brothers

brothers

Thursday, October 16, 2014

Wow! Amazing Progress.

Climbing stairs two days
after we got home
Ethan's had a surprisingly great three weeks since we came home.  I mean surprisingly, as in "Wow! Look at what he can do now!" and great as in, "I can't believe he's still wearing his brace!"

Man he's firing on all cylinders.  Okay, maybe he's not firing on ALL cylinders.  His sleep cycle is still in the crapper.  But aside from that, he's been amazing to watch.

Let's start with the elephant in the room, his brace.  He's wearing it.  I can't put it any more plainly than that.  Yesterday, he wore it from 8 to 8.  The day before that he wore it most of the day, except for two periods when he asked to take it off and have a break.  Then he let us put it back on after 20 or 30 minutes.

Why is he wearing it?

The brace
It's a little bit of the anti-anxiety meds that he's still on, but only a little bit of those.  It's a part that he's not in school and not as active as a lot of kids, so I think it gets in his way less.  As Sarah pointed out, a big part is that the folks in Seattle did a great job making it for him and so far he doesn't have any red, rubbing or sore spots that we can see.  But most of the reason that the brace is working is that Ethan is working with us. He's mostly accepted the brace, he's not fighting it.  We still need to negotiate with him sometimes.  And when Ethan says he wants the brace off, then it comes off as long as he's not doing something that might throw his back out of whack.

We were all prepared for this to be a big, big challenge for Ethan, but he's handling it exceptionally well.

In other news, cognitively, Ethan is making a lot of visible and audible progress.  He's actually started occasionally using full sentences!  They're slow and he's got to think a some, but he's putting the words together!  Last week, we were all out at his psychiatrist appointment. Sarah and Ethan took the elevator up and Caleb ran up the stairs and was waiting for them when the doors opened. Caleb looked at Ethan, and said, "Wow.  How'd... you.. do. that?"  It was super cool.  Then last night, Sarah said, "I love you, Ethan." and Ethan said,  "I love you too." Which was maybe the second time he's done that, and was even more awesome-r.

We've also seen some signs that Ethan's problem solving abilities have increased.  The other day, Caleb wanted Ethan to stop playing the video game that he was into so that they could put in a different one that Sarah and Caleb could play, too.  Caleb asked Ethan if they could change games so that they could all share and play together.  Ethan stopped his game in mid-level and said, "okay." And allowed Caleb to make the change.  Sure, it's a small thing, but a few months ago Ethan just wouldn't have been able to stop and reason that through.

Also last night, while I was studying in the den, Ethan, Sarah, and Caleb came in.  Ethan had put on his sneakers and the backpack that he used to wear to school.  He came in and Sarah asked him where
Ta-da!
he wanted to go and Ethan said, "School."  I wanted to dance and I wanted to cry.  It was so great.

So, what are we doing to support all of this growth?

I've got a couple of emails into his case manager at the school district looking for ways we can stretch his playground time.  I think the kids have gym before recess and snack time after recess.  I'd love to get Ethan into those loosely structured activities before or after the playground time that he already knows.

Unfortunately, Ethan's sleep cycle is pretty screwed up right now.  That's really impacting how often we get to the school for playground time, and it will probably continue for the next few weeks.  Ethan's been waking up early, like 4 or 5 in the morning.  Then he's tired and ready to fall asleep where he's standing by 9:30, when it's time to go to the playground.

Sleep has always been a challenge for Ethan.  But it's worse at the moment because we're weaning him off of his pain meds and the stronger anti-anxiety meds that he's been on, And that's making it hard for him.

I've also asked the school system if we can develop some afternoon options for him.  Hopefully, we'll be able to put something together over the next week or two so that Ethan has some other school options that meet his needs.

Don't get me wrong.  Ethan and the brace is an ongoing dance and constant negotiation.  And we've got a long, long way to go before Ethan will be ready for even a half-day back in school.  But I think Sarah and I are both stunned, so very pleasantly stunned, by how well he's doing.
Sleeping at the
school playground

 Why?  Why are we seeing all of this development now?  What's changed?

