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!! 🙂
Nurse Sandy's new acquisition!
Rudy had a great day off the vent and will continue his sprint until 2am. He slept a good bit and had a long stretch on my lap…a nice day!
Sorry for the delay in getting an update out…’hope it wasn’t cause for worry to our faithful “Beat” readers! 🙂 I ended up holding Rudy last night after a late dinner until 1:30am so my usual evening post got sidelined. I’ll be sure to post a longer update later this evening but, for now, I’m encouraged to report that Rudy continues to move forward!
He did great with his 18 hour trach collar sprint yesterday so the order for today is 20 hours…Nurse Practitioner Anita said yesterday that once he is weaned off the ventilator they’ll want to watch him for a few days (possibly a week) before sending him home – we’re getting very close to that 24 hour goal so the next several days will be key in terms of determining whether or not he’s ready to be off the vent completely…you may recall that he made it 5 days off the vent before but he definitely looks like a different baby this time around…not labored in his breathing at all. We’re encouraged.
His feeds are going well too! Rudy is now up to 26ccs/hr and our goal is to get him to 30ccs by tomorrow afternoon. Once he hits 30ccs/hr, then we will introduce my breastmilk again. If he tolerates the full-strength breastmilk and there is no drainage output, then the drainage tube will be removed sometime this week. Please pray for this specifically…that Rudy’s body will respond well to breastmilk and soak it up like a sponge!!! This, too, will be a key turning point for Rudy. We’re scheduled to take a trip to Radiology (hopefully sometime today) for a swallow test. We need the test done before Rudy and I can begin non-nutritive suckling therapy…it’s something OT helps us with initially and then I can do it with the help of our nurses but it’s basically a process where I pump myself empty and introduce him to the breast. He’s not ready to take in milk orally yet but if we can teach him how to latch on now then he’ll be ready to go when the time comes…again, though, this all depends on wheather or not his body will absorb breastmilk so there is alot emotionally riding on the next couple of days for me.
So, hang tight…I’ll let you what comes of this swallow test later today! Big hugs from Rudy’s room…
From Rudy’s new room, I can look across the nurses’ station to his old one and it brings back memories of those first days when this whole place was so unfamiliar.I remember being overwhelmed by mysterious pieces of equipment being wheeled around.I remember trying to divine the purpose of many procedures I had never seen before.I remember the parade of people coming in, introducing themselves, their specialty and then examining Rudy.The raw intensity was such that most of the names escaped me well before their bearer even left the room.
A few repeated faces started to distinguish themselves amidst the blur of those first few days.Rudy’s condition was very tenuous at that point and there was lots of attention being paid to him and all the foreign numbers up on the monitors.The doctor with lively ties seemed to be in the room quite a bit, watching carefully.Like everyone else, he watched the numbers tick by, but gave equal amounts of time to watching Rudy—noting his skin tone, the flare of his nostrils and the cadence with which his chest would rise and fall.Even when he was dealing with other kids in the unit, most of his passes by the room included a quick scan and status check.
It was only the most disciplined restraint that kept us from constantly cornering every doctor for detailed explanations on what they were doing and seeing.There was an instinctive sense that hovering over the staff would interrupt their work and divert the attention that needed to be paid to Rudy.But even if he couldn’t give a running commentary, the doctor with the ties always seemed to stop at just the right time to give us an update on what was going on.
Dr. Henderson?Dr. Haroldson?Doctor Richardson?For some reason it took me quite a few quiet checks with nurses to get straight on the name, but finally I got it that the Doctor with the ties was Rick Harrison.Remembering his name at this point isn’t much of a challenge as Rick is the second intensivist who has done the bulk of the rotations during Rudy’s sojourn here in the ICU.
I’m not sure how one could navigate such a journey as the one we’ve been on without trust in the people we simply need in order for Rudy to have a chance.As I’m continually impressed by the giftedness and knowledge of most every nurse, tech and therapist, I have nothing but awe left for the doctors.In position, but more importantly in competency, Rick is at the top as he brings incredible expertise and clinical experience into the very emotional arena of very sick children and the fretful parents that accompany them.
