How is Evan?
The place for regular updates about Baby Evan

This is going to be a long post as I need to cover a whole week of news.
Where do we go from here?  That was the question we set out to answer at an all-hands meeting last Tuesday afternoon. Mom, Dad, Grandma, Grandpa, the head doctor and representatives from each department joined in the meeting.  The Doctor started with a narrative of recent events and then we went around the table giving everyone a chance to share their observations and insights.  At that meeting we came to a consensus that Evans status was still too unstable to move on to HealthBridge.  We agreed the goal is to establish a stable baseline.  Meaning a few days in a row where his meds, poops, sleep patterns, fevers and reflux are stable and similar.  We hope Evan reaches that point over the next couple weeks.
Although we have tremendous faith in each of the professionals here at CHOC, we decided to seek out a second opinion. You can never discount the value of a fresh pair of eyes.  After asking around and searching the web, I found one of the best pediatric neurologists who, coincidentally, was just a few miles away.  He runs a cash only practice and had evaded our radar up until this point as he operates outside of the managed care system.  The upside to a private pay doc was that he called back at 5:30PM to set up an appointment to see Evan the very next afternoon.
For a few days Evan had been experiencing extremely loose stool.  At one point it actually shot up his back and came out the neck of his shirt (it was actually funny at the time!). Since it went on for a few days, the GI doc wanted to re-check that his G-Tube was resting in his stomach and not further down toward the colon.
So off we went on a ride to the x-ray lab.  Good news was Evan fell asleep just before we left the room and stayed asleep until after we returned.  At the lab, I moved Evan to the x-ray table where a doctor was waiting with a fresh batch of barium smoothie.  He turned on the camera and began injecting barium into Evans G-Tube.  It only took a few seconds to see the injection flowing through his GI tract and thankfully everything looked perfect.  It’s likely the antibiotics previously prescribed were the culprit so we cut them out and put him on clear fluids for the rest of the night to give his system a chance to settle down.  In the morning we started him back on his formula and he has been reasonably well since then.

Wednesday afternoon the new neurologist came by as promised.  He spent about an hour reviewing Evan’s file and consulting with the Medical Director of the Pediatric Intensive Care Unit.  He then came in asked us lots of background questions and examined Evan.  We spent the next hour hearing much of the same news that the CHOC neurologist had previously delivered.  The difference was in the delivery and detail.  When we were done talking we had a much clearer understanding of why the various parts of the brain were damaged and how this affects what Evan is doing.  To our surprise he then had a couple recommendations.  The first was to continue to raise the baclofen dose and secondly the doctor ordered a fresh MRI.  We had the MRI from 4/8 (4 days after the accident) and were surprised to learn there would be significant changes in just a few weeks.  Everything moved quickly and the MRI was scheduled for mid-day Thursday.
In order to make sure Evan was completely still for the MRI he was going to need anesthesia which would be administered via IV.  This meant we had to stop his formula again to make sure nothing was in his stomach and overnight the nurses put an IV line in his foot.  At 11:30 am we rolled down to the pre-procedure room where Evan promptly feel asleep.  He actually remained sleeping during the hour-long MRI and never even needed any anesthesia. If you have ever had an MRI you know it is extremely loud, so I figured him sleeping through it wasn’t a very good sign.
(Now would be a good time to stop reading and make sure you have some tissues nearby.)  We received the first report early Thursday evening and it wasn’t good.  In just a few weeks the changes in Evan’s brain were dramatic.  His brain actually shrank and the areas which had been deprived of the most oxygen shrank the most.  In some areas there were actually holes where there had previously been healthy brain tissue.  While this was what the doctors expected to see, it was quite shocking to us and dramatically reduces the chances of a significant recovery.
Ok…deep breath…that was not easy to write about.
Last piece of news is that we received a visit from a pediatric neurosurgeon who had an interesting idea to help ease Evan’s discomfort.   He is currently investigating some ideas.  Stay tuned for more on this development…

Not much to say here just wanted to share some pictures of Evan sleeping. The first pic is just a regular afternoon in bed. I snapped the second a couple nights ago. After hours of being inconsolable I took Evan for a walk in his wagon, he likes going very fast. On our 5th lap he feel asleep. Considering how long he had been awake I knew he would sleep for several hours. I wanted to go home and was afraid to move him to bed for fear I would wake him. It was 11PM and a slow night so the nurse offered to keep him in the wagon at the nursing station.