Sleeping at the
school playground
Sleeping when he should be at
the school playground
I don't know the answer to that.  The best part of an answer that I can come up with is that I think Ethan's been making slow progress over the last year.  But he's been so unstable emotionally that he couldn't express it and we couldn't see it.  Why is he more stable now?  It didn't happen overnight.  It's been a very slow process of improvement over the last 9 months. And, it's not over.  Ethan can still escalate and he does.  But they're less severe events than before and less frequent.

So we've got a lot of work to do yet. But we're completely thrilled with how he's doing and we're doing little happy dances as we go through the day.

By the way, Ethan is 1 1/4 inches taller than he was before the surgery. :-)

Wednesday, October 15, 2014

Day of Change


Sarah and I would greatly appreciate it if you would drop some change in the Ronald McDonald House box at your local McDonald's today. Ronald McDonald Houses are our home away from home when we travel for Ethan's medical care. Ronald McDonald House means that we have a warm and welcoming place to stay, home cooked meals and a supportive environment while we focus on helping Ethan stay strong and heal. For us and for all of the kids and families like us, please drop by McD's, grab some fries and drop your change in the box, and know that you helped to make a difference.

Wednesday, October 1, 2014

Surgery

Hanging out in
pre-anesthesia
If you've seen our posts on Facebook, then you know that Ethan's surgery went well, and that his spine is now amazingly straight.  You might also know that we got stuck in the hospital after Ethan developed a minor complication, and the doctors had to do a second, brief, surgery.  You know that Caleb spent a few days exploring Seattle with my uncle Phil.  Then, when Ethan's hospitalization got extended, Caleb spent four days at the Hutch School, a one room school affiliated with the hospital.

And you probably know that we're back--very happily so.  

And now for the rest of the story....

PICU
Ethan went straight from surgery to the pediatric intensive care unit.  He was kept intubated and mostly sedated overnight.  'Mostly', because the doctors had a hard time keeping him sedated and he woke up, while intubated, a number of times.  During one of the early waking episodes, we added arm restraints so that he didn't thrash too much or pull out tubes that he shouldn't.  Since he was intubated and couldn't speak, and restrained and couldn't move, it's hard to tell how distressed and agitated he was.  

I can't imagine what he felt like waking up like that.  Anterior/posterior spinal fusion is an incredibly painful procedure.  A couple of the nurses compared it to being hit by a bus.  For Ethan to wake up in the ICU with a tube down his throat and his hands restrained and his body sending a range of wrong signals through the haze of the pain killers.....  Developmentally and with his anxiety issues, there's just no way he could process that.  
Napping in the PICU

Scary doesn't begin to cover it.  I simply can't imagine what that was like for him. 

One of the doctors said that patients who have previously undergone bone marrow transplants can be difficult to sedate because their livers break down the sedatives more quickly. In addition, Ethan's anxiety issues tend to trigger faster, stronger responses for him then other people might have.  

This seems to jibe related to the report that we got from the anesthesiologist.  She said that Ethan required higher levels of sedatives and pain killers throughout the procedure in order to stay comfortable. 

The next day, taking the breathing tube out, or extubating him, became quite a process.  Due to his anxiety issues, we wanted to keep him calm and relaxed.  But we also needed to have him awake enough so that we could be sure that he was breathing well on his own. 

It actually went pretty smoothly.  The docs switched his sedation med from a long-acting one to a short-acting one an hour or so before we wanted to get the tube out.  We also gave him an extra dose of anti-anxiety meds so that they would be fully in his system when we took the tube out.  The respiratory team got all set up with everything they needed close at hand.  Then they turned off the sedative and mostly left the room and waited by the nurses' station.  As we saw Ethan waking up, they swooped into action and quickly got the tube out.  He threw up, but was able to keep his airway clear, and then we were basically done.  We kept some oxygen blowing by his face for a little while, but he was on room air pretty quickly.

Looking at those bent knees,
I guess the pain meds are working.
But was still holding onto a lot of extra
fluid, at this point.
Our time in the PICU varied quite a bit.  There were times when Ethan was resting or sleeping, just letting his body heal.  Then there were times when he was extremely scared and physical.    This seemed especially true at night.  Ethan's third night in PICU, after the breathing tube had been removed, he woke up very scared and upset.   This kid, who had just had plates inserted into his knees, had a rib removed, and had rods screwed onto his spine, stood up in bed.  He was pushing on me and crying that he just wanted to go dive in the swimming pool. 

