Hooray!  Hooray!  The little superstar passed his swallow test!!  It was really quite remarkable to watch the images on the flouroscope…you could tell right away that the contrast fluid was going down the way it’s supposed to.  Speech therapist Carol conducted the test and gave Rudy the contrast through a syringe at first, halfway through the test she said, “He’s really sucking on this syringe, I’m going to try a bottle”.  The minute she gave him the bottle, he latched onto it like a pro and drank from it with no problem.  The whole thing brought me to tears.  OT Nichole came down to watch as well and we gave each other a big hug in celebration of Rudy clearing yet another really big hurdle.  Like I told Dr. Rick when we returned from radiology, it’s just so nice to have a definitive, no-doubt-about-it, POSITIVE result where Rudy is concerned!   Everyone who heard the news was quite excited for Rudy and his BIG step toward home.

     There was alot of talk about discharge details today so that certainly added to the excitement.  We’re still a couple of weeks away from bringing Rudy home (at least) but it is helpful to get started on the many details that need to be addressed.  I go to CPR class tomorrow morning  and get trained to do CPR on babies with a trach.  Rolf and I both need to practice suctioning Rudy’s trach and learn how to change the trach completely as that will need to be done each week. We’ll need to learn how to care for and administer feeds through his g-tube, etc.  We need to find Rudy doctors up in SB and start getting things settled for him at home.  Wow, there are so many things to think about right now!!

     I tried to put aside the rush of details in my head this afternoon and focus on a little sucking therapy for Rudy.  He is clear to start the non-nutritive sucking  therapy  so we tried it for the first time.  I brought him to the breast after pumping empty (he’s not allowed to ingest the breastmilk yet) and let him “find his way”.  It’s definitely a new feeling for him and I’m not too sure what he thought of the whole thing but he did finally relax and got comfortable sucking.  He isn’t quite latching on securely but he’ll get there…it’ll take some practice and I think he’ll be more motivated to latch on when he’s allowed to drink the milk while nursing.  So fun and crazy!!!   One of the charge nurses said she has never seen a baby as sick or as intubated as long as Rudy do so well at the swallow test or take so quickly to nursing…our prayers are being answered.

     So, the process continues forward…Rudy is currently at 28ccs/hr on his feeds through the g-tube.  They’ll, most likely, introduce breastmilk tomorrow and it could take a couple of days to see if the chylous fluid will return.  If it does return, he’ll go back on the Tolerex formula and I’ll look more closely at what it will take to skim my milk of it’s fat.  If it doesn’t return, then we can get rid of the Tolerex finally start using  the MEGA-supply of mama’s milk we have stashed away in the unit!  Rudy will spend a total of 22 hours off the vent today which means they will bump it up to 24 hours tomorrow!!!  At that point, he’ll stay off the vent and they’ll monitor him closely for a couple of days before declaring him “vent free”.  Other than that, he has a couple of meds they need to start weaning him off of and the surgical team will remove his “frankenstien stitches” early next week.  Things are falling into place…finally! 

     We’ll never know what tomorrow is going to bring but it sure is wonderful to end a day with Rudy with a strong sense of hope for a brighter tomorrow.

I don’t have much to report this evening as the swallow test was rescheduled for tomorrow at 11am.  ‘A little disappointing only because I’ve been waiting soooo long to get going on this non-nutritive therapy but it’s not a big deal to wait another day.  What this means, though, is that they are going to keep Rudy at his current setting of 27 ccs/hr, they’ll have to stop his feeds tomorrow morning before the swallow test, and then we’ll pick up on the feeds at 27ccs/hr again after the test…we may not get to 30ccs tomorrow afterall but, again, hopefully it will be a short wait. 

Other than the disappointment of the short delay on the swallow test, today was uneventful.  RT Oscar was assigned Rudy today which was fun as we hadn’t seen him in a few weeks.  Nurse Sandy made me laugh out loud when she came back after lunch sporting a gorgeous 3 diamond ring a little freaked-out…it belonged to another nurse friend of hers and Sandy tried it on for fun while they ate lunch together.  Her friend suddenly got paged to go down to the OR and left in a hurry WITHOUT her ring!!!  Nurse Sandy was so nervous she was going to lose her friends ring she ended up taping it to her finger…what a hoot!!!!  The ring was returned at the end of the shift and Sandy was definitely relieved!! 🙂

I’m so pleased to report that Rudy had another stable day…our focus continues to be vent wean and feeds.  Rudy had two 5-hour sprints and, once again, handled them well.   They’ll continue to increase his sprints by an hour each day until we get to 24 hours.   The GI team is recommending we continue Rudy on the Tolerex feeds until we reach 30 ccs an hour and then introduce breastmilk again.  His feeds were bumped up to 12 ccs/hr today and he had 3 really good poopy diapers so things are moving through!  His fluid output remains at 30 -40 ccs in a 24 hour period and his belly measures consistently the same size…another indicator that things are moving through.  The surgical team feels his stomach wound is healing well and will take out the sutures in 11 days and the drainage tube in 10 days.  That should give Rudy enough time to meet the 30ccs/hr goal and attempt breastmilk before the drainage tube is removed.  Rolf and I feel good about the proposed plan and pray that all goes according to the plan!!!

The best part of today was the long stretch of cuddle time we got this afternoon.  Rudy sat up for the longest time on my lap and then we both fell asleep for a bit.  Precious moments…

Another highlight was a surprise visit from Cesar and his parents Maria & Enrique.  What a treat it was to see this special family and how sweet of them to take the time to visit Rudy while in the hospital for one of Cesar’s follow-up exams.  He looks wonderful and is doing well with his new heart!  Their visit was an encouragement as is Rudy’s current upswing.  ‘Praying the trend continues!

     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…