T+19: New Digs

As I was writing this, Ethan decided that he wanted to go for a walk on the ward.  And the big news is that he wanted to do it enough that he tolerated the mask he has to wear.  Here's Ethan and Grandma Lilianne, both with big smiles on their faces.

We walked around the ward for about five minutes, and then he got carried around the ward for another 10 minutes.  He had a great time, but it may be a few days before he's ready for a game of hide and seek on the ward.

We now return you to our regularly scheduled blog update.
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The last few days have alternated between busy and hectic.  But Ethan's condition has been stable, he's continuing to heal, and overall he's doing very well.

On Saturday, we moved to a new hospital building.  The old building served both adults and kids.  The new building is a dedicated children's facility just across the river. The hosital staff had been planning this move for 18 months.  They had really thought things through and the move went really smoothly.

Sarah and I were most concerned that Ethan would rebel against being strapped to a guerney while wearing a mask (to him catching an airborne infection) for the 30-45 minutes it would take to transport him.  Fortunately, we'd learned our lessons from transporting him up and downstairs for the CT scans and when it came time to put him on the gurney, we just swaddled him up really tightly and he stayed pretty calm throughout the move.


The new hospital is amazing--or at least the patient rooms are amazing, since that's mostly what we've seen so far.  The room is easily twice as large as the one that we've been in over the last month, and it's state of the art.

The first third of the room is primarily for medical staff.  The supply cart and linens cupboard can be refilled from the hallway without the staff having to come into the room.

The middle third of the room is Ethan's space.  He  has four TVs he can see from his bed:  a big screen 55 inch with video conferencing capability, two smaller 30 inch screens next to that, and another flat screen on a swivel arm that he can pull into bed.   Each of the screens can run TV, in house movies, internet (w/ wireless keyboard), wii video games, DVDs, and an iPod dock.  He can control a video monitor outside of his door that says if he's asleep or awake or in a good mood, or on a restricted diet, and he can e-mail his doctors or nurses with questions.  Or at least he could if he could spell and type.  (Though he does make a good try of it!)  The LCD monitor on the swing arm is also a touch screen controler for all of the other gadgets.

Sunrise over Ethan's room.
On the ceiling, just next to Ethan's bed, is a row of computerized lights.  You can use the touchscreen to set them to different color patterns like a yellow and red sunrise, a purple sunset, a rainbow, green northern lights, etc.  It's really over the top.

The white board in our old room has been replaced by a floor to ceiling 3 foot dry erase board that we can write on or he can write on to keep track of meds and schedules.  We've reserved the bottom third of the board is reserved for Ethan to write on.

The other side of Ethan's room is thought of as parent and family space.  There is a computer worstation, a table and chairs, convertible sofa and a hospital recliner (as opposed to a home recliner, the former being about 1/2 as comfortable).

The whole thing is pretty stunning and it's quite a change from Ethan's last room.

Medically, Ethan is doing very well. We're at the point in all of this where we're trying to convert most or all of Ethan's IV meds to oral meds so that we can go outpatient.  UMinn tends to keep patients on IV nutrition when they first go outpatient, so Ethan's almost certainly going to be hooked up 16-24 hours a day for a while when we get back to the Ronald McDonald House.

Ethan's got 20+ doses per day of 8-9 medications.  His stomach is still very shakey, some of the meds cause additional nausea and some of them just taste yucky.  Morning and Evenings are the big times for meds.  We usually try to give him a couple of milileters, then wait a couple of minites before giving him more. Doing it this way means that it can take an hour or an hour and a half to do them all.  But spacing them out helps his tummy recover in-between and means that if he throws up, most of the previous meds have had time to absorb and we don't have to redo as many of them.

The only abnormality that we're still trying to get a handle on is Ethan's glucose levels.  His levels have been all over the place.  Sometimes he's normal without insulin, and sometimes he spikes to 200 or more and they have to start the insulin back up.  The endocrinologist, Dr. Moran, says that the infection he had likely stressed his pituitary gland, impacting his insulin production.  She says it's almost certain to recover in the next couple of weeks or so.  It may be that Ethan will be on insulin when he gets released, which is okay.  But right now, his levels are fluctuating too much for us to monitor and adjust to at home.  So we need to get a handle on that.

All in all we're doing great.  Ethan is getting stronger day by day, and now we are certainly comfortable in these new digs.   Some pics from the last week or so follow, below.

Thanks, Jen!!

Snuggling.

Doing a search on the internet. I think he was researching
universities in Malaysia. Maybe he's thinking of
going to college there.

In the ambulance, moving to the
new hospital.

Rolling out of his old room.
The new room is huge!

This may be a little excessive.

Part of the parent/family space.

Caleb bowling with our wonderful Care Partner volunteer,
Sue, back at Ronald McDonald House during the hospital
move. 

Comments

wow! room looks amazing, the kind of thing that makes what you're going through that little bit more comfortable. Does this mean when we skype we can be seen on a 55" monitor?! Loving the boys snuggling photo. Speak soon, take care x
Cheryl Garris said…
Love all the new pics and that new room looks amazing! I am sure it will make the rest of your stay there more comfortable. Glad to hear overall that things are going well. :) We actually had 1 day of 70 degree weather in Portland! Woohoo...back to rain today of course. lol Hopefully by the time you guys head back this way the sun will be here for the long haul!
Kelly Waddell said…
Wow!!! I'm in awe of the new hospital room. That is wonderful!!! Even so, praying that you are all not there long. :)

Kelly
One Funny Quote said…
We went through a room change mid transplant also, double the size, what a boost it was for everyone. Can't wait to read the update that Ethan is home. Hope the glucose gets figured out quickly and Ethan is on his way:)B.