Then Ethan climbed down, out of the bed, and walked! At 2:30 in the morning, Ethan walked out of his room, down the darkened hallway of the ICU, crying that he just wanted to go to the swimming pool. I was just walking with him, holding his hand. Trying to comfort him a bit, trying to keep him from escalating further before the bolus of Ativan started working.  Telling him that I knew he wanted to go swimming, but the swimming pool was closed right now. He made it about 20 feet down the hallway before the pain and the Ativan got to him and he let me carry him back to his bed.

Not too long after that, the combination of Ativan, sedatives and exhaustion caught up with him and he fell back to sleep.  I talked to our night nurse, who was at her station  looking through a window into our room.  "Please keep a careful eye on him.  If he wakes up again, I think he'll try to get back out of bed."  Then I went back to the sofa bed in the room and went back to sleep.  I woke up again, a couple of hours later, to find the nurse picking Ethan up off the floor.  I think he had woken up and climbed out of bed, but when he got down, I suspect his legs gave out on him and he fell. Thankfully, he hadn't fallen from the bed itself, and it doesn't look like he was injured.  (It was at this point that the staff let me know that they could provide a sitter to be by his bedside overnight to make sure he stayed safe. ((Might have been nice to know that before he fell, eh?))
Caleb and Uncle Phil suspended
in mid-air, somewhere above Seattle.

Daytimes in the PICU were slightly calmer.  Perhaps because it was easier to see when Ethan was becoming anxious and adjust his meds to help him stay comfortable and calm.

However, when Ethan was awake, we were dealing with the fact that he was getting tired of all of these dressings, tubes and wires, that were taped to him.  On the second day, Ethan started picking at the stitches in his knees and we had to replace the steri-strips to keep it closed and then cover those with a dressing to keep them out of sight.

Our last morning in the PICU, Ethan pulled out his port access.  You'll recall that Ethan has an IV port under his skin. By this point, E was done with all of the lines and wires.  He'd already pulled off his EKG leads, and when I blinked, he pulled the access needle right out of his chest.

Sarah and I had been talking to the docs for days about the need to account for Ethan's developmental disability and anxiety in all aspects of his treatment.  The doctors didn't seem to be addressing it proactively and Sarah and I felt that we were bouncing from one issue to another, to Ethan's detriment.

By the point that Ethan took the needle out of his port, the PICU docs seemed to have given up on trying to understand, let alone manage, Ethan's anxiety and behavioral challenges.  They were ready for Ethan to be done with IV meds because it simplified his transfer to the surgical recovery ward.   Once Ethan took the needle out of his  port, the doctors made themselves scarce. There was no discussion at all about whether or not Ethan was behaviorally ready to take oral meds. They hastily wrote orders changing Ethan's meds from IV to oral, and we didn't see any of them again until we were rolling Ethan out the door in a wheelchair to head down to the surgery recovery ward.

Surgery Recovery Ward
When we got down to the surgery recovery ward, we were fortunate to start working with a couple of good pediatricians on the ward.  They took ownership of Ethan's care and immediately got in contact with our wonderful outpatient developmental behaviorist to better understand Ethan's needs and talk about how to manage them.

The brace
Overall, Ethan was in a much better state on the recovery ward.  Once he was stabilized emotionally, we could start working with him in the torso brace he's supposed to wear.  Over time, we started to be able to see how to better mange his pain meds and anxiety meds to help make it easier for him to tolerate the brace.

Ethan transferred to the recovery ward on Friday. By Sunday, we were making decent progress on his mood, stability and familiarity with the brace.  Unfortunately, about that time, the orthopedic team said that they were going to go back in for a brief operation on Tuesday.

They had removed the surgical drain on Thursday, while Ethan was in the PICU.  But, Ethan's spine dressings had continued to show seepage.  The doctors felt that Ethan had a seroma that was seeping fluid from the incision.  The drainage would keep the skin from closing and what would let fluid out, would eventually let an infection in.

Tuesday morning, they took Ethan back to the operating room for an hour long procedure to clear out the seroma.  And they placed two surgery drains, one close to the spine to catch most of the fluid from where the seroma had formed and one closer to the skin to catch anything that the first one missed.
Seepage

Once we got back up to the recovery ward, we talked to the doctors about adjusting Ethan's medications to make him calmer and less likely to pull out the surgery drains between Tuesday and Friday.