It’s been a couple of days since our last update. We were hopeful to post something new and exciting about Evan’s progress, but there is not much to report.
We visited HealthBridge (see previous post) last Thursday.  Our first impression was more of a kindergarten than a hospital.  The staff was incredibly friendly and caring, and it was clear that they would do their best to advance Evan along to as far as he can go.  It’s actually a fairly small facility and after subtracting the long term residents they only have nine beds that turn over on a regular basis.  We are near the top of the waiting list and Evan will move there sometime in the next few weeks.  In the mean time Evan continues to receive wonderful care here at Children’s Hospital and we are in no rush to leave.

Before the weekend we got the post-PEG (see previous post) go-ahead to give Evan a real bath, so he’s had one each day. We fill the tub with blankets and towels to make it soft and comfy for him. Evan’s bath last night was so relaxing, he fell asleep right afterward!
The Docs continue to adjust Evan’s multitude of meds in search of the elusive “perfect cocktail”.  Recent changes include upping the Baclofen to the max 40mg/day.  He is a bit more flexible, opens his eyes more often, and has longer moments of calm between contractions.  They have also added a small regular dose of antibiotics to aid his digestion. Also beginning tonight we are going to eliminate the scheduled dose of chloral hydrate and try to get him to sleep for longer periods on his own.  May take a few nights to get him on a more regular schedule, but it’s worth a try…

Today is Evan’s 18 month birthday which had us reminiscing and looking at pre-accident photos.  Judging from the comments on this blog and all the other emails and cards, we realized just how large the Evan Army has grown. Amazingly, so many of you never had the chance to know the healthy Evan, so we wanted to celebrate his 1 1/2 birthday and share some of our favorite photos with you.

Yup, we felt it…being on the fifth floor of a hospital built on rollers, we felt significant swaying from this afternoon’s 7.2 magnitude earthquake!  Other than rattling our nerves, everything is well here at the hospital but we haven’t been home yet to check for any damage.
The new chloral hydrate regimen worked pretty well the first night with Evan sleeping through the night. Unfortunately, these last two nights, Evan woke up at 3am with a bowel movement.  Both days,  he stayed up from 3am till nearly noon until finally crashing after more than eight hours of his contractions.
Over the past two days, we placed Evan in the wagon and took him for some rides around the pediatric floor.  He enjoyed the movement of the ride and even had his eyes slightly open to see the bright lights and activity around.  This is something we will continue to do daily.
Today things were a little better.  Evan took a couple of naps on his own without drug.  In fact he has been down for three hours as of now.  Dena came by again and really worked him over, even climbed into his crib for several hours. He appeared to tolerate her more than the last few visits and perhaps even enjoyed it.  We saw Evan’s eyes peak open a few more times.
Today his Baclofen dose was increased by 30% and will continue to increase every three days up to 40mg per day (he’s at 32mg as of today).  This is the muscle relaxant which we hope will reduce his stiffness and contractions.
When the doctor came in this morning, he again brought up the idea of transferring Evan to Healthbridge.  It is a pediatric medical and rehabilitation hospital in Orange, about 25 miles from our home.  We hear they have wonderful programs from which Evan will benefit when he is ready.  Until then, our goal is to get Evan to be more calm and to adjust his baseline to reduce the extremes in his day.

