The Search for Doctors

Quintin is doing well in his new home. Since this facility is only staffed by (very skilled) nurses, the challenge recently has been finding doctors to manage his care, write orders for tests, etc.

As it turns out, Quintin’s case and the doctor we originally planned for were not a good match. She focuses more on hospice care and doesn’t work with ventilators. So it’s been the family mission the last few weeks to build a team of doctors from scratch. It has been very difficult to find the right people – ideally we’re looking for doctors who are able to come to Quintin, so he doesn’t need to be transported to doctors’ offices or hospitals for appointments. Not many doctors do home visits beyond hospice, and we’re not a hospice case.

We now have an internist, Dr. H, who is essentially the primary care doctor. He is a mobile doctor who constantly travels to see his patients all over western Washington. He comes to see Quintin almost weekly. The next priority has been finding a pulmonologist (lung doctor). He will be going to see a pulmonologist in early December who we hope will take him on long-term. We’re still searching for a neurologist and a speech therapist. He receives physical therapy and other treatments from nurses and therapists at the care home.

Quintin’s sodium level has slowly been going up and is now in the normal range. To maintain that level he’s on a liquid restriction, which also means he’s at more risk of a mucus plug developing in his chest. It’s a delicate balance but he’s done well so far. Overall he’s been much healthier here than he was in the hospitals. It’s rare for him to have a fever and he hasn’t had to deal with lung infections lately.

As we approach the Thanksgiving holiday we’re reminded to be extra grateful for family and friends, health and happiness.

Six Months

Just shy of the six-month mark, Quintin moved to an adult foster care home in Vancouver. He is one of six residents in the house (a real house, not a hospital!), and it is a very refreshing change from the nondescript hospital rooms he’s been in to this point. He has his own room, it’s painted a nice calm shade of green and the window looks out on a quiet cul-de-sac. He has cozy jersey sheets on his bed and gets to wear real clothes instead of hospital gowns. He still has a small ventilator and some other equipment in the room but even so, it’s infinitely more comforting and home-like. The woman who runs the home and the nurses we’ve met so far are all very nice and caring both to Quintin and those of us who visit him.

There are no doctors making regular rounds at this facility, like there were at the hospitals, so a doctor who has known the Rices for many years has agreed to take his case on. When he needs tests or any services beyond the day-to-day care the nurses provide he’ll be transported to hospitals. It’s very likely that one event or another (a high temperature, for example) will occur and he’ll need to spend a few days at Emanuel again, but that’s just the way the process goes.

On Saturday much of the family went to a benefit event for Dr. Chen’s research foundation. Dr. Chen is the neurosurgeon who performed both of Q’s surgeries, and the micro-dialysis shunts that monitored Quintin’s cerebrospinal fluid levels in the ICU are one of the techniques this fund has helped to develop. It was nice to see familiar faces from ICU and TRACU all dressed up! After his presentation Dr. Chen played the piano too, which was a real treat. One of the speakers at the event was a young woman who has been a patient of Dr. Chen’s since she experienced an AVM brain bleed a couple years ago. That’s a very different issue from what Quintin is recovering from but it was still heartening to see and hear from a real success story. Here’s hoping Quintin will be the speaker at next year’s event!

October 15

After a few days in the Legacy Emanuel ICU and a few more in TRACU (the trauma care unit, a step down from ICU) Quintin moved back to the specialty hospital. The main reason he stayed at Emanuel was so they could work on getting his sodium levels up. Sodium staying within normal range is crucial to brain function and healing and his had dipped a bit. But it's back on track now and is being closely monitored.

Quintin's uncle Adam and cousin Carolyn were in town for a few days and Adrian, Sharla, and Melissa were here for the weekend. So Quintin got an extra-strength dose of family time last weekend!

October 3

Until yesterday (October 2) Quintin was still at the specialty hospital he moved to in July. For over a month there has been talk of moving him to a foster care home but each time, right when we think we’re ready to go, something delays the move (various infections, etc). The last couple of weeks he’s had fevers that are likely due to neurological causes. The area of his brain that was injured is in the area that controls temperature regulation. The move was pushed back once again in hopes of getting that stabilized before the transition. He is on a long-term ventilator, also in preparation for the eventual move. For the most part he breathes fine on his own, but this vent is set to kick in if he needs it.