As much as I’d love to cling to the notion that no one knows my child better than I do, I probably let go of it well before Rudy was born.No one loves him more, but it only takes one visit in rounds to be reminded that there are levels of detail I’ll never understand and questions I wouldn’t even think to ask.For Rudy’s sake, I’m grateful there is expertise that far surpasses our own.I’ve come to see that his treatment rarely involves black-and-white decisions; but an involved sequence of judgment calls requiring knowledgeable coordination of disparate and often intricate steps.We are grateful for the many weeks that Rick, with his measured and seasoned expertise, has played this central position.
A good doctor at this level is deeply knowledgeable, drawing on science and experiences with thousands of patients.An exceptional one also recognizes that each patient is unique and at some point departs from the textbook conventions.We have often heard Rick remind the doctors in rounds that Rudy has his own norms.He is probably more intricately aware of the data than anyone else and would never flippantly dismiss it, but his overall assessment leaves room for common sense and basic observation.As helpful as science is, a skilled clinician knows when it should be trumped by simply looking at whether the patient looks peaceful or distressed.
We never lose sight of the fact that Rudy’s condition has us in a place of dependence and we are so grateful that one of the key people we are leaning on is one we trust so deeply.Trish and I have daily discussions about Rudy’s course of treatment, and more often than not they touch on Rick’s opinion.Rick’s esteem among his colleagues seems to match ours as I can’t recall anyone being offended by the many times we’ve asked if he’s been consulted.It was only in gathering my thoughts to write this that I discovered that Rick wears another hat—as Medical Director for the Mattel Children’s Hospital.As far as we can see, they sure have the right guy in charge.
We place our trust in Rick not only because of his technical competency, but also because of his ability to appropriately straddle clinical distance.This journey is about my kid and I’m a human being going through emotions that I’ve never experienced before as I try to comprehend realities I never dreamed I’d have to face.So, I need guidance from human beings, who never lose sight of the seriousness of the situation or some form of necessary objectivity; but don’t engage without emotion.They hurt with us; are frustrated with us; know the process well enough to identify milestones worth celebrating; and introduce well-timed humor amidst circumstances so intense it would never be expected.In light of this, my most vivid memories of Rick do not center around medical details, but on human interactions:celebrating when Rudy peed enough; overseeing Rudy’s first two extubations; losing more than a couple nights’ sleep at home pondering Rudy’s condition; feeling sad and frustrated with us when we had to go the route of the tracheostomy and feeding tube; and stopping in on an off day to see Rudy and Trish after hearing of the chylous fluid in Rudy’s stomach.
Rick describes himself as “the doctor no one wants to see”; because dealing with him means you have a very sick child.Point taken, but given that I have no choice over the condition Rudy was born with, I can’t tell you how glad for the many times we have seen Rick.
Trish and I had a rare Sunday together with the older kids here in Santa Barbara. Started out rainy and then gave way to crisp, clear skies with plenty of wind. I just called down this evening to get the update from UCLA and encouraging progress continues.
Nurse Bobbie reported that Rudy had another good day–14 hours off the vent and continued steps up on the feeds so that he’s now at 21cc per hour. She added on the detail that they turned off the TPN and it took me a few moments into the conversation to realize just how significant that is. TPN stands for “Total Parenteral Nutrition”, or intravenous feeds. A few of the previous attempts to feed him got to a point where the TPN was weaned a bit, but never even close to the point of getting turned off. He’s had it since he was born and, now that they’re getting close to the 30cc feed target to his tummy, the team felt it was time to shut it off. Celebrate the milestones. Yahoo, Rudy, get ready for the next course!
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!!
