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!

One step closer to home

We heard from the home health care company that they hired someone today!  This is what we've been praying for so we could get home!   Our case manager had explained that we were stuck in the hospital indefinitely until another respiration therapist was hired in Medford so the company could safely take on another patient on a home ventilator.  We called everyone we knew in the medical field at home to spread the word about the position and battled feelings of helplessness with trust that God was preparing just the right person to serve Oliver when we get home.  We have no idea how long the company's paperwork and training will take, but we are thrilled to know that we are one step closer to home!
Oliver has still been doing well, but had a slightly rougher day today.  He's been "sprinting," breathing without the ventilator, for up to two hours, four times a day.  Today for the first time he appeared to be struggling to breathe by the end of his sprint so we gave him ventilator help a bit early.  Thankfully he seemed to recover well on his own and did not need extra help beyond his regular, low vent settings.
I'll try to give a better update tomorrow with more photos when I'm at a better computer.  Here's Oliver during one of his physical therapy sessions.  He is sticking his tongue out in the close up photo because he's searching for his pacifier - it didn't take him long to remember it as his sedation meds have been weaned off!

He's doing so much better, but we're not going home quite yet...

Oliver has been doing great since the surgery!  He's on minimal ventilator settings again, he seems very comfortable with his new trach tube, and his tracheostomy (the opening in this neck) is healing well.  We're working now on getting him back onto his home feeding schedule and on changing over to a home ventilator.  His milk has been supplemented for a few days now with medium chain fatty acids which may help his energy and stamina if his underlying condition is a disorder that causes difficulty in metabolizing the larger molecules in food. 

He has been very awake for much of the last two days.  Today he did great with his first trach tube change by the ENT (Ear, Nose, Throat) doctors, plus he stayed awake, alert, and happy for a full 30 minutes of physical therapy, got really interested in his oral care (part hygiene, part therapy for working on his oral skills again), and "played" with me while I held him for an hour, with only short naps in between!  The most fun part of his recovery to see so far has been his interest in his pacifier now that his mouth is free.  His speech therapists (for eating/oral skills) are really pleased that he's interested in things being in his mouth already, so soon after being extubated.  He's only sucking lightly on it now, but when it falls out it's really funny to watch his little lips and tongue searching for it again!  It has also been funny watching the nurses fall in love with him and his handsome-cute cheeks now that you can see his face and he's awake more.  (The rolled-up washcloth is helping him keep the pacifier in the photo below.)

Since he's doing so well we were really hoping to be home next week, but we've learned that we really won't be getting home for another week and a half at earliest.  The delay isn't because of Oliver, but because, with Thanksgiving and several other people set up with home ventilators in southern Oregon, there won't be a qualified home health care nurse available in our area to get us set up with the appropriate equipment at home until the Monday following Thanksgiving, at earliest.

This was really disappointing.  I don't feel a need to be home for Thanksgiving per se, but that I hate the idea of Oliver being stuck in the hospital longer than he really needs too.  Praise God that within a few hours of learning this I realized some very real benefits of us being here a bit longer - while in the hospital Oliver gets seen every day by physical therapy and speech therapy, and when we get home we'll only get to see them once a week, at most.  I'll get to talk to the pulmonologist as frequently as I want and can push them to wean the vent settings as low as we can before being discharged, after which we may check in with them weekly, at most, and probably often not in person.  We're getting to see opthamology while we wait instead of making a whole separate trip up here to figure out what's wrong with his vision - it won't be a full assessment but they are going to do as much as they can while were here.  We may still be here when his metabolic tests get back so we can immediately discuss the results, in person, with the metabolic specialists, and we'll also get a bit more time to evaluate the effectiveness of his new supplements.  So when we do get home, Oliver will be that much stronger and ready to go. 

We don't know the full reason why we have to stay longer, and even with all the advantages I can find it still would be so much better to be together at home and no longer depending on all the wonderful help we've been receiving, but as long we we're here we'll trust that God's plans are better than ours.

I got to take a walk for about an hour today when there was a break between all the doctors and specialists stopping in.  The sun was actually out today!  I especially enjoyed the vantage from one hillside - the children's hospital and blue skies on one side (Oliver's room is the the lowest square window on the left corner),

and a moss drenched stairwell on the other (the photos from my phone camera don't do it justice - the sunbeams on the bring green was stunning). 

Successful surgery

Oliver's tracheostomy surgery went really well!  The doctors were prepared for complications but he did great and is now resting back in our room.  Even though he's still sedated and sleeping, he looks so much more comfortable already. 

