Love those peaceful Saturdays!  Rudy has been very mellow today–probably because his night owl behavior was in full force last night.  The docs had been weaning him off of his methadone so they decided to hold that for the day in case some of his fussiness during the day yesterday and last night was due to withdrawal.  He’s on such a minor dose anyway at this point–we have plenty of time to get him off that while we work on the priority issues.  I also think he’s just being fussy like babies are–nothing overly alarming as far as heart rate or saturations.  What baby doesn’t go through phases of fitful sleep?

Speaking of the other issues, when it comes to breathing I think Rudy might just be showing off.  Today’s order was for two 7-hr sprints and he was so relaxed as he came to the end of the first that the team decided to link the two together without a break, so he’s doing one big one of 14 hours.  The team is hoping to get Rudy to a place where he’s on the vent only at night and, provided he keeps this up for a few more hours, he’s almost there.

We have good nutrition to thank for the course things are taking.  The feeds are now at 15cc/hr and there’s been almost no fluid coing out of the JP drain (about 10cc over the last 24 hrs).  As he’s done very well at this level for the past few days, the team decided to up the rate of increase to 1cc every 6 hours.  It seems to be giving him lots of energy to breathe and probably also contributes to his fussiness.  He’s not as lethargic and passive as he was a week ago.  While he was frustrated last night, I was surprised at just how hard he could clench his fists.  Up until now it was pretty easy to open them up, but that’s not the case–he’s got quite a grip. 

His being active does make tending to him a bit more challenging, but I fully welcome it if it’s his way of telling us he’s sick of being in the hospital.  Stay ornery, Rudy, we’ll fight our way out of here!!

We are so grateful for the week Rudy’s had.  It’s Friday evening and Trish and I just switched places.  We’ve learned from experience that things need to be taken slowly with Rudy and we’re hesitant to claim progress prematurely, but we are very encouraged that he’s taken feeds for five days without interruption.  For now, the rate of increase is slower than in the past but that’s just allowing us to watch things more carefully.  He’s about to go up to 14cc per hour so we’re in the range where things got problematic in the past, but indicators look really good–he’s stooling well, there’s no sign of lymphatic leakage and his stomach is emptying well.

There is a huge difference in his breathing.  Amazing the difference some good calories make.  Today’s order was for two 6 hour sprints and Rudy’s making it look easy.  He was a bit fussy this morning so I wonder what Trish was doing to him, but since Aunt Cora and I got here, he’s been very calm and content.  Right now, he’s been enjoying a few hours on Cora’s lap before we have to take her to the airport–thanks to Uncle Brian and the Alabama cousins for letting her join us for the week. 

That’s the report for tonight.  So glad for calm and peaceful days where we can see the progress Rudy is making.  Thanks for continuing to pray for Rudy.

It’s Monday morning here in Santa Barbara and Trish and I just had a quick breakfast out by the harbor before she hit the freeway to LA.  I just checked in with Nurse Veronica and she told me that she was doing some cooking!  During rounds this morning, there was consensus that we should try feeding Rudy again.  The drainage out of his abdomen has been consistently down (40cc over the last 24 hrs) and, more importantly, yesterday’s labs indicated that the percentage of chyle is very low.  I don’t recall the exact unit ratio, but yesterday’s count of triglycerides (which would indicate chyle) was 78.  At the initial trauma two weeks ago it was up over 1000, so we’re hoping that indicates that the lymphatics have healed.

They’re starting out with a mix of special formula with no long-chain triglycerides or fats (as these go right into the lymph system).  5ccs per hour at a somewhat diluted setting and we’ll see how it goes.  Let me spare articulate formulations and simply say:  “PLEASE PRAY!  PLEASE PRAY!  PLEASE PRAY!”  We want to get past this hurdle in the worst way.  Rudy looks really good–the team upped his sprints to 2hrs today as he wasn’t bugged in the least by 90 min stints over the weekend, so we’re hoping to have more positive progress today.

Perhaps a mundane detail, but in the evening Trish and I had together yesterday we put together a new crib for Rudy–at home.  As all of Rudy’s life has been lived out in the hospital thusfar, it struck me as an act of prophetic hope (like Jeremiah buying a field in a land about to be overrun in wartime, declaring that one day it would be habitable again [Jer 32]).  From the time we learned of Rudy’s diagnosis, we put most of the typical baby setup stuff on hold and as you’ve seen by our posts, we are challenged to walk a line between brutal realism and hopeful faith. This action falls in the latter category.  Rudy’s home is not in the hospital.  The bed he sleeps in is much cooler than the one at home, but it isn’t his bed.  I haven’t forgotten about the elevator ride they owe us.  We’ll take it someday.  We’ll get to make that beautiful drive along the coast WITH Rudy and then he’ll get to sleep in HIS bed.  Not sure how that’s going to happen and what further obstacles lie in our way, but this morning I feel the need to express hopeful faith.