Sure, we know that Rudy’s ability to breathe on his own should probably be the primary factor in the decision, but Trish and I would also like to let it be known that eventually the alarm from the vent will lead to our own institutionalization. We’ve mentioned before that the leak around the trach sets off an alarm on the vent. There’s a medical reason for this. The leak is a good thing, but I can’t really tell you why after having to sleep next to the machine last night. You can’t shut the alarm off, but you can disable it for a few minutes which means the nurse needs to walk over about every 3 minutes. Might want to reserve a few extra beds on the psyche floor downstairs. I think we’ll all be going together.
We’ve told you it’s annoying, but it may be better to let you hear for yourself. Turn your volume up as loud as it will go and then play the clip repeatedly for about 3 hours. For bonus points, try to take a nap. You’ll see why we celebrate that they can turn the machine off as Rudy is able to go on collar sprints for 6 or 7 hours now. But we still can’t get the sound of that alarm out of our heads…sometimes it’s even louder than the voices.
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.
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!!!
I LOVE sitting up!!
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!
Alrighty, today marks week 24 and Rudy continues to march forward. His trach collar sprints were lengthened to 4 hours so we are getting closer to getting rid of the ventilator! Earlier this morning there was talk of introducing breastmilk again but that has been put on hold until the PICU team consults with the GI folks again. It would be advantageous to feed him breastmilk while the drainage tube is still in so we can see real quick if chylous is accumulating again, however, Rolf and I were concerned it would be too quick of a change since he’s only been feeding for a couple of days…he’s getting nutrition from Tolerex (a low-fat formula), he’s tolerating it so far and he’s comfortable so we’re not opposed to giving him a few more days to stabilize. So, we’ll see what the team thinks after consulting with the GI specialists. As a result, he’s still at 10 ccs of formula an hour and doing well with it.
Speaking of breastmilk, it appears my idea to figure out a way to “skim” my breastmilk isn’t such a crazy notion after all. The reason Rudy’s system has been unable to tolerate my breastmilk has to do with its fat content. The long chain tryglicerides (fat) contained in breastmilk are absorbed into the lymphatic system and end up draining out the chylous fluid. As a result, treatment for chylous invovles a medium chain triglyceride-enriched diet (i.e. Tolerex). One day a few weeks ago, I left some breastmilk on the counter and when I came back to it, it had separated and it dawned on me that maybe there’s a way to skim the fat off the milk which, then, might possibly allow it to get absorbed into the body. I shared my idea with a couple of the fellows who were open to discussing it more and then I talked with Christy (lactation nurse) today who said she worked with a mom about 4 years ago whose 4-month old baby had a long battle with chylous fluid and she ended up doing just that!!!! She found a “spinner” that would separate the milk and Christy had a device that could test the fat content to make sure it was low enough. This mom gave the non-fat breastmilk to her baby and the baby tolerated it well…after a while, she gradually increased the fat in the milk until ultimately the baby was on “full-strength” breastmilk. Isn’t that amazing? Anyway, it gives me something to research and a known case to bring before our medical team if Rudy’s case comes to that. At least there’s hope that if his body doesn’t absorb my breastmilk when we try it next we still may have a “modified” breastmilk option! If nothing else, it keeps my mind busy…
Our little monkey enjoyed sitting up today while on my lap…here’s a little peek:
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.
Nurse Aliza brought her regards fom Mickey!
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…
An Irish Prayer
May God give you…
For every storm, a rainbow,
For every tear, a smile,
For every care, a promise,
And a blessing in each trial.
For every problem life sends,
A faithful friend to share,
For every sigh, a sweet song,
And an answer for each prayer
For Rudy,
An Old Cradle Song
Sleep, my babe, lie still and slumber,
All through the night
Guardian angels God will lend thee,
All through the night
Soft and drowsy hours are creeping,
Hill and vale in slumber sleeping,
Mother dear her watch is keeping,
All through the night
God is here, you’ll not be lonely,
All through the night
‘Tis not I who guards thee only,
All through the night
Night’s dark shades will soon be over,
Still my watchful care shall hover,
God with me His watch is keeping,
All through the night