We were so pleased when the doctors told us this morning that they would be able to use the same sedation/pain meds that he's been on for the last few weeks (but at a higher dose) for the anaesthesia, and just locally numb the site for the incision.  We're thankful they didn't have to introduce additional drugs. 

The surgery and his immediate recovery have gone so much better this time compared to his g-tube placement.  He'll get to rest a few days now before they resume weaning the ventilator.  Just because he has a trach now doesn't mean he gets to just "ride the vent" and let it do all the work - our plan is to still keep working with him to help breathe independently again. 

Thank you for all your prayers!

Surgery tomorrow (Friday) morning and some sibling therapy

We learned this morning that they were able to fit Oliver in for tracheostomy surgery tomorrow, Friday morning!  Yea!  We are so glad that we won't be waiting for another week just to get scheduled.  We know there are risks to any surgery or procedure, but we are very much at peace that in this situation, for Oliver and our family, this is the best option right now. 

We've been in the PICU at Doernbecher Children's Hospital for 22 days now, and we're ready to start the process of getting home, where Oliver can continue to recover more comfortably and our family can enjoy getting back to our normal routines again.  We'll have about two more weeks here after the surgery tomorrow.

In the meantime, we'll continue to make the most of our situation here in Portland.  The therapy services at OHSU have been such a blessing to our family.  Two of our favorites are "Huck Finn", the large, incredibly soft therapy cat:

...and the new dollies and medical supplies provided by the family life therapist for the girls:

Elsa decided today that her dolly needed more than bandages and medicine.  She donned her gloves and mask and gave her dolly a ventilator and a feeding tube. 

I guess I need to start looking for a children's book on Clara Barton - she nursed her brother back to health before starting the American Red Cross - anyone know of a good one?

Tough day

Oliver tried so hard today.  I let him grasp my finger as I tried to soothe his chest as gasped for breaths.  He did much better than last week, but it wasn't enough. 

At first he seemed to hold his own with just the CPAP supporting his breathing, but soon his blood work showed that it wasn't enough to keep his internal chemistry balanced. Also you could just look at him and see how hard he had to work to keep it up. It just wasn't sustainable.

He's back on the ventilator and we're planning his tracheostomy surgery. I am mixed with disappointment at the failure today and with encouragement with the fact that he really has improved since last week, which we weren't really sure would happen at all.

My heart breaks that Oliver needs a tracheostomy, but we, and his doctors, think that it's his best shot at healing faster, getting off the sedatives, and getting home. More details later - I'm trying to write this from my phone and we're so tired from the day. Here's Oliver with daddy, just before his big attempt.

Waiting one more day

This morning the doctors decided to give Oliver one more day to get "tuned up" all the way before trying to take out his ventilator.  He's been doing great on his "sprints" still, and whether he ends up needing a tracheostomy or does great on his own we're glad to think that he'll be as ready as we can help him to be.

We'll see what God has planned for tomorrow.

And here's a few random photos from the last few days:

Look at those bright eyes!  He's really liked the mobile in the last few days. 

And I got to hold for the first time in, what has it been, two weeks now?

 The girls continue to enjoy the novelties and activities in the children's hospital.

Her Royal Highness Elsa helped tuck Oliver in for his nap in his chair -

She made sure he had his "Robin Hood" necklace that she made him at one of the children's art therapy activties.

Here he is after she finished with him - any child would agree that naps are best when you have ALL your animals with you!

Maybe tomorrow?

Here we go again: Oliver has been on 6 hour "sprints" during which he is on low ventilator settings and having to breathe more on his own.  Tomorrow we expect they will again try to take out his breathing tube so that he can breathe again entirely on his own.  Please pray that he is strong enough Monday afternoon to do it! Last week Monday they tried and he failed the test so they put the breathing tube back in after watching him fight for 45 minutes. –Joel

A sweet day of rest before starting "Boot Camp"

Oliver took a day of rest yesterday to recover from his big attempt to breathe on his own, and today they started him on "Ventilator Boot Camp." 

Yesterday he actually woke up for a few hours and we got to "play" a bit.  I talked and sang to him, and showed him all his animals and toys, and they let us put up a mobile for him.  He was kicking and squirming about, but was very peaceful and not frantic as he sometimes has been when he's woken up some from sedation.  His eyes were much more open than you see in the photo - he hates the flash. 

Then he fell asleep holding his billy goat. 

