Baptism

My heart cries out to write a sweet and detailed account of Oliver's baptism, but I simply do not have the energy to gather my thoughts into the words they deserve to describe that precious evening at our home.  I do plan to write about it, but not tonight.  We wished we could have celebrated the committment and promises to our covenant child with our whole church family, but instead we had a small gathering with the elders and a very few close friends. 

Two days before Olivers's baptism our dear friend called me up and asked if I had an outfit for him to wear, and I fell apart in tears.  She stopped by later that day with a patterns in hand, and had his darling little outfit delivered to our door by the next morning.  She even added extra snaps for all the tubes!

Extreme living-room makeover

Oliver now gets the biggest room in the house!  We've rearranged our living room so that everything Oliver needs is readily accessible, but even with all the medical equipment I was determined for our home to still look adn feel more like a HOME than a hosptial room.  We keep a small amount of his supplies at his bedside but the bulk of his supplies is in plastic storage drawers that fill the guest room closet so the living room can still be "live-able." 

From left to right we have a medical cart (holds the baby scale, various supplies, and his CD player), the nurse's desk (with his feeding pump in the foreground), an organizer unit (with bins for tracheostomy supplies, ventilator parts, suction catheters, feeding supplies, clothes, and other medical supplies), his ventilator, his crib with a table at the foot for his suction machine, pulse oximeter (to measure heart rate and oxygen saturation), and burp cloths, and then you can see the tops of two oxygen tanks in the back right. 

A few happy memories from Portland



When I asked Elsa if she was happy that we were going home soon, her reply was, "No, a'cause I do not think we will get so many treats there."  The OHSU Doernbecher Children's Hospital really does a great job caring not only for the patients but the whole family.  We were so blessed to give Elsa and Nora so many new experiences and "treats" while we lived in Portland for two months. 

 

 

We got to see "Huckleberry Finn" several times during our stay:

 

 

At the Oregon Zoo:

 

At the Oregon Children's Museum:

 

 

 

We had High Tea at a fancy tea shop,

 

 

and in a choo choo train!

 

 

We got to do more crafts that we would have ever done at home:

 

 

And even had Thanksgiving with family!

Goodbye to Doernbecher

Oliver had several setbacks during the last week and a half before we were discharged.  He had been doing so well sprinting off the ventilator, and our medical team still had high hopes of Oliver going home with the ability to be off the ventilator for most of the day, but he just wasn't able to sustain it.  By the time we were finally discharged, Oliver was fully dependent on the ventilator, needing regular suctioning, and no longer tolerating as vigorous of physical therapy as he could in the previous weeks.  A few days before our discharge we had a conference with almost all of his specialists- there were five doctors, three nurses, and a med student in addition to us.  I am so thankfull that for that meeting.  It allowed us to talk with them all at once, at the same table, about Oliver's condition, our goals for him as we headed home, and plan our care for him. 

David was the nurse that worked with Oliver when he was admitted, and was one of our most regular nurses in the PICU.  It was such a blessing to develop friendships with several of the nurses caring for our son.

We got to come home December 10th!  We spent 54 days at Doernbecher, almost 2 months. 

