One of the programs the pediatric department has to engage families and patients in their care and recovery is called the Pediatric Bead Program.  Every week or so I’m given a checklist of treatments and I mark the ones Rudy had done the week before…things like “dressing changes, ETT or trach insertion, extubation, heart catherization, ICU admission, IV start, peripheral lab draw, procefure, surgery, PT/OT, test/scan, transfusion, line removal”, etc and Rudy gets a bead for every one.   It’s a great program (especially for the older children) to help commemorate recovery milestones and open up communication for families as they talk about what each bead means.  Well, today Rudy gets to add his 6th “Holiday” bead to what is becoming a very long strand.  At the rate he is going, we’ll head home with a “bead curtain” reminiscent of the one my brothers had hanging in their room back in the 70’s…they were so cool!

     Rudy had a relatively quiet day…OT and PT came by for treatments (two more beads), Dr. Dunn and the surgical team came by for a quick check-in, the cardiology team stopped by during afternoon rounds and took their look, the PICU resident, fellow and attending doctor all touched base with me and, of course, Rudy enjoyed visits from several of his nurse friends.  Nurse Aliza went to Disneyland yesterday and thought of Rudy…bringing him a set of very festive mouse ears!  (So thoughtful!)  Hence, our spirited St. Patty’s Day greeting above.  He also has a new sea turtle friend named Seamus O’Turtle thanks to our friend Sarah. 

     We’re so grateful for a fun day…and another solid one in terms of progress.  Rudy’s feeds were bumped up to 10ccs an hour and he did well with three 3-hour trach collar sprints.  There were no other changes ordered to his treatment plan.  Our focus continues to center on feeds and vent weaning.  Only one rescue dose of meds was needed this morning to calm him down and, like yesterday, he spent the rest of the day with stretches of being alert and calm and then drifting off to sleep for a couple of hours.   I’m encouraged but also guarded about his progress with feeding so far…14 ccs/hr has been his breaking point in the past so I’ll be ready to celebrate when Rudy tolerates more than 14ccs an hour for a day or so (get that bead ready!!!).  The fluid drainage continues to be minimal so if the output remains the same or lessens, the surgical team will recommend removing the drainage tube later this week.  Dr. Dunn feels at this point the body will be able to absorb the amount that is draining!  Yippy (tube removal = one bead)!!  

     Thank you for your prayers!  What an amazing breakthrough it will be to get Rudy’s feeds firmly established…ultimately back on breast milk and then (still praying for) a go at nursing!!!  May it be so…

In celebration of St. Patrick’s Day, I’ll leave you with an Irish blessing…

For Rudy,

Our little leprechaun is holding steady on his feeds!!!  It’s 10:30pm here in California and Rudy is tolerating his 5 ccs an hour quite well…his belly isn’t any bigger, he had a stool this afternoon and Nurse Lindsay assures me she hears good bowel sounds with her stethoscope so it appears we may be back on the road to recovery!  Yippy  I arrived in L.A. around 12:30pm and found Rudy awake and alert when I got to his room…he drifted off to sleep shortly after I arrived and had a nice nap.  I had business to take care of around the hospital and did so while Rudy slept and then came back to an awake, alert little boy again!  It is soooo nice to see Rudy awake and not distressed.  He hasn’t needed any rescue doses of meds today and has been sailing through his 2-hour sprints on the trach collar!  It is a very different story around here compared to 2 weeks ago…we are grateful for the shift.  The cardiology team rounded this afternoon and Dr. Brian et al seemed pleased with Rudy’s condition – it’s always reassuring to see big smiles on the docs faces.  So, we will continue with the feeds tonight, Rudy will get a break from the sprints until morning and hopefully rest quietly through the night…although 4am does seem to be a bewitching hour for him. 

Thanks to Nurse Kelly Rudy is all ready for St. Patrick’s Day…when I arrived this afternoon, Kelly was visiting from the adult CTICU upstairs with festive buttons in hand to adorn Rudy’s blanket.  His little shamrock says “Kiss me I’m Irish”…well, after meeting Katie Manning’s Daddy, it would be more accurate to say “Kiss me I know someone who’s Irish” but, hey, Rudy won’t pass up an opportunity to get a kiss or two! 

Things got so busy over the weekend I didn’t have a chance to report that we had a little bit of drama on Friday morning…Rudy’s trach worked it’s way out and, for some reason, the RT and team of nurses that came to our aid couldn’t get it back in.  Rudy ended up with a trach a whole size smaller than what he had originally.  After giving him a couple of hours to regroup, RT Lyle came in and attempted to put the 4.0 back in…it still wouldn’t fit but he ultimately got a 3.5 safely secured.  Dr. Andy decided it best to leave it and if the smaller trach becomes problematic in the future, they can always dilate the trach hole and eventually get the 4.0 in again.  He has been breathing with the smaller trach all weekend and is doing fine with it…the only problem is that the air leak around the trach that was setting off the mind-numbing vent alarm is even more pronounced now that the trach is smaller and, therefore,  setting off the alarm even more!  Ha Ha  Thankfully tonight Rudy is positioned in such a way that the alarm is resting quietly as well…aaahhhhh, so peaceful! 

Friday was also a big day because Rudy got to meet his Aunt Cora who flew in from Alabama to spend the week in Santa Barbara…unfortunately, Rudy slept through her visit here at the hospital but his older sibs sure are enjoying the creative fun and loving attention Aunt Cora brings with her wherever she goes…a big thanks to Uncle Brian and cousins Joshua, Heather, Kaitlin and Jessie for sharing her with us!! 

I know Rudy is the wrong gender but he should be recognized as a honorary member of his big sister’s Girl Scout Brownie Troop because he has sold more cookies than the average girl scout!  Ha   Most of the activity in Rudy’s room today was various hospital staff in search of a yummy afternoon snack…and Rudy & I were more than happy to help meet that need with the stash of classic girl scout cookie favorites we have piled up in our room.  We’re probably violating some PICU policy but it has been a productive day of sales!  Ha Ha   A big thank you to all our friends and family both near and far who helped to make this year’s cookie campaign a smashing success…

It’s hard to believe it’s Thursday already…this week has flown by.  Rudy had another calm day for the most part.  He did have several episodes this afternoon when his heart rate dropped significantly, popped back up and then dropped again.  His issue is usually a high heart rate so this was a little concerning at first.  They ran a blood test and determined his electrolytes were low so he’s being treated with potassium and magnesium.  Rudy was doing really well with his 2-hour trach collar sprints earlier today but because of his low heart rate, his last sprint was cut short so he’ll start back up again in the morning.  His heart rate is still a little low but he looks comfortable and his color is good.  For now, Rudy is comfortably sitting in his vibrating, bouncey chair looking forward to a visit from aunt Cora (flying in from Alabama) tomorrow.  Fun…Fun! 

     The little man is 23 weeks old today.  The day came and went with little drama which is always nice.  To celebrate I was successful at fixing Rudy’s fishy mobile which has been sluggish for a couple of weeks.  I don’t know how much longer it will last but for today he was able to enjoy the familiar sounds of a much loved crib companion…he isn’t reaching for the flying fish yet but he sure does like to stare at his little friends as they go round and round.  As with his breathing and feeding, Rudy has alot of ground to make up with his OT and PT.  He hasn’t had many treatments at all since his first stomach surgery 2 weeks ago and I’ve noticed he resists any movement of his arms and legs.  Prior to the hiccups of last week, the range-of-motion exercises we were doing seemed to be loosening things up so it’ll be back to square one again when OT and PT start back up again.  He did gain some ground off the vent today, though.  Dr. Andy ordered his sprints on the trach collar to be bumped up to 90 minutes which he did 3 times today with great ease!  There is still fluid draining from his stomach cavity but it continues to decrease slowly.  The surgical team came in this morning during early morning rounds and estimated we might be able to start feeds again early next week.  We’ll see…

     All in all, we are moving forward and in a more encouraging place than last week, however, I did have a hard time believing today that we’ll ever leave this place.  Even if Rudy does get to come home in a few weeks, it won’t be long until we’ll have to come back and do it all again.  My prayers are starting to shift a bit…I’m focusing more and more on quality of life prayers for Rudy.  It is taking him such a long time to get to a stable place and even though I know the odds of him leading a “normal” life are slim, I do pray for a life that is lived more outside of hospitals than in.  I pray that the non-heart issues he is facing will ultimately resolve themselves and he will not develop chronic struggles with his digestive system, respiratory system and the failure of other organs.  This has certainly been my hope (and, quite frankly, a naive expectation) from day one but I have also learned in the almost 6 months since then that there are NEVER any guarantees no matter how aggressive the treatment may be and the statistics for babies like Rudy can leave you feeling pretty grim.  I’ve found that the non-crisis days, like today, leave me with too much time to think…and that’s when fear sets in.   I’m so glad I can bring those fears before God – I just wish I was better at letting them go before they get the best of me.  So, tonight I end the day thankful for the calm day Rudy had but also challenged in truly giving my fears over to God.  ‘Praying the next couple of days for Rudy are days of great gain…on all fronts.  Thank you for carrying us all through your prayers…