It was a sweet time to get to interact with him following such a discouraging time on Monday.  It was so reassuring to me that my little guy is still in there and still has some kick in him.  It's true that we cherish the sweet times so much more right after a time of grief. 

Today he mostly slept but has done well as they started weaning the ventilator again and pushing him to exercise his lungs and diaphragm.  They make him do "sprints" of two hours on minimal pressure support, and then a rest of two hours on the full ventilator support, but with less and less help each time.  They'll build him up to longer times of "sprinting" with minimal support wach day.  "Sprinting" is a good word for it - that's probably what it is like for him even though he's just lying down!  His main doctor this week is optimistic this exercise routine will work for Oliver, and so far he seems to be responding well. 

I got to meet with one of the metabolic specialists late yesterday, and, while it was quite informative about mitochondrial diseases and how they could relate to Oliver's condition, he communicated that the preliminary test results were inconclusive (of the two markers they looked for, one was positive and one was not).  We're still waiting for the full genetics panel (about 400 genes) to come back in a month or so. 

For now he remains a puzzle, and we'll keep helping him as best we can.  Please pray that his lungs and diaphragm will strengthen.  

I was really pleased to learn that we could start working with a physical therapist while were in the hospital.  They tried to start with us today, but Oliver wanted to keep sleeping, so he just got to sit up a bit instead. 

Also, we've chosen not to do Halloween, but we do love to dress up, and my mother (who arrived yesterday, Tuesday) was smart to bring a surprise outfit for Elsa in case there were other children dressed up at the hospital.  There were lots of costumes around today, including three fairies that visited Oliver.  I don't know if Elsa was more excited about getting dressed up herself or seeing Oma (my mother!) as a fairy too!  

And fairies have to fly of course, so we took the girls for their first ride on the OHSU sky tram.  Elsa was pretty quiet and pensive the whole time we were "flying," which means she loved it.

I was content not to dress up, but enjoyed being outside for a bit, walking with my girls, and taking pleasure in Nora's cheerful demeanor and Elsa's fluttery merriment.  It was a lovely diversion after the last few days in the PICU.  (Nora was starting to get tired in the photo below.)

The leaves continue to change color - look at the difference in the two weeks we've been here!  (This may seem like nothing to y'all back east, but we have mostly evergreens here!)

We keep hearing of new prayer lists that our family has been added to, and I will attest that we can so clearly feel the support you all are giving us.  When I step back and reflect it is a miracle how stable we have been able to remain through this, how our family has been provided for in so many ways, and how Oliver has persevered through so much in spite of his limitations.  Thank you for interceding for us. 

Fiery arrows

I was reading in Ephesians today about the shield of faith, and how it helps protects us from fiery arrows sent by the enemy.  Thank God for this shield, because I feel like we had some arrows shot our way today.

They tried to take Oliver off the ventilator today but had to re-intubate him because he was not breathing effectively on his own.  They tried all the other options of breathing support before starting him on the ventilator again, but none of them were quite enough for what he needed. 

Re-intubation is not terribly uncommon, but Oliver is, so this is not a simple "we'll try again in a few days" setback.  We've known since he was born that he has low tone (muscle weakness, hypotonia) and fatigues easily.  He also doesn't recover well from situations that cause muscles to atrophy from disuse, like hospital stays, and, as we are learning, ventilators.  Being on a ventilator even for strong adults causes the diaphragm and other muscles that work in respiration to begin to atrophy in even just a few days.  All of these factors, plus his underlying pulmonary hypertension, were all playing against him being successful breathing on his own.  He had done well on the "transitional" CPAP settings on the ventilator, but we think he may have been extra worn out from that too because it required him to initiate all the breaths on his own.

Working under the idea that his diaphragm needs to be strengthened, the doctors are going to be putting him through what they call "ventilator boot camp".  Tomorrow, after he recovers from all the hard work he did today, they will begin to put him on successively lower CPAP settings for longer amounts of time, and letting him have "resting" intervals on full ventilator support.  Just like training in the gym - successive sets with heavier weights and more reps, with rest time in between.  This "boot camp" will last about a week.  So we're looking at being here a minimum of two more weeks from now. 

If "boot camp" doesn't work then we'll be discussing a tracheostomy and a home ventilator with the doctors.  This would allow him to have a variety of respiration support as needed, would allow him not to be sedated, and would let us go home if everything is stable. 

We are very much anticipating getting the preliminary results back from the metabolic tests sometime later this week.  Knowing if he does have a mitochondrial disorder, and then what type, would greatly help us know how to help him.  We'd then have an idea of whether we should expect things to get better with therapy and treatment, or worse as his muscles and organs continue to weaken. 

So it was a sad, sobering afternoon for Joel and I as the last week of progress feels to have slipped into nothing as the nitric oxcide machine was brought back in to the room to help with the return of his acute pulmonary hypertension episodes and he was placed back on the warm air "bear-hugger" blanket again help bring his body temperature back up to normal.  He had to work so hard to breathe during that short time off the ventilator that it just completely wiped him out. 

Sorry, no new photos.  Oliver looks the same except with a new tape job moustache-ed across his sweet chubby cheeks.  Little babies should have kisses on their cheeks, not medical tape. 

We've known since January that we might only get to have Oliver with us for a short time.  As King David did for his son, I will plead with God for Oliver to have a full and strong life, and like David I will choose to praise Him even when I don't understand what He's doing.  But do we ever really understand what he's doing?  So when praise Him, isn't it always in the midst of a confusing, difficult world?

Weaning off the vent on "Oliver time"

We all had hopes of Oliver being extubated off the ventilator today, but Oliver had different ideas.  Early this morning (about 4am) they switched the ventilator settings to "CPAP" which essentially are intermediate settings between full ventilator support and being off the vent.  Shortly after this he had a big desaturation, down as low as 50%, and was not able to recover on his own so they intervened and went back up to full ventilator support with low settings.  His morning chest x-ray showed more fluid than the previous day, his electrolytes are still off balanced, and he's been having trouble processing the carbon dioxide out of his system - all factors that work against him being able to breath adequately on his own. 

So, as the doctors put it during rounds this morning, this will not be a "typical" extubation procedure. 

Oliver is overall still doing well, at least compared to few days of acute illness that caused his admission here, and we're hoping that we'll be able to have him off the ventilator by Monday. 

On one hand this setback was a bit dissapointing, but we're getting used to Oliver taking his own time to stabilize, so on the other hand it makes sense that his body will need a gentler, slower transition.  Contrary to my natural inclinations regarding hospitals, for Oliver I am in favor of longer hospital stays, slower transitioning, and more monitoring because of the puzzling nature of his underlying condition, so thankfully I'm not stressed out about being here longer each time he takes a step back.  Don't get me wrong - I can't wait to get home, but I'm very happy to wait until we are as sure as possible that he's stable enough to get there.

Thank you all for your continued prayers.

Weaning off the ventilator

Yesterday, Thursday, Oliver took  "a step back" because the doctors had to go back up on some of his ventilator settings to keep him stable, but today, Friday, he had a very good day.  He tolerated a few "big steps forward" on weaning off the ventilator, hasn't had any significant desaturation or bradycardia spells, and slept all through the day.  I think his nurse even got a little bored, but I think he would agree that boring days in the PICU are good!

Tomorrow will be a big day - if all goes well the doctors plan to take Oliver off the ventilator!  He has responded well overall to the weaning process, and the doctors seem optimistic that he will do well with the extubation (vent removal) too.  I am somewhat apprehensive about it considering that his heart stopped after he had a strong gag reflex on a breathing tube previously, but I know the doctors will be prepared for that possibility and that God continues to hold our little boy. 

The doctors have started weaning Oliver off the sedatives, but we learned today that this process will take some time too.  I hadn't thought about my dear baby going through withdraw as he woke up, but he's been on opiate sedatives and pain killers for 10 days now - long enough that he's gotten used to them and will need some support and time to wean off of them.  

His x-rays still show some fluid in his lungs, and he still is "poufy" as Elsa described to me when I asked how she thought he looked.  The docs are using several means to help him diurese this remaining fluid off, so hopefully he'll look normal soon. 

Here he is tonight, with his puppy propping up his vent tubes. 

With Oliver having such an uneventful, sleepy day, I actually had a quiet, restful day.  Betsy and the girls came in the morning, and Joel and I met for dinner after his work (he's been able to do some work remotely from a company office in Portland), but otherwise I had the day to myself.  In spite of being in the PICU it was rather nice!  I'm trying to rest and sleep now expecting that Oliver will probably need lots of mommy time when he starts to wake up from sedation. 

We continue to focus on the blessings and provisions.  I was reminded while meandering through the 8th floor courtyard today that beauty can be found even in drainage pipes.    