Yesterday his left pupil was very dilated and wasn’t responding as it should, so he was sent to Legacy Emanuel for a CT scan. The scan looked ok, which is a big relief. It’s possible that when one of his nurses administered a medicine he gets orally, some it could have accidentally been dropped into that eye and caused the dilation. It could also be a reaction to that medication in general, so he's been off it since this morning to see if that does the trick. At Emanuel they decided to do an overall check up and lab tests also. His sodium levels are a bit low and he has a minor infection that they want to watch, so he’s been admitted into the ICU again. It’s not a big deal, they just have better equipment, can take regular blood draws, etc. We’re actually glad to have him there, where we know so many of the doctors and nurses, and where we know he’ll get excellent, comprehensive care.

Two weeks ago when Beverly was commenting to the nurse that Quintin looked extremely alert, the nurse asked him to stick his tongue out. Within 5 seconds he stuck his tongue out. The nurse let him rest a couple of minutes and told him that we could see that he was not only able to hear us but to also do something intentionally. Then she asked that he do it again so we would know that he could hear us. And he did. He hasn't done it again for the past two weeks, but it is a start toward waking up. Also when we move his limbs to keep his joints fluid, we notice that he has gotten stronger leg muscles. Two months ago when we moved him he did not respond nearly as well as he does now.

Gretchen made a beautiful book of photos of Quintin and friends (thanks Gretchen!) that we’ve spent a lot of time showing him in the last few days. Obviously he doesn’t have his contacts in at the moment but if you really get the book in his face it feels like he’s looking at it.

Thanks everyone for your continued love and support.

August 11

[Apologies for the long gap between posts. There haven’t been a lot of changes with Q, and I was in LA for the end of July/beginning of August with my most recent film festival.]

Quintin has not had a high fever since Monday, August 2^nd. Having his temperature under control is an excellent step. After trying everything they could think of to get his periodic fevers to even out, the doctors decided to try taking him off the drugs that, ironically, were intended to control his temp. Bingo. Since he’s been off that treatment his temperature has been much more normal and consistent.

As has been his pattern, since his temperature has been under control he’s been moving a bit more. He moves his legs in response to touch (which could be reflexive, it’s hard to tell), and has a better cough response than we’ve seen.

New Digs

Just before the weekend to celebrate American independence, Quintin was liberated from Legacy Emanuel! He moved on Friday, July 2 to a small specialty hospital in east Portland. He’s doing well there, and has very kind and positive nurses and therapists taking care of him. The facility is much like TRACU in the level of attention he gets, and hopefully he will have a bit more interaction with physical, occupational, and speech therapists (who, despite the title, do more than evaluate speech and are helpful even at his current level of responsiveness). If nothing else, it’s good to be out of a big hospital like Emanuel, and away from all the potential bugs roaming those halls. As one TRACU nurse put it, “there are a lot of sick people in hospitals” and we don’t need him sharing their germs.

He has a nice big room and, bonus, a television with cable. He had his eyes open when Michael and I were there this morning so we watched part of the Netherlands/Uruguay World Cup semi-final match together. Q was looking sleepy by the half (it was an exciting game) so we stopped there. He probably just doesn't want to know the outcome before he can give the tournament his full attention. :)

June 30

There were a few ups and downs in the last couple weeks, but no major changes.

On Tuesday the doctors decided to get Quintin back on a ventilator. He’s still fighting infections in his lungs, and the purpose of the vent was to help keep his lungs open so his body can clear the build up.

From Wednesday through Saturday afternoon he was moved back to the ICU (West Wing ICU this time). This was mainly because of the vent, and because for those few days he simply needed more care than was appropriate for the 3-4 patient-per-nurse ratio in TRACU. They did at least one broncoscopy, kept him on the ventilator, and decided Saturday he was ready to return to TRACU. On Sunday the respiratory therapist said she wasn’t getting much gunk out when she used the trach suction tube, and that’s great – it means the vent, antibiotics, and Quintin’s efforts combined got his lungs into better shape.