Managing the Brace
While all of this was going on, Sarah and I were trying to figure out how to mange the brace.  Or how to manage Ethan and the brace.

Sarah and I were (and are) very concerned about turning the brace into another kindergarten debacle.  We're afraid of forcing Ethan into the brace when he's dead set against it and having it screw up his hard-earned emotional recovery, Not to mention having him reach a point where he completely refuses to wear the brace and thus jeopardizes his physical health in very real ways.
With the train tubes.
Look at that straight back.

We've talked with the docs a lot and seem to have gotten some conflicting answers.  On the one hand, our ortho doc doesn't seem to want to put Ethan in a cast.  He feels that the repair is strong enough that it's not warranted.  We've told him that we're very concerned about Ethan totally dismissing the brace and that we're going to gradually introduce Ethan into the brace and then lengthen his amount of time in the brace.  He's seemed okay with that.

Yet, when he saw Ethan on the recovery ward towards the end of his stay, he seemed dismayed that Ethan hadn't worn the brace more. We don't think he understood that to keep Ethan from pulling out the drain lines, we'd upped Ethan's meds to the point where he wasn't walking around a lot.  But fundamentally, it doesn't feel like we're communicating well with the surgeon about how Ethan's developmental and emotional issues may will affect his recovery.

Treating the Whole Patient
But that just highlights the issue about this surgery, the hospitalization and Ethan's medical treatments in general.
Feeling better and getting out and about at the hospital.

Sarah and I have come to believe, quite firmly, that Ethan is a three year old trauma victim.  We think all aspects of his care and every interaction with a provider need to start from that point.  From a practical standpoint, that means wounds need to be dressed so that a three year old can't pick them apart.  It means anesthesia needs to be started slowly while Ethan is distracted or hiding under a blanket.  It means starting an IV needs to take into account Ethan's anxiety and strict limits need to be observed about how many pokes he can take and how long he can be restrained while the team tries to start an IV.  Most importantly, it means that decisions about whether or not to pursue a treatment need to be seen through the same lens. And when we decide to proceed, we need to take specific steps to reduce the fear and stress Ethan will feel.

Caleb at the helm of the
USS Turner Joy

Before this surgery, I think we thought we were being pretty clear about Ethan's developmental abilities and anxiety. But, the problems Ethan experienced while he was in-patient, and the initial lack of a proactive response from the hospital, really forced Sarah and me to walk through every hospital procedure and translate it for Ethan.  Before the surgery, Sarah wrote up a one page 'Things to Know About Ethan' sheet for the hospital staff.  By the end of his hospitalization, working with two of the pediatricians on the surgical recovery ward, we'd turned that into a 5 page 'care plan' containing both general treatment guidelines for how to work with Ethan and how to communicate with him to very specific breakdowns of most hospital procedures: how to start an IV for Ethan, how to dress wounds, how to start anesthesia, how to give oral meds.

Parts of the care plan are specific to Seattle Children's, and include planning processes for future surgeries there.  But we'll send copies to Ethan's local hospital here and to the University of Minnesota Amplatz, and the document will inform Ethan's care for some years to come. 

Back Home with the Brace
The brace is a work in progress and an ongoing series of negotiations and compromise.   I think Ethan is a little conflicted about the brace.  He doesn't like it.  It's hot.  It's uncomfortable.  It's very difficult for him to sit and move around in (mostly because he can't use his tummy muscles when he's wearing it).  There are times he fights us tooth and nail about it.  Then there are other times when he allows us to put it on him, and he'll wear it for 3 hours, or he doesn't fight us when we expect he will.

There are times when Ethan is really active and moving around and he doesn't want to wear his brace.  The other day, he wanted to bounce on his bed and do forward rolls without his brace.  He was about to give us heart attacks.   Times like those really make me wonder if we'll be able to get through the next three months without seriously damaging the repair work.  For better or worse after the gymnastics episode, we lowered his pain meds.  I hate that he's got to be uncomfortable, but hopefully, he'll listen to his body telling him to slow down, where he wasn't listening to his parents.

Ethan is still on a moderate dose of Ativan, to help him with handle the stress of the surgery, and recovery and *mostly now* the brace.   That's certainly helping to keep him calm(er).  The Ativan isn't a long term solution.  We won't be able to use it for the full three months.