Wow, today was one of those rare days when the bulk of our family was together in Santa Barbara doing those normal “pre-Rudy” activities.  Rolf took advantage of being home on a Saturday morning and took his kayak out for a little ocean excursion; the kids played nicely together as they experimented with mentos mints and Coca-Cola over at Lake Los Carneros and then headed home to jump on the trampoline; I caught up on some “house business” and began preparing for Max’s big birthday bash tomorrow (he turns 10 on March 10th!); Rolf took the kids to “Lizard’s Mouth” – a nearby hiking area with fun boulders to scramble up and caves to climb in AND Max had a basketball game which our dear friend, Lisa, took him to while the rest of us attended the Santa Barbara Rescue Mission Recovery Program Graduation…always an amazing event that touches us deeply.  Phew, it was a very full day and while we scurried around to all the various activities, little Rudy worked hard on his breathing.  He sprinted with the trach collar for a couple of hours this morning, took a 2 hour rest back on the vent and has been back on the trach collar since 2pm this afternoon.  We’re keeping close tabs on him because this has happened before when he did great out of the gate but tired after a couple of days.  At this point, since we’re stuck waiting for the fluid to stop anyway, we’d be in favor of starting him slow on the ventilator wean.  Speaking of lymphatic fluid, his output is less today so we hope this means the it will stop completely very soon.  We look forward to celebrating Maxi tomorrow afternoon at “Golf ‘n Stuff” and Rolf will head down to be with Rudy after the party.  We’ll be able to give you a more detailed update on Rudy’s condition then.  It sure was hard to leave Rudy yesterday knowing he’d be “alone” for a couple of days, but we are so grateful for the PICU team taking such great care of him and the CTICU team of friends who drop in on Rudy often to let him know he’s not alone!  Bless them all…and you for your continued support from all corners of the world!

 Our little man had a sleepy day…just what the doctor ordered.  With the help of pretty regular doses of meds, Rudy rested all day long.  He even slept through a visit from Daddy!  Rolf arrived at the hospital around 10:30am to see me and Rudy and check in with doctors.  We didn’t do much…in fact, we pretty much sat quietly in Rudy’s room and dozed off a bit but we didn’t have to “do” anything.  It was just great to be together and reassuring for both of us. 

 It was important for Rudy to continue to rest today.  Dr. Judith (this week’s attending) wanted all of Rudy’s energy to go toward the healing of his stomach wound so everything else was put on hold…no vent weaning, no feeds, etc…  They’ll, most likely, give him one more day of rest before starting the wean again.  It’s definitely a balancing act because giving him time to rest is crucial right now but we also don’t want him to rest too long on the vent and lose significant ground on the weaning process.  The GI team is recommending Rudy not be fed through his g-tube for approximately 2 weeks.  This will hopefully give the lymphatic system time to heal and strengthen…after the 2-week break, Rudy will be fed a special formula with virtually no fat for about 6 weeks.  If that goes well, then my milk can be introduced again.  So, we’ve definitely hit a speed bump with the recurrance of this chylous fluid but everyone feels this won’t be as complicated as the chylothorax issue.  We certainly pray this is true.  It’s unclear how long this will delay our homecoming but we knew better than to get too attached to a specific timeline anyway.  The waiting game continues.  For now, I’m praying the fluid draining from his stomach cavity continues to decrease and that tomorrow he will have times of being awake and alert but comfortable at the same time.  Thank you for your continued prayers for patience and healing!!!  Rudy sure is getting quite a reputation as a trouble-maker…charming, no doubt, but a trouble-maker nonetheless.  I keep telling Rudy to get it all out of his system during this hospital stay because I expect life at home to be calm and uneventful!  Ha Ha