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