With luck, we'll be able to use this period while his body is still telling him to take it easy, and while the Ativan is still helping him cope, to develop some routines where the brace just becomes something we do.

When you get right down to it, though, if  Ethan decides he hates the brace and won't wear it, I don't know that there's much we can do about it. We can't force this on him without serious consequences to his emotional health. We already broke him once.  We don't want to break him again. Ethan really is in control here.  It's entirely possible that we'll reach a point where we just have to cross our fingers and hope that the repair is as strong enough to hold while he finishes healing.

Caleb  @ Seattle
It was really interesting to watch Caleb during our time in Seattle.  In many ways, he displayed the same flexibility and ability to roll with the changes that is one of his great strengths.  Though there were a few instances where you got a sense that it was all starting to get to him.

Our first week there, my Uncle Phil flew out from Maryland.  He came out just to support all of us, but he thought he could do that best by pal-ing around with Caleb and having fun around town.  It was really wonderful of Phil to come out and do this.  I was surprised when he offered and I was even more surprised when Caleb agreed. Caleb is very much an introvert to start.  And really, the stresses and turmoil of the last five years has given each of us an intense focus on the four of us in this immediate family.  As I told Phil, there really aren't that many adults that Caleb would have let into his space to pal around with for a week.

When Phil suggested this, I don't think he knew how many times Caleb has been to Seattle.  So the theme for their week together seemed to be 'Caleb Shows Phil Around Seattle'. Caleb took Phil to most of his favorite haunts, the Seattle Aquarium, the Space Needle, the Seattle Zoo, the Seattle Harbor Tour, etc., etc..


At one point, Caleb, Ethan and I were in Ethan's hospital room.  Caleb looked at me and said that this trip was a little weird.  When I asked why, he replied, "It's like a fun vacation for me and kind of like a nightmare for Ethan."  I was glad that he commented on the difference because it gave me the opportunity to tell him that this is Ethan's disease.  While Caleb is a great big brother and gives Ethan tons of his time and attention, Caleb also needs to live and enjoy his own life.


Phil had only planned for a week in Seattle and had to get back to his other obligations in Maryland. And as Ethan's in-patient stay went into a second week, we switched gears.  Sarah started telecommuting to work each day and we started Caleb at the Hutch School, a small school affiliated with Seattle Children's.

Caleb was only at the Hutch School for four days, but it was amazing to watch him. For someone who is usually so introverted, he quickly connected with a number of other kids there.  He did a bunch of left brained (learning about salmon) and right brained (cool pastel drawings) school work.  Every Tuesday and Thursday, the Hutch School has group therapy sessions for the kids.  Even though Caleb was only there for two sessions, Sarah and I got the sense that hearing from other kids who are living lives like ours resonated with him.

Whole Lotta Love
It's been a busy month and a half for us.  We didn't originally plan to have the Minnesota trip and the surgery so close together.  It just worked out that way.  Since mid-August, Ethan had 20+ doctor's appointments and procedures, he had one 10 hour surgery, one 1 hour surgery, 3 days in PICU, and 8 days on the recovery ward. As a family, we traveled 2800+ miles by air plus 400+ miles in the car and spent 27 nights away from home for medical care. (Ugh.)

Through it all, we've been felt a lot of love and support from a whole bunch of people, from my Uncle Phil, our wonderful Minneapolis Care Partner Sue Daily, a whole bunch of folks who have donated to the MPS Society, including Natanya Desai, Kate North, Lynda Motiram, Robin Heintz, Barbara Seaward, Joy Killgore and my mother and step-father. Not to mention offers of meals and childcare at various points, and a continuous stream of Facebook and e-mail messages.  A special thanks to Sarah's colleagues at Northwest Evaluation Association.  They really showered us with a whole buncha stuff (and then some) in Seattle. Ethan's favorites were the balloons, by the way.  And there are still a couple of them floating around the house.

We're also very, very grateful to the Ronald McDonald House Charities. We've stayed at Ronald McDonald houses three times.  Two of those times, the length of our stay doubled over our original plan.  But with RMH, it didn't matter.  We had a comfortable home and a supportive environment around us so we could focus on healing.

And now you know the rest of the story.

Thanks, as always, for checking in with us and for your love and support.