People have been asking recently what Q looks like right now. The number one question has been about his hair. Yes, they had to cut his hair, twice actually (because he had two separate brain surgeries). For the first surgery (in April) they shaved all his hair off. The second time (a month later) they only shaved part of his head, so after several weeks of growth time, it’s a little lopsided. The right side is long enough for bed head, the left is still pretty short. One of his nurses said that his hair growing this much means they’re feeding him well. As well as you can through a tube, I guess.

He has lost some weight and muscle tone, as happens when you’re in bed for this long. Thankfully he was in excellent shape going into this, and his joint mobility is still good. One of the hospital’s occupational therapists showed us how to do some of the range of motion exercises and that’s really nice – it’s a way we can actively help.

Out of ICU and more (a massive post).

A lot has happened in the last week. To recap:

Quintin is still breathing on his own, with the trach collar providing warm, moist air.

On Saturday (his birthday) it was determined he was stable and improved enough to move out of the ICU and into the Trauma Care Unit (TRACU). The Northwest Film Center had sent Q an enormous bunch of balloons, and the whole family was there for the move, so we made quite the little parade from ICU to TRACU – all of us following two nurses wheeling Q in his bed, balloons bumping along the ceiling all the way to his new room.

On Thursday, a team of Physical Therapists in TRACU got Quintin transferred temporarily from his bed into a “chair” to help his lungs and to give his body a general change of position. I say “chair” because it’s really a throne-like version of the bed – completely padded and structured for support. His system handled the activity and new position well, and it sounds like they’ll be increasing the time he spends in the chair each day.

Because Quintin is doing well, it is likely he’ll be discharged from the hospital entirely sometime next week. The next step will be to an acute care facility (much like TRACU, but outside of the hospital). This is both exciting and scary for his family and me. When he made the move to TRACU, we’d seen real progress happening – most obviously that he no longer needed the ventilator. His doctors and nurses have been slowly checking off the criteria required to discharge him entirely, but the milestones aren’t things we can see. At the first discharge meeting Q’s parents and I had with the doctors and social workers this week, they explained what their skilled eyes were looking for: for example, it’s been over two weeks since his last surgery, and they don’t anticipate him needing another one. His heart rate, blood pressure, and other vital signs are trending in the right range. These aren’t obvious steps to those of us observing the process. We’d spent 40 days in the ICU and I think we were ready for another long stay in TRACU. Personally, I’d imagined that he would need to be awake before leaving the hospital, but clearly that’s not the case. So we’re working on readying ourselves for the step that Quintin’s already prepared for. Honestly, remember who we’re talking about here - we shouldn’t be at all surprised that he’s way out in front of us on this!

It’s wonderful that Quintin is making this progress, and enormous credit is due to the amazing team in the ICU. We’re all enormously grateful to everyone there. We have great help in TRACU, but miss our ICU friends very much.

P.S. Although Quintin is out of the ICU, please understand that visitors are still limited to family only and we will let you know when that changes.

June 5:

Happy birthday to Quintin! As the Stirlings said, this guy really knows how to celebrate a birthday. And I’m not even being sarcastic here, there’s some really good news this week!

As Adrian said, he’s off the vent, which is an excellent step. The other big news is that Quintin had an EEG (a test that measures electrical activity in the brain). The results showed no seizures (which is truly wonderful news) and no “focal abnormalities”, that is, areas of inactivity in the brain. There is “diffuse slowing”, which basically means that all over his brain the signals travel slower than they would for you or me. This is completely expected for the state he’s currently in. Dr. Chen (the neurosurgeon) remains very optimistic, and so do we.

So raise a glass to Quintin today and let’s celebrate breathing!

Happy Birthday Q!

Here are a few updates for today.

First, it's Quintin's birthday. Happy birthday Q!

Second, Quintin has been breathing on his own for the past 24 hours.

As you know, the nursing staff has been monitoring his ventilator breathing closely. They have been slowly lowering its settings, allowing him to do more and more of the work. Their goal has been to wean him towards independent breathing. Yesterday morning around 11 am, while still under close ICU supervision, they took him off the vent and let him breathe on his own. The air they are supplying him with is pre-warmed and pre-moistened and he is still breathing through his tracheotomy, so he is not quite breathing normal room air -- but wow, this is a huge step in the right direction!

