Greetings from Camp Wanna-Be-A-Doc!

I’ve had a running joke with the team here that I’m one day hoping to earn a “Junior Doctor” patch.  Well, it looks like that’s coming true as Rudy’s room has become kind of like camp.  There is a number of things we need to demonstrate competency at before Rudy can go home and, consistent with her temperament, Trish has asked for a list to be compiled which is now posted on the closet door.  This weekend Nurse Lindsey is walking us through the day and every time we successfully perform something she notes it on the chart.  Sometimes she quizzes us and we even get to practice some things on a very creepy looking doll before we move to Rudy.  So far, I’ve received merit badges for trach tie changing, trach suctioning, dispensing meds through the G-tube, G-tube cleaning and securing the pediatrician.  Tomorrow morning, I’ll hopefully earn my CPR badge–leave it to me to make this a competition, but I guess I’ve always been motivated by sticker charts.

Since I mentioned her, I just need to say that Nurse Lindsey is the GREATEST NURSE IN THE WORLD!  Yeah, she’s highly trained and very skilled at providing acute care for patients who need it.  Really grateful for that, but she wins this approbation for stopping at Starbucks on her way in this morning to bring me some coffee.  Instead of needing to stumble down into Westwood myself, I got to start my day lounging around in my PJs with Rudy here in the room.  Florence Nightingale never did that!

The Great Nurse Lindsey!
The Great Nurse Lindsey!

While there’s all this activity to keep me occupied and entertained, Rudy’s impressing us all with the great strides he’s making.  We turned off the feeds for an hour twice yesterday and let him try to take the 30cc by bottle–success!  Today the team decided to try to compress the feeds to move from constant drips to “bolus” feeds–where it all comes in one shorter burst (as it would in a meal).  We were going to proceed incrementally by spreading 90cc over two hours and then to one and try a bit by bottle every now and again, but on the first feed this morning we put 45cc in a bottle which Rudy devoured.  So, we filled another bottle and he pretty much gave his vote with regard to proceeding incrementally.  It was no fluke–he’s done it twice more, so the order was re-written for Rudy to make the call–he can feed 90cc by bottle every 3 hours, but if he’s sleeping or just doesn’t seem to feel like it, we can put the balance in the G tube.  He would appear to have his father’s feeding habits.

On the down side, I’ve re-discovered what I had forgotten over the last six years:  all that food going in has to come out in some form and a diaper’s seal far from impenetrable.  Full breast-milk feeds have resulted in technicolor emissions that register in multiple dimensions.  His brothers will marvel at the sounds and I regret that I only brought one pair of pants with me…

It is a very happy adjustment to be thinking concretely about bringing Rudy home.  There’s some open speculation as to what our time frame is at this point, but I suspect we’ll gain some clarity on this on Monday when the new attending comes on.  I’ve been reflecting on the post I wrote awhile back on the Stockdale Paradox and how our thinking has undergone a shift.  Back in January, we had to hold forth that we would prevail over this circumstance without any real idea of how this would come about.  I’m certain I didn’t think we’d be headed into April, but here we are.  There were twists and turns enough to turn unrealistic hope into insanity, but here we are.  Given that we’ve been here six months, we’re not up in arms if it extends a few weeks more.  It’s just such an encouragement to be viewing things through a new lens.

I’m looking forward to a quiet night here with Rudy and hope he rests well for tomorrow when Trish and the kids will be coming for a visit.  It’s actually been almost two months since we’ve all been here together.  Word has gotten out among the staff that the floorshow will be here in full force tomorrow–can’t wait.  These poor ICU people–who will entertain them when we leave?

PS–speaking of fun, Livy made another appearance on the web as Greg Lawler shared everyone’s intrigue about how her trademark “green tooth” dangled precariously without falling out for so long.  Good news everyone–it finally “fell” out (with a little help from Daddy during a wrestling session).

14 thoughts on “Greetings from Camp Wanna-Be-A-Doc!

  1. What a rollercoaster! The thrill and exhileration wrapped up with apprehension and cautiousness! I like that Rudy is making the call with the feeds…isn’t that how kids like it to be? Their way or the highway, or so they think. Then again, they are probably right most of the time!

    Continued prayers and well wishes from CT!

  2. Oh, wow! I read the posting twice, to just let it all sink in. I picture the family together and so positive. Hugs to you all.

  3. Ha, now they are putting you to the test, instead of you grilling them! We are so excited for all of you and hope you have a super day tomorrow all together. Glad the wrestling did the job for Livy-Jim-Bob-Lou.

  4. Have a fun week and Camp Rudy. Hope you’ll be at Camp Home soon. Keep up the great work Rudy. We are still praying for you & your family.
    Hugs & kisses.

  5. Yippie, have agreat few days together we are rooting for you, Rudy.
    There are many more fun days to come hopefully sooooon in S B.
    Prayers and Kisses Oma Opq

  6. Rudy….you have no idea how great it’s going to be to be home!!!!!! no idea…..but you will find out soon! Home sweet home….soon.

  7. Question of the Day: does ‘Dy-Dee Diaper Service’ deliver to S.B…? or do you allow the other kids to take ownership in their lil’ bro?

  8. It sounds like you will be on your way home soon?! HORRAY! I am so thrilled for you. I hope that you’ll be there when we come out to visit so we can stop in and meet the amazing Rudy! If not… we’ll be just as happy knowing that you’re home at last!

    Thank you for all the encouraging comments. It’s all a bit terrifying knowing that ICU will be in our near future again. I guess it’s part of the HLHS journey.

    We’re praying for you all and espeically Rudy!

  9. there are so many special people in this world, as we go through such struggles in life….we open our eyes and hearts to so much…….peace, keep it going Rudy…..great….Dawn’s Mom

  10. So happy Rudy is making such great progress. Rolf, I keep telling you, “You need to write a book”. Your humor is such a winner. You really could help other parents trying to get through these type of experiences. Really! I just want to see your elevator ride in full technicolor and on a big screen. It’s coming soon! Love, Cousin Dianna

  11. I am with cousin Dianna. A film crew is a must for a full length feature film of the ride that is long awaited and long over due. I hope I can be at the bottom of the elevator as the doors open to cheer you on.

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