It’s been 48 hours since Evan’s PEG was inserted.  Since then he is back to his regular cycle of going through long periods of sleep followed by long, painful periods of what we call contractions.  For hours at a time he stiffens up, arches his body and cries followed by a brief periods of calm before the next contraction start back up again.  Holding him, massaging him or talking/singing to him does not appear to make it better, so we are left unable to help Evan through his contractions.  This is hard.
The doctors continue to adjust his medications.  Starting tonight we are going to give him a larger dose of the chloral hydrate (sedation medicine) to try to get him back to a normal sleep cycle.  I wish we had a more significant update, unfortunately progress seems to happen slowly.  Please keep Evan in your prayers and we hopefully will have better news for you soon.

Today was sort of a big deal.  Realizing that we are in this for the long haul it has become increasingly apparent that we needed a longer-term feeding solution. The tube in the nose was clearly causing Evan discomfort and it would have to be swapped out regularly causing even more grief.  The hope is that through intensive therapy, Evan will re-learn how to swallow and eat on his own.  Until then EVERYONE recommended a PEG (percutaneous endoscopic gastronomy) which is a tube through the skin straight into his stomach. Despite how crazy this sounds to most of us, it is actually a fairly simple procedure which they perform right in the room (with a little extra equipment rolled in).
Although simple, they treat it like surgery so Evan had to have an IV line put back in to keep him hydrated since nothing can go into his stomach for the 6 hours before and 24 hours after the procedure.  The problem is that Evan could not receive any of his oral (meaning thru the tube) medications during this time.  This included his calming drug of choice, the chloral hydrate, which we and much of the staff learned today is no longer manufactured in rectal form nor in IV form.  So Evan was basically on his own without a way to sedate him for the better part of the morning.  This made the hours leading up to noon quite unpleasant for Evan and for us watching him suffer.
At about 11:30 all of the necessary staff and equipment began to arrive in his room.  By 12:15 we were asked to leave and within about 20 minutes they were done and we were back in with Evan. The report was that everything went smoothly other than Evan refusing to open his mouth so that docs had to pry it open.  The sedation meds used to knock him out during the procedure wore off around 2:30 and pissed off Evan was back, so they started him on morphine.  It took three hours, three doses of morphine and some Tylenol with codeine to finally get him back to a restful state.
When he first woke up after they inserted the PEG, he went right back to swiping at his face. Funny thing is they had removed the nose tube and tape while he was asleep so there was nothing to swipe at.  Fairly quickly he gave up on the face and then to our surprise figured out where the new tube was and started trying to get to it.  Just like yesterday we think this is a good sign that he was able to connect a localized pain and deliberately moved his arm to get at it.  It is now about 9pm and he is still sleeping.  The plan is to keep him as calm as we can overnight.  Early tomorrow morning they will be able to begin feeding through the PEG and remove the IV line.

So right now as you can see in the after photo, he just has a simple tube coming straight out of his belly. After 6-8 weeks of healing they will be able to replace the tube with a Mic-Key button. This is a somewhat flush port with a cover which you just pop open like a gas tank when it’s time to feed him and the rest of the time it is closed and he can do anything he is capable of including laying on his stomach and getting in a bathtub or pool.

Sunday afternoon Evan was moved from the PICU (Pediatric Intensive Care Unit) to the regular Pediatric Floor where they handle the less acute patients with a higher nurse to patient ratio. While we were not happy about leaving the comfort and familiar surroundings of the PICU, we were lucky enough to be placed in a large private room and directly across from the nursing station.
Because the Peds nurses were not as familiar with Evan and having more patients to take care of, Evan was given more frequent doeses of the chloral hydrate to put him to sleep quickly overnight Sunday.  This resulted in him sleeping for the better part of 15 hours.  He finally woke up around 1pm on Monday and wasn’t very happy for the next 5+ hours.  He was very tense and agitated and constantly swiping at the feeding tube in his nose with his left hand.  At one point successfully pulling it out about 8 inches!  I guess it’s positive that his brain is working well enough to understand where the discomfort was coming from and how to deal with it.  They also made a few other adjustments to his meds, changed the type of formula (the new one is Kosher and won a Chef’s Best Taste Award!).

Mid-afternoon Mommy brought Alex to visit and see the new room before heading over to the family Passover Seder. I got Evan all ready too, but he had to stay here with me 🙁