I’ve been thinking about “normal” lately.  It’s easy to think that this journey with Rudy is a temporary episode and that someday he’ll come home and life will get “back to normal”.  We’ve been encouraged by Rudy and his progress and can start to picture him heading home (even if it’s still many weeks away), but are coming to accept that “normal” for our family is going to look different from this point forward.  Trish’s birthday and the rest of our weekend was an experience of this.  Life can’t be ruined because of our child in the hospital–instead our family needs to adjust to how we live life and celebrate milestones with a child in these circumstances.  There are adjustments to be made.  We can’t fight them or ignore them, so it’s before us to accept and embrace them.

So along with celebrating Trish’s birthday, we tried to make room for other “normal” activity.  Saturday morning, Wilson, Max and I went out on Ellwood Mesa for a bike ride.  Good for the soul to not only move around, but to do it on such a perfect day.  As I see some of the weather reports in other parts of the country,  I hate to rub it in, but if riding around your neighborhood on a February morning brings you to views like this you can’t help but get a bit giddy.

Of course, Wilson and Max are not content to let you think that we simply had an idyllic pedal along the coast.  They would have you know that the angle I snapped these pictures from doesn’t clearly depict the huge air they got off these jumps.  Rudy should be advised–as much as we’re eager to get him out of the hospital, his big brothers are constantly flirting with ways to get admitted to one!

After a good morning’s play, Max and I headed down to UCLA to see Rudy.  All has been quiet and relatively uneventful in Room 5453 and we like it that way.  The team started feeds to Rudy’s tummy on Saturday and he’s tolerated it well.  After an initial run of Pedialyte, they switched over to Mommy’s milk and are stepping things up slowly, he’s currently at 8ml/hr and if that continues to go well they’ll bump him to 10 by the end of the day.  So far his stomach hasn’t swollen and from the looks of his diaper those systems seem to be in working order.  Please pray for this over the next couple of days–it’s very encouraging progress, but we’ve gotten about this far before only to have the course reverse itself.  Hopefully, getting some significant nutrition going will allow us to make progress on other fronts.

Speaking of those other fronts, he’s been breathing very comfortably on his trach collar sprints.  He did sprints of one hour on Friday, two hours yesterday, and today he’s going for four.  He’s already been making it very clear that he doesn’t like it when they put him back on the vent in between sprints, but we’re for taking things slowly.  Last time we let him have his way, he got tuckered out after a few days.

Max has been good company here with Rudy, although his effect on the room can sometimes be what you imagine would happen if Shemp mated with a tornado.  He’s enjoyed being in the room with his brother, breaks in the playroom and excursions to the vending machine.

While it’s not the celebration we envisioned (but then neither have most holidays of late), our family sure is excited about Trish’s birthday.  As Trish does a pretty good job keeping vanity at bay, she didn’t let on that one of the highlights this week was a birthday makeover.  There’s a kind organization that comes into the hospital to take portraits of kids and their mommies, so Trish got to join in the fun!  The final result is stunning!

She told me that our plans for the weekend have changed.  Tonight she wants to sit on her bed, eat Pop Rocks and gaze longingly at her Karate Kid poster while listening to Sheena Easton 8 tracks.  She’ll need to get some rest because she was a troublemaker and has to spend all Saturday in the school library with Emilio, Molly, Ally, Judd and Anthony so that they can achieve teenage enlightenment and discover that they, as middle class suburban white kids, are remarkably all the same (who would have guessed?)

OK, that wasn’t the picture.  Here’s the one from this week’s makeover:

About three times the years, but ten times the HOT!  My birthday princess is looking fine!

While I’m posting and boasting, Wilson had a great week as well representing La Patera Elementary at the County Spelling Bee.  His goal was to make it past the first round as he missed the cut last year, and he was successful.  About 150 started and he finished somewhere among the final 20.  As we didn’t have a lot of time to study, our strategy included preparation in some of the terms that have become part of our family vernacular but would likely elude the common elementary speller.  Unfortunately the gambit failed as “hypoplastic”, “cardiothoracic”, “pleurodesis”, and “fundoplication” were not on the word list.  Too bad, Wilson was going to nail those!