Another good day and a bath

Oliver had another good day overall.  He's now only on "moderate" ventilator settings, and has had only a few brief episodes of low blood pressure and oxygen desaturation.  When these happened they went back up slightly on the settings, but that's typical progress - two steps forward, one step back.  He's looking a lot more normal, but still has some extra fluid that he needs to get out still.  The doctors continue to tweak all of his meds and rebalance his electrolytes as he progresses.  His morning chest x-ray showed improvement again, and the echocardiogram today showed that his pulmonary hypertension has fallen back to his "mild" baseline level. 

One unexpected step of progress was that Oliver got a bath today!  Even though he is still sedated, it must have felt good to be sat up for the first time in a week.

The nurse also had fun putting some clothes on him, which Joel and I actually didn't really like because he still has so many wires and tubes attached to him, and they'll just have to take it all off for the x-ray tomorrow morning anyway.  But it was nice of her to let him sit in a baby bouncer for a bit of a change for him. 

And at least his shirt matched the dinosaur tape around his IV.  Isn't he handsome in green?

Unfortunately the girls were still sick today, so they haven't been in to see Oliver yet, but it is so much better to have them at least in the same city as us.  We really hope they are better tomorrow to at least come visit at the hospital, even if not to Oliver's room yet. 

We've been blessed with so much help and encouragement in so many ways in the last week, thank you all so much!  We've gotten help with places to stay, food, nanny-ing for the girls, visits, toys and activities for the girls, and so many prayers.  Thank you, thank you.  We couldn't get through this without you all!

And Joel got me flowers, even though we're not allowed to take them into the PICU room.  He always knows which ones will make me smile.  Thank you, dear.

Progress report

Oliver has had a quiet, mostly un-eventful last 24 hours.  His blood pressure and parts of his regular lab work still are mildly volatile, but they are thinking that it may be due to his underlying condition and not the infection.  He has been waking up and becoming more alert, and looks for us when we talk to him.  He is still moderately sedated, but his calm wakefulness is a great sign of his improvement.  As long as he remains calm and comfortable they won't increase his sedation.  He's finally not looking quite so puffy as the diuretics have taken effect.  They have been slowly weaning his off the ventilator and nitric oxcide (for his pulmonary hypertension) and overall he is doing well with that.  Depending on which nurse you talk to he is on moderate to moderate-high ventilator settings, so he still has a ways to go to be fully weaned.  His morning chest x-rays showed a slight improvement, but again, he still has a ways to go.  The doctors continue to tweak all his meds as his body stabilizes and restabilizes with the slow improvement.  Praise God for all your continued prayers and for his gradual progression. 

The girls have been sick on and off for the last few days, but seemed improved enough this morning that Betsy (my brave and wonderful mother-in-law) loaded them in our minivan, along with more clothes for us, and began the trip to join us in Portland.  We may not let them come to the hospital yet, but we can't wait to have them with us. 

I have been so blessed to have several visits from friends, particularly some who have experience with long hospital stays with children involved (as patients and children of patients).  Y'all have been so encouraging to us and have given us some great support and advice for adjusting to life in the hospital.

Of all places to "stuck in the hospital," I am so thankful we are stuck in Portland, even if it is at the beginning of rainy season.  For example, the room service menu offers selections like grass-fed beef, goat cheese, and steamed kale!  I can get kefir in the cafeteria!  Also, at least at the children's hospital, there are outdoor, rooftop, courtyards nestled on each floor - some for playing, some are "quiet" courtyards, and all of them are full of green planters and benches.  And the views from the rooms and skywalk are filled with hills of evergreens sloping down to the river.  These are the views from Oliver's window:

I've missed my garden all year, but am happy to enjoy growing life anywhere.  Fall comes to hospital courtyards too. 

Oliver looks about the same as in the last post, but I'll get some more photos of him for the next update!

Slowly stabilizing

Oliver has been slowly stabilizing and improving last night and all through today (Saturday).  He is still heavily sedated, receiving heavy doses of pain meds, getting full support from the ventilator for breathing, and requiring a diuretic to help keep the fluids moving out of his body.  His blood pressure has been pretty stable, his heart is doing its job, and his color is so much better. 

He still is on a 1:1 ratio with a nurse, but it was encouraging to us that he was one of the last patients that the doctors visited when they made their rounds this morning.  That means that his condition is not quite as critical as it was yesterday when they visited him first!  This morning his lungs still looked to have about the same amount of cloudy fluids, but the doctors were not surprised at this and increased his diuretic to see if it would help.  They also started the slow process of trying to back off of the ventilator.  He had one major dip in his oxygen saturation this evening so they gave him the ROC (paralyzing med) again and went back up on the ventilator again, but not quite up as high as it was.  That's is how it's going to go - two steps forward, one step back.  We're praying for more steps forward than back!