Providence

I just wrote the previous two posts from a public computer next to the PICU family lounge.  While I was deciding what to write and was beginning to fall into self-pity for how tired and overwhelmed and lonely I was, I began to eavesdrop on the family in the waiting room.  (Yes, I know it's a bad habit, but they WERE talking rather loud and it WAS a public room...)
We were in the PICU long enough that we saw a lot of stressed, scared, and grieving families pass through.  We met some of them and hopefully encouraged some too.
There was a large family in the waiting room tonight - sisters, grandparents, cousins.  Their little girl, ten months old, had a complicated medical history starting in the NICU, had a trach, and was dying.  It sounded familiar.  But unlike the other families we've observed, they were OK.  They were concerned and seemed to fully understand the situation, but the family had a peace.  Contentment is a rare quality to see in a family in the PICU. 
Then I heard them pray with some friends who were about to leave, and my eyes filled with tears to hear the same prayers that have been prayed for Oliver by so many friends be prayed for this little girl by her friends. 
I waited until the friends left then I couldn't stand it any longer so I stuck my head in the room and they let me be part of their family for a few minutes before I returned upstairs to Oliver's room. 
My God knew I needed both some encouragement and a kick in the pants to get out of my self-pity.  Their little girl probably won't be leaving the hospital this time.  They've done their best to help her live well, but their hope is in Christ and his promises. 
It was funny hearing them relate the same experience we've had - the doctors commenting on how well they are handling the situation and how "healthy" they are in their approach to their child's life.  They reply the same way we do - it's not us, we'd be a mess, God has been sustaining us and giving us strength.
It was such a blessing to me to to have even a few minutes with another family who's faced with such similar, terrible, mind-boggling decisions and who also share the same sure, solid foundation. 
I chose to use the computers by the PICU because I was lonely and thought there was an ever so slight chance I'd see a familiar PICU staff member walk by to chat with.  Praise God, he surpassed my hope and gave me a whole family instead.

Busy week

We've had a very busy week.  Overall Oliver is doing well.  He's had some rough days as his sedation meds get weaned down, but he continues to do well breathing on his own off the ventilator (he's "sprinted" for up to five hours now, without any trouble!)

We've also been in four hospital rooms in two wards in the past eight days.  It's funny how such little things can really get terribly annoying, even when Oliver is stabilizing so well.  Thankfully we are now in a room right next to the nurse's station in the "intermediate care" ward, so it still feels like the nurses can see Oliver pretty easily even though he has his own room, unlike the more open feel of the PICU. 

We've been blessed by several sweet visits from friends, including one that caught this darling photo of Oliver. 

They were also finally able to get Oliver in for the MRI on Wednesday.  We got basic results on Thursday and I got to speak directly to the Opthamologists and Metabolics doctor today.  Essentially the scan showed abnormalities consistent with a mitochondrial disease and that correspond with his current symptoms:  a small, atrophic optic nerve (he squints in response to bright lights but doesn't respond visually otherwise), his brain overall has a lower volume than it should for his size and has a "shrunken" appearance (brain development requires a lot of energy which would be limited with a mitochondrial disease, and it looks like his brain wasn't able to keep up as his body grew), and there were several hyperdensities (abnormal "bright" spots) in the parts of the brain that control respiration and body temperature.  If a mitochondrial disease is limiting the energy available to sustain his cells, it may be that the respiratory distress that got him admitted here brought on a metabolic crises (evidenced by the spikes in his lactate) and his body couldn't support non-vital, high-energy demanding systems (like his eyes) while his vital systems needed more attention, causing some of the cells along his optic nerves to die. The MRI results can't lead to a diagnosis of a mitochondrial disease (we're still waiting for the DNA tests for that, due to get back to us by January we've just learned), but it confirms that it is still the best explanation for Oliver's condition. 

We're still aiming for a discharge date of December 10th, so next week should be busy again with getting the extensive discharge checklist completed in the hospital, settling arrangements for getting the girls, our vehicles, and stuff home, and making sure everything is set up and ready for us at home between the two home health care companies we will be working with for the in-home nursing and medical equipment. 

We are doing still doing well but are getting very tired.  It will be so good to be home again soon. 

Thanks-giving

In the middle of this season of being displaced it was such a sweet blessing to get to celebrate Thanksgiving with family.  Sister Emily flew in from Virginia and we all (minus Oliver) drove down to Salem to spend the day with Aunt Emily and cousins Katie and Lucy.  I haven't uploaded all my photos from Thanksgiving, but I've got the one of sister Emily from my phone. 

She helped us finish decorating Oliver's room - we covered part of the sliding glass door some of the things we are thankful for.  At home we would have done a similar project, adding leaves to a "Thanksgiving tree" everyday.  It was neat to get to share our tradition with the nurses working with Oliver that week. 

One of my top thanksgivings this year is for everyone praying for us: 

Since I took the photo I've added Missouri and Iowa.  It has been so encouraging to see this everyday in Oliver's room, and has been a neat witness and converstaion starter with some of his medical team.  Let me know if I've missed anyone!