If he continues to breathe well like this, we are expecting him to be moved from the ICU to the TRACU (Trauma Recovery and Acute Care Unit; pronounced "track-you") in the near future.

We'll keep you updated.

-Adrian

May 27:

Q had a good day yesterday. The respiratory therapist was in (as she is every day) and took Q off the ventilator. He breathed on his own for 15 MINUTES! YAY! He was taking half as many breaths as she wanted him to, but they were twice as big as they needed to be. He managed to keep his oxygen saturation level reasonable and his other stats remained good.

Great news!!

May 25:

Q had some set backs this week.

On Wednesday the 19th his fever spiked (to about 104). They did a series of CT scans to figure out what was causing the fever. Found a couple things:
1) Even though he had been doing well with the standard respirator, there was a lot of build up in his lungs. Apparently having stuff in your lungs that you can’t clear yourself means that the lungs are partially collapsed, so it’s been referred to that way too.
2) Some small blood clots had begun to form in his lungs. While this isn’t a good thing, it’s a very common occurrence when you’re on your back and inactive for this long.
To address these issues they did a series of broncoscopies, put him back on the VDR (the stronger respirator), and started him on two broad-spectrum antibiotics and a strong blood thinner.

The chest infection turned out to be staph again, so within a couple days they took him off the broad-spectrum antibiotics and started a new, targeted one (that’s different from the last cycle, since that irritated his skin).

Very early Monday morning (the 24th) his night nurse found that his pupils were not responding as they had been. She immediately called Dr. Chen (the neurosurgeon) and he called Dale and Beverly in to the hospital to approve another surgery. There was some bleeding and clotting in his cerebellum, likely caused by the blood thinner (which they immediately stopped giving him). Dr. Chen was pleased with how the surgery went, and said the cerebellum is “very forgiving.” He placed one of the drains back in Q’s head to relieve intracranial pressure, and the ICP numbers have been good ever since. No word on how long the drain will need to stay in.

He was sedated for the first 24hrs after surgery, but had his eyes open earlier today. He’s moving his head quite a bit, especially when someone touches his face. From what the doctors and nurses are saying, even though there were some scary days this week, it’s very possible that he’ll be back to where he was last week within a few days, and we just have to hope the next steps move him forward from there.

May 18:

For some time now they’ve had him alternating between a standard respirator and a more intense one called a VDR. The intense one was to help agitate the gunk around his lungs that he can’t get out by himself, so the broncoscopies and trach suction can clear as much out as possible. It sounds like, with the help of antibiotics, he’s beaten the infection. He hasn’t had a broncoscopy in several days and he’s been on the standard respirator for the last two days: all of this is good.

His fever has been up and down; most likely because of his body dealing with those lung issues. When the temp goes up they treat it with Tylenol and ice packs, trying to let his body do as much of the work as possible.
They did a spinal tap (yes, really) over the weekend to make sure there’s nothing unwanted in his cerebral-spinal fluid and so far the tests have all come back ok. They’ll keep watching that as we move forward.

Like I said, we’re really just waiting at this point for him to give us new signs of patching himself up. This could go on for a long time, so we’re hoping he’ll be as phenomenal in beating this as he is in most things in life.

May 12:

He's still in a coma, though making little signs of recovery from time to time. The drains that had been placed in his head to relieve pressure on his brain are out, which is a great step, and the CT scans show that his intracranial pressure has been stable and normal since then. He's still on a respirator, which is why he's still in the ICU. Because he doesn't have a reliable cough reflex he has to have regular broncoscopies (sp?) to clean his lungs out. He's had an on-and-off fever as his body fights minor infections - they know he's dealing with staph but that's something they can monitor and treat with antibiotics. The worry with infection is the possibility of pneumonia - as long as he's on the respirator there's a higher chance of infection, but they need to see steady coughing and breathing to get him off the respirator. A bit of a catch-22. He's shown a few cough responses, so we're hoping he's progressing that way. The infection risk is the main reason why we can't invite people in to see him. He moves his legs and feet quite a bit; arms, shoulders and head sometimes too. He opens his eyes sometimes and seems to track faces occasionally, but I really don't know how much of that is reflex and how much is him actually looking at us.

The doctors have said that now we all have to have patience because it's a very slow healing process. Weeks and months, they say.