aquaphor. 

Also, he has had the worst teething experience I could imagine.  He now has four teeth, and, starting a week ago, has been biting his tongue regularly.  Not just nipping his tongue, but all out chomping on it, terribly.  When Oliver gets mad, or is in pain, or has a seizure, or is unhappy for any reason he clamps down his jaws super hard.  This wasn't a big deal until he got teeth, an now he has two top and two bottom teeth, so his mouth has been extremely angry and dangerous.  The damage and discomfort snowballed as he would bite his tongue, his tongue would swell, we would try keep teething rings and pacifiers in his mouth to protect his tongue, then he would get really mad about that and clamp down his jaws even more, plus I think he has even more teeth about to pop out any day.  We stopped trying to use the teething rings when we realized that his clamping was causing pressure damage to his gums - the tissue on the ridges of his gums as well as the bites to his tongue are white with damaged tissue. 

Between the horrible teething problems and the irritation of his neck rash Oliver was barely sleeping a few hours a day comfortably - he's been constantly aggitated and squirmy.  After talking extensively with the doctor and nurses we all agreed that the best thing to do would be to just get him to sleep for a few days!  He's now on regular doses of Benedryl and Tylenol, and we've also slightly increased his seizure med in case the clamping down is related in any way to mild seizure activity.  Thankfully he has been peacefully sleeping for the last 24 hours or so, and we plan to keep him sleeping comfortably for another day or so to just let his body rest and heal. 

This last week has reminded me why I never wanted to become a nurse or doctor.  I can handle the ideas and science, but damaged tissues and pain/disease related bodily fluids are just too difficult for me!  The damage in Oliver's poor little mouth was just too much for me to bear - I could hardly make myself take the photos the nurse requested so she could determine if it was thrush or pressure damage.  So when I say I am thankful Oliver is sleeping now, mean that I am especially VERY thankful in this situation.  Seizures and other episodes are terrible, but seeing him suffer this week has been especially heartbreaking to me. 

I am so much looking forward for the rash and his mouth to heal so we can play with him again as I described at the beginning of the post.  My mom has been here for the last week and has been a great help, but I wish she could see Oliver more when he is happy and stong and alert.  On a very positive note, we have not needed to "bag" Oliver to recussitate him in over a week now!  Also, he has been regularly maintaining 100% oxygen saturation with only 1 liter per minute of oxygen support, which is the lowest he has been at since we've been home.  Yea!  Finally, Oliver has a birthday on Monday!  One year old already! 

Honey Bear

The fact that Nora's mess looked artistic enough to photograph didn't make it any less of a job to clean it (and her) up, but it did help me smile through the process.  She was smiling too, but in her case it was beccause she had a mouth full of honey. 

 

Ballerinas

Elsa has been LOVING her little ballet class, taught by a friend in her home to 3 to 5 little girls, ages 3 and 4.  Elsa also loves teaching Nora what she's been learning.  Nora's great skill at being a copy-cating little sister makes her a perfect student: 

 

Note the little ballerina dolly who also got to participate: