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