Stay tuned for feeding updates!

It’s been a relatively quiet weekend here in the ICU.  I’ve come to take comfort in seeing empty rooms–it usually means less intensity and it also means fewer kids and families in distress.  Speaking more out of my own self-interest, things have been calm in 5453.  The order for the weekend is continued patience as we hope for the fluid in Rudy’s abdomen to subside.  I wish things would move faster, but I’ve learned to take calm and boring over action and excitement–the latter coupling usually isn’t comforting in these parts.

Nurse Nicole might take issue with my assessment of things being calm as our theory of Rudy being part werewolf is gaining some credibility.  Along with fingernails that resemble talons, he tends to be very calm and peaceful during the day, but then fusses up a storm during the night.  There weren’t any distressing numbers, but he managed to set the vent chime off about every 3 minutes, which had her on her feet for about 4 hours.  She came on calling him “Rudy the cutie”, but fortunately I was asleep when she left so I didn’t hear if her nickname had changed.

Watching the chyle drainage from the stomach cavity is probably something I shouldn’t do to closely.  It was down to 30cc on Friday and up to 60cc on Saturday.  More, yes, but we’re still dealing with little quantities.  The trend is down and that’s good.  It’s still being determined whether they’ll try feeding on Monday or Wednesday, but we’ll let the doctors work that out.  Rudy’s situation is all about judgment calls and it’s good to have different opinions playing off each other.  Dr. Andy has kept him on three 90 minute sprints daily and he cruises through them.  He could easily go longer, but the objective is to keep him exercised but not push him until he’s able to take on enough calories to have the energy to breathe well.

Rudy had a chest Xray this morning and his lungs look clear, but there was some concern about whether his heart was enlarged (gulp).  Dr. Maggie came in just now to do an echo as it’s been about a month since they checked and saw that everything was in order–sometimes the imagery on the Xray can be unclear.  It was great to have Maggie check as she felt that, not only was the size fine and the heart clear of fluid, but the function looks better than ever.  So, the ironic pattern is holding–we came for a heart operation, but it’s not the heart that’s keeping us here.

Please pray for this week.  When they start to feed isn’t such a concern as at this point a couple of days here or there don’t matter.  We just really want the fluid issue to be resolved.

Nurse Amy and I are postulating a theory that Rudy doesn’t like mornings.  Today, he started fussing at about 5am and was somewhat agitated right through noon.  He wasn’t throwing major tantrums and his heart rate wasn’t extremely elevated, but his breathing was rapid enough that we ended his first sprint at about an hour.  Perhaps the extended time off the vent over the weekend tuckered him out a bit and there’s no need to rush as we’re waiting on stomach output to resolve itself.  He settled down nicely this afternoon and is just finishing up his second one hour sprint with a bit more comfort.

Not much else to report around here.  Several rounds of doctors have swung through today (ICU team, Surgery, GI, Cardio) and they’re all keeping tabs on Rudy, but as the plan for the week is to wait out the chylous acides there’s not much in the way of orders.  He had an Xray of his lungs today which satisfied everyone and the cardiology team may do some imagery of his heart, arteries and veins just to make sure there are no blockages or anamolies that would be affecting pressures in his lymphatics.  There’s not much expectation that they’ll find anything, but anything’s worth ruling out.

Rudy is bright-eyed and awake right now so I’ll sign off and play with him for a bit.  This afternoon I’ve introduced him to peek-a-boo by covering his face with a blanket and then pulling it off.  To say he enjoys it might be an overstatement, but it sure has him interested.  We’ll see how it takes.

Trish reports that Rudy has been fitfull all day.  Dr. Brill’s main objective today is to get him to calm down as they are concerned that the stomache incision heals properly and doesn’t get comprimised.  There is some debate going on as to whether the fluid is actually chylous as what’s coming into the drain now doesn’t have the typical milky appearance.  Trish just called to say that the GI team just called for Rudy as they would like to do another study to see if everything is sound as far as the GI tract.  So, Rudy is in transport on his way down to the lab.  Sorry if this is vague, but I’m writing from SB.  More detail to follow.