‘Just a quick nighty-night from PICU Rm. 5453 as Rudy is finally asleep which is my  cue to go grab a bite to eat and head to bed myself.  Rudy struggled to find a comfortable rhythm all day.  He was fitful and in constant motion…since the goal was to keep Rudy calm, he got some heavy doses of pain meds that didn’t seem to help for the longest time and then, finally, he crashed late this afternoon in time to head down to radiology for the upper GI test that Dr. Shew requested.  The preliminary results show that the intestines are working properly and the chylous fluid is not coming from a leak in the bowels/intestines.  This is helpful information but doesn’t tell us where it is coming from so we’ll continue with the plan to allow Rudy’s stomach wound to heal, watch the fluid  output and pray it stops soon.  The special stitches Dr. Shew used to close Rudy’s incision need to stay in approximately 4 weeks… these stitches and the drainage tube would not be things that would keep Rudy in the hospital normally but because there are a few other things going on, our hope for a homecoming in possibly 3 weeks seems a long shot at this point.  We just have to wait and see.   Rudy remained on the vent all day with no sprints on the trach collar because he was so fussy…so maybe after a good night’s rest, we can start back on a course for weaning.  Speaking of “good night’s rest”, I’m ready for one.  Goodnight everyone…thank you for the calls, emails and blog comments.  I may be a little weepy tonight but I feel like we are surrounded and uplifted and that is of great comfort.  Blessings…

…safe and sound.  Rudy’s body is very active with his feet kicking and his arms in constant motion, but he is still knocked out from the anesthesia so he must be dreaming about an amazing adventure.  🙂  I’ll know more about a game plan after morning rounds but for now the plan is to lay low today and keep Rudy as comfortable as possible.  Dr. Shew said the skin around Rudy’s incision is not in good shape…pretty saturated and understandably weak so keeping him still and giving the area time to heal is crucial at this point.  I did get to hold him for a couple of hours late last night for which I’m thankful as holding him may need to be put off for a couple of days.  I’ll sign off for now but will be back shortly…

Rudy sure does set his own pace…from day one.  It’s a little after 5am Tuesday morning and we just got back from taking Rudy to the OR.  Overnight the hole in his stomach incision got noticeably bigger and the surgical team was concerned that other things besides the chylous fluid (like his intestines) might start to push out so they ordered him down to the OR.  The plan was set around 2am but because of another late night case, the call for Rudy didn’t come until about 4:45am.  Dr. Shew will be conducting the procedure.  He is going to close the incision up tight as well as put a drainage tube into his stomach much like the chest tubes he had to drain the chylothroax.  Normally, drainage tubes aren’t used for this kind of chylous because, unlike with the chest cavity, the fluid isn’t isolated in one area and therefore the drainage tubes aren’t very effective.  In Rudy’s case, however, Dr. Shew and his team feel it’s important to get as much pressure off the incision as possible so eventhough the drainage tube won’t drain all the fluid around the stomach, any release of pressure caused by the fluid build-up is helpful at this point.  The presence of the drainage tube may even encourage a more continual flow of the fluid but, again, the priority right now is to give the stomach every opportunity to heal…then, we’ll tackle the fluid issue itself.  Dr. Shew came up to the room to talk with me personally before we took Rudy down to the OR…he is quite familiar with Rudy as he oversaw the TPN study Rudy participated in back in October so Rudy is in good hands.  The procedure should take about an hour and a half.  I’ll let you know when he is back.  Thank you for your prayers!

Yesterday was so lazy that I forgot to post an update so here’s an early morning recap for you…

Rudy is doing really well post-op…he continued to get some pain meds yesterday and had one pretty fussy spell in the a.m. but was awake most of the afternoon – alert and calm.  So nice to see!!!!  Everything was cancelled yesterday…no OT, PT or RTs.  The pediatric surgical team came in to check Rudy’s in incision and dressings.  The only real action for Rudy yesterday was various nurse friends stopping in to say “hi” and the constant (mind ripping out) chime of the vent because of Rudy’s trach leak.  I think we first mentioned this a couple of weeks ago so keep in mind this has been going on FOR A COUPLE OF WEEKS.  With all the amazing, miraculous things they do in this unit, being able to adjust the vent to accomodate the trach leak isn’t one of them!!  Ha Ha

So, today the plan is to start taking baby steps…they’ve come down a little on Rudy’s oxygen support and will attempt short sessions off the vent today.  He’ll get a little exercise today and I’ll get to hold him a bit before I head home to SB for the weekend.  They’ve already begun administering some meds through the g-tube and will begin feeds through it tomorrow!!!!  Of course, they will start VERY slowly but  it will be great to get started.  Rolf and Max will be here over the weekend to cheer Rudy on in the feeding game along with the staff so he’ll have great support!!!  I’ll share more later…Nurse Jennifer just brought me a beautiful, homemade birthday cake!!!  It’s time for a little “birthday cake” breakfast  🙂

The precious one is back safe from the OR.  The pediatric surgical team member who accompanied Rudy back from surgery said he did great…was well-behaved (apparently Rudy has quite the reputation for being a trouble-maker) and the procedures went as planned.  He has a bandaged incision going from the bottom of his open heart scar down to right above his belly button…so at least it’s all very neat and linear!  🙂  The feeding tube was placed  just to the left of his scar and extends out about 8 inches.  Right now, of course, he is knocked out (dreaming about something) and resting.  We’ll have to wait a day or two to start the feeds into his stomach through the g tube so although the surgery went well, we won’t know for sure if all the plumbing will work properly for a few days.  He’s back to having no tubes in his nose…no tubes in his mouth…and looking very handsome!  I’ll post pics later today!!!  God is good…all the time.  Love to you all from Rudy’s room.

I woke up in a daze and haven’t talked to anyone in charge yet but the night nurse said Rudy was scheduled for 8:30 am and would transport to the OR at 8am!!  He should be leaving in just a few minutes!  I’m confident Rudy will be safe through surgery but there is a pretty heavy cloud of doubt hanging over my heart this morning that the “fix” to his stomach will actually get him past the feeding challenges…my doubt isn’t based on anything specific other than past disappointments probably… 

Years ago, Rolf and I attended this little storefront church in South Central L.A. where the African American pastor would preach his entire sermon in English and then AGAIN in Spanish!  It made for a long church service but he was so amazing and I remember one service where he repeated “nunca dura” (not sure if I’m remembering my Spanish correctly but you get the point) over and over again.  “No (never, none) doubt”…”No doubt”…he passionately proclaimed.  Funny how, 15 years later, this simple message from an inner city storefront preacher comes to mind as a helpful reminder – God is in control no matter the outcome. 

I’ll let you know when he is back to the room and settled!  Thank you for your loving prayers…