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!

PICU

We knew our trip to Portland would be eventful, but not this eventful.

The surgery follow-up appointment went well - we now know how to replace Oliver's g-tube ourselves. 

The IV placement for the DMSA scan did not go well, but after eight tries and trying all three of the top teams of nurses they finally got and IV into Oliver.   It took so long that we had to reschedule our doctor appts. for the next day.

The DMSA scan went very well - you can see the gamma camera in the photo above; Oliver is the burrito bundle in the middle.  The scan showed that Oliver's right kidney has grown slightly and is functioning at full capacity.  His left kidney, however did not show up at all on the scan, meaning that it has absolutely no functioning kidney tissue.  This is good news - the doctors have agreed that we will not be removing the bad kidney because in situations like this it will atrophy, shrivel up, and eventually go away.  It is also good news because the doctors expect this means that Oliver's hypertension will go away too. 

During our time in Portland, Oliver grew increasingly cold, listless, and had greater and greater spells of turning very pale.  At first we didn't think too much of these symptoms because cold feet is a common side effect of one of Oliver's medications, he is normally a very sleepy baby (and often gets overstimulated and "shuts down" on days like a big hospital visit), and he had been poked so many times that I wouldn't have been surprised if he turned pale!  But these symptoms worsened over Tuesday night, and by the time we saw the phlebotomist team on Wednesday, they confirmed that he looked worse than when they had seen him on Tuesday and helped us get checked into the pediatrics clinic across the hall.  We were seen quickly, and the nurses hooked him up to monitor how fully his blood was saturated with oxygen.  Healthy saturation is 100% and means that your lungs and heart are working properly to get oxygen to all parts of your body. 

Oliver's saturation would dip as low as 70% during a severe spell of going pale and getting cold.  This was not good. They soon admitted him to the Pediatric ICU (PICU) and he was visited by swarms of doctors, residents, nurses, cardiologists, and others. 

I won't go into the full details, but basically they think that all of Oliver's symptoms indicate that he is fighting sort of severe infection, and because of all his medical conditions his body is having a more difficult time battling the bacteria or virus.  They are doing a host of blood, urine, and respiratory cultures to try to discover the culprit. 

In the meantime, Oliver requires a ventilator with oxygen and nitric oxcide to breathe (the nitric oxcide keeps the ventilator from worsening his pulmonary hypertension), a "bear hug" warm air blanket to maintain his body temperature, and a blood transfusion to keep the IV fluids from watering down his blood too much (his red blood count was dropping).  They are doing regular chest x-rays and echocardiograms and additional blood cultures every time he spikes a fever.  Since he is so difficult to put and IV into they've also given him a PICC line; a semi-permanent, larger IV line that taps into a larger vein than a normal IV.   He's also heavily sedated and being given pain med so he can tolerate the ventilator breathing tube and to help him rest.  (Now there are even more monitors/equipment hooked up to him that you can see in the photos.)

He looks terrible.  Bloated and pale and sick.  Even so, we are very encouraged with the excellent team of doctors and nurses that are caring for him (and for the handful of other medical personel who have taken a liking to him, like the phlebotomist who came over to his PICU room today just to give him the puppy dog you see in the photo below). 

It is also encouraging that he is behaving and responding in a manner very typical of a severely infected (or septic) child, so we can have a bit of an idea of what lies ahead.  As the infection runs its course and the antibiotics and meds kick in they expect him to get worse  before we start seeing any notable improvement.  We expect to be in the PICU until Monday, and in the hospital probably a few days more (with a strong emphasis on the words expect and probably).

We are so thankful that we were already in Portland when this happened, and that Joel's mother was already in Medford to care for the girls.  We are doing well, resting the peace that passes all understanding, remembering the God of all comfort, and meditating on II Corinthians 1:3-11.  Please keep us all in your prayers.

CDRC Developmental Assessment

Two weeks ago Oliver was seen by the Child Development and Rehabilitation Center (CDRC).  Like our cardiologist and nephrologist, they are based in Portland but thankfully have clinics in Medford.  The geneticist who saw Oliver back in July was also with this group, but this was our first time seeing them for a developmental assessment. 

Their evaluation was simultaneously disheartening and encouraging.  I guess I'm getting used to having confused and conflicting emotions.

Oliver is now 6 months old, but was born a month early so that puts his adjusted age at about 5 months.  For gross motor abilities he is developmentally comprable to a 7 week old baby.  I have known that his gross motor abilities have regressed since his hospitilizations, particularly that he doesn't lift his head near as well as he used to, but this was still difficult to hear stated officially.  The good news accompanying this evaluation is that he seems to be moving like a NORMAL 7 week old baby.  In other words, it does not appear, at least so far, that he has some condition that impairs his motor ablility; he is simply delayed and they expect that he will eventually be able to catch up.  This may make sense considering his persistent sleepiness and disinclination to be on his tummy after have his g-tube placed.  We'll start working with Early Intervention as soon as the paperwork goes through.  They'll come to our home to do therapy with him and teach me how to do it too.  We're also looking into working with a private therapist in the meantime. 

See how tangled up the emotions are?  Our son is pretty far behind BUT so far it appears to be simply a delay and not a disorder.  So there is great hope that he can catch BUT it means a lot of therapy appointments, home therapy to add to my daily routine, and even more paperwork.  But he is totaly worth it. 

It was also difficult to have the doctors confirm that he has a vision problem (more conflicting emotions: yep, one more thing to fix on the baby! - that's the dissapointed sarcasm, but it is accompanied by the wave of hope of thinking "that may be why he hasn't smiled yet!  He can't see us well!").  His extropia (opposite of cross-eyed; his eyes look apart) seems to have worsened rather than improved as he's gotten older, so we've added an appointment with the Casey Eye Institute at OHSU in Portland when we'll be there in a few weeks (yea, I just love coordinating even more appointments! / I'm so thankful we have so many experienced specialists working with our son and that we're catching so many of theses issues right away).  You can see the problem with his eyes in this recent picture:

His recent check-up with his cardiologist showed that his heart contiues to function well in spite of all the abnormalities. 

When I took him in for his bi-monthly pediatrician last week I realized I have been so preoccupied with managing Oliver's medical care that I forgot to take the girls in for their annual check-ups!  Our doctor and nurses had a good laugh with me over that today.  There'll all scheduled together now for one big visit next week.

We didn't quite miss out on summer...

 

Thanks to the warm September weekends we finally made it to go play at a lake before "summer" was over.  Since school had started already we practically had the place to ourselves!

 

 

 

Elsa did not want to leave.  Her pout was classic.

 



Maid Marian

For several days lately Elsa has refused to answer to anything but "Maid Marian."

 

 

Even poor Nora, who has finally started calling her "Essa" instead of her endearing "Tata," is now referring to her sister as "Essa Mare-ian."

What a drama queen.  I can't imagine where she gets it.