So, Oliver is improving, slowly, and stabilizing, but is still critical.  The doctors are working hard to keep his medical conditions, medicines, and ventilator support all in balance to help his body fight the infection as best as it can. One doctor yesterday explained that it is very encouraging that Oliver is responding well all the treatment, but was honest with us that, in his estimate, 20% of medically complicated kids like Oliver still don't survive a severe infection like this.  We'll be in Portland for at least another week, best case scenario. 

So far no results have come back to indicate which bacteria or virus is making him sick, and we may never find out, but the doctors are suspecting some sort of virus at this point.  They explained that the bug Oliver has is not necessarily a serious or deadly virus, and Oliver is not necessarily more susceptible to getting sick and he has a good immune system, BUT because of his medical condition, when he DOES get sick, he gets REALLY sick.  In other words, the same bug may have given you or I a runny nose, but it sent Oliver to the ICU. 

Oliver still has some atypical symptoms that the doctors are puzzling over, like his inability to regulate his temperature still, and the lactate levels in his blood work.  They've started us talking to a specialist in metabolic disorders, which was interesting to me because his cardiologist has also mentioned the possibility of Oliver having metabolic disorder, specifically a mitochondrial disease, because of his sleepiness and fatigue.  It could also explain some of the abnormalities with his vision, heart, kidney, respiration, short stature, low tone, and difficulty fighting infection.  We are obviously very interested in this new possibility, especially since all the genetics tests have come back normal.  Unfortunately there is not a lot understood about mitochondrial diseases, but I'm going to do my best to not read up on them too much until we know anything for sure!  We'll get preliminary results from blood work in two weeks, and full results in 6-8 weeks. 

Joel's dad had flown to Medford to visit while Betsy was taking care of the girls, and we're so glad he could make a quick change of plans and join us for a day in Portland too. 

We are doing well, Joel and I, but it is still difficult.  I still cry as I hold his hand and soothe his forehead, but our foundation is firm.  We are sleeping, eating, taking walks to the cafe, and even enjoying time to talk and sit together.  God has blessed us with some very sweet moments as he carries us through this.

We thank you all so much for your prayers - we feel so supported and upheld, and oh, how desperately we need the upholding!  We know we are on prayer lists all over the country, and we are so thankful. 

Elsa and Nora know my favorite hymn well, and Oliver probably too for the many times I sing it to them in the nightlight glow as they fall asleep. 

How firm a foundation, ye saints of the Lord,
Is laid for your faith in His excellent Word!
What more can He say than to you He hath said,
You, who unto Jesus for refuge have fled?

Fear not, I am with thee, O be not dismayed,
For I am thy God and will still give thee aid;
I’ll strengthen and help thee, and cause thee to stand
Upheld by My righteous, omnipotent hand.

When through the deep waters I call thee to go,
The rivers of woe shall not thee overflow;
For I will be with thee, thy troubles to bless,
And sanctify to thee thy deepest distress.

When through fiery trials thy pathways shall lie,
My grace, all sufficient, shall be thy supply;
The flame shall not hurt thee; I only design
Thy dross to consume, and thy gold to refine.

The soul that on Jesus has leaned for repose,
I will not, I will not desert to its foes;
That soul, though all hell should endeavor to shake,
I’ll never, no never, no never forsake.

---

Unstable but not acute

Oliver had a good night, under sedation, and by morning had good color again.  He is pink and puffy.

He had a quiet morning.  This morning's chest x-ray showed that his lungs have gotten worse (as the doctors expected).  By midday his blood pressure kept dropping really low and they began working pretty intensely to stabilize him.  Even under sedation he was trying to move and fuss a bit (we're glad that he's a little fighter!) and they think that when he does he exacerbates his condition, so they are giving him a "paralyzing" drug, or ROC, to keep him from moving and to let his body really rest.  All of his vitals responded positively to the ROC meds.  They are waiting now for his blood pressure to normalize a bit more so they can place an arterial blood pressure probe. 

So, he is "unstable" - they are monitoring intensely and constantly tweaking his meds to support him, and he has a 1:1 nurse devoted solely to his care and monitoring (our nurse, David, is highly experienced and rarely leaves the room!), but he is not "acute" - his current condition is not immediately life threatening and he is responding well to treatment. 
We're still waiting for results from the blood, urine, respiratory, and spinal fluid cultures. 

Thank you for all your prayers and encouragement!