Actually forget about  TV, I’ve seen a lot more doctors in person.  The steps taken by the team this week made for a markedly different weekend with Rudy.  The tracheostomy has helped Rudy with breathing on his own.  As I mentioned in Saturday’s post, the team was going to give Rudy a couple of stints off the vent for two hours to see how he did.  He did so well on the first two and actually got pretty agitated when we put him back on the vent (Oscar says that patients sometimes don’t like the feeling of pressure from the machine if they’ve gotten comfortable without it).  So, we added a third on Saturday evening and since he wasn’t exhibiting any discomfort when I had to retire for the evening, they just decided to let him stay off.  The team attempted to put him back on the vent in the early morning hours and he again expressed his displeasure, so they just decided to leave him off.  And he’s been breathing on his own ever since.  Go Rudy!

Even though we aren’t at the point of crafting a timeline for going home, during Sunday morning rounds, Dr. Rick said he wants us to start our education in what Rudy will need when he’s at home.  Again, no specific dates are in sight, but it would be unfortunate to have any delays because of our training.  So, it started yesterday with Nurses Jennifer and Gloria training me in how to suction out the trach.  It’s not that hard and I must be doing it right because Rudy hates it just as much as when the professionals do it.  It might make one a bit queasy, but largely because it’s unfamiliar.  If Trish wants to do all the diapers, I’ll do all the suctioning.

We enjoyed the Monday holiday together with our other kids–simply being able to stay in bed while rain drummed on the roof was a great start.  Trish is headed back to UCLA as I write this and the kids and I will enjoy some yummy chili tonight’s food fairy brought to our porch (thanks!) before getting ready for the week.  We’ll be interested to hear the plan for Rudy’s stomache when the full team rounds in the morning.

After the week Rudy had, I was eager to get back to UCLA to see him.  We’ve written before how it’s usually much harder to be the parent in Santa Barbara than at the hospital when significant procedures are going down, so there were several people who encountered me this week who made mention of the fact that I appeared distracted.  There’s no denying that a trach takes some getting used to, but when viewed in terms of all the other things Rudy’s had sticking out of him, it can be taken in stride.  It is neat to see his face with only the small tape holding the NG tube in place instead of the vent wrap.  Without the hoses coming out of his mouth, he can move around quite a bit more, so we’ve enjoyed making eye contact and having fun today.  He sat on my lap for about four hours this afternoon and things were calm enough to the point where we wondered aloud how Stanford could blow a 20-point lead and lose to Cal–ugh.

Rudy had two stretches off the vent today totaling close to five hours.  He does this with a small oxygen hose pumping some vapor around the hole as his breath doesn’t get the normal humidity we get from breathing through our upper airways, where saliva creates humidity.  (Betcha didn’t know that–who needs the Discovery Channel when you have Rudy’s Beat?)  He got really mad at RT Oscar when he came to put him back on the vent, so I think he’s ready for more.

We did have a consult from Dr. Dunn, the Pediatric Surgeon who is going to be addressing Rudy’s stomache issues.  I’ve spent much time educating myself on cardiac and respiratory issues, but I don’t know yet how to speak Gastro-Intestinal, so that’s tonight’s internet lesson.  The imagery reports we got yesterday indicated that Rudy’s stomache is a bit more horizontal than normal and also has some reflux issues, but there was comfort in Dr. Dunn’s assessment that these were common issues for cardiac babies.  A number of big words were introduced to me which Nurse Amy has been kind enough to repeat several times so I know where to start my education.  It’s looking like Rudy will have surgery on Wednesday where some of this might be addressed and a GJ tube placed–the team will confer on the appropriate game plan in the meantime.

Many procedures have been attempted on Rudy, but today Nurse Amy attempted the most daunting yet.  She came back from her lunch break with hair product and great intentions to try to tame his mane.  It worked quite well for a bit but I don’t think they’ve created a substance with holding power sufficient to keep things in check.  A couple hours later he looked like Heat Miser again.  But Amy should be applauded, because somewhere in the middle of all the primping, Rudy did seem pleased and I was able to snap a picture we’ve been waiting quite some time for: