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!!!
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.
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
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
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!!
Meeting Aunt Cora
Well, I’ve rambled on way too long because here it is almost midnight!!! I guess it’s time for bed…after Rolf’s post about hope, my favorite verse has been swirling around in my head so I’ll share it with you as I say “goodnight”…”May the God of Hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13
It’s Monday morning here in Santa Barbara and Trish and I just had a quick breakfast out by the harbor before she hit the freeway to LA. I just checked in with Nurse Veronica and she told me that she was doing some cooking! During rounds this morning, there was consensus that we should try feeding Rudy again. The drainage out of his abdomen has been consistently down (40cc over the last 24 hrs) and, more importantly, yesterday’s labs indicated that the percentage of chyle is very low. I don’t recall the exact unit ratio, but yesterday’s count of triglycerides (which would indicate chyle) was 78. At the initial trauma two weeks ago it was up over 1000, so we’re hoping that indicates that the lymphatics have healed.
They’re starting out with a mix of special formula with no long-chain triglycerides or fats (as these go right into the lymph system). 5ccs per hour at a somewhat diluted setting and we’ll see how it goes. Let me spare articulate formulations and simply say: “PLEASE PRAY! PLEASE PRAY! PLEASE PRAY!” We want to get past this hurdle in the worst way. Rudy looks really good–the team upped his sprints to 2hrs today as he wasn’t bugged in the least by 90 min stints over the weekend, so we’re hoping to have more positive progress today.
Perhaps a mundane detail, but in the evening Trish and I had together yesterday we put together a new crib for Rudy–at home. As all of Rudy’s life has been lived out in the hospital thusfar, it struck me as an act of prophetic hope (like Jeremiah buying a field in a land about to be overrun in wartime, declaring that one day it would be habitable again [Jer 32]). From the time we learned of Rudy’s diagnosis, we put most of the typical baby setup stuff on hold and as you’ve seen by our posts, we are challenged to walk a line between brutal realism and hopeful faith. This action falls in the latter category. Rudy’s home is not in the hospital. The bed he sleeps in is much cooler than the one at home, but it isn’t his bed. I haven’t forgotten about the elevator ride they owe us. We’ll take it someday. We’ll get to make that beautiful drive along the coast WITH Rudy and then he’ll get to sleep in HIS bed. Not sure how that’s going to happen and what further obstacles lie in our way, but this morning I feel the need to express hopeful faith.
It’s been a relatively quiet weekend here in the ICU. I’ve come to take comfort in seeing empty rooms–it usually means less intensity and it also means fewer kids and families in distress. Speaking more out of my own self-interest, things have been calm in 5453. The order for the weekend is continued patience as we hope for the fluid in Rudy’s abdomen to subside. I wish things would move faster, but I’ve learned to take calm and boring over action and excitement–the latter coupling usually isn’t comforting in these parts.
Nurse Nicole might take issue with my assessment of things being calm as our theory of Rudy being part werewolf is gaining some credibility. Along with fingernails that resemble talons, he tends to be very calm and peaceful during the day, but then fusses up a storm during the night. There weren’t any distressing numbers, but he managed to set the vent chime off about every 3 minutes, which had her on her feet for about 4 hours. She came on calling him “Rudy the cutie”, but fortunately I was asleep when she left so I didn’t hear if her nickname had changed.
Watching the chyle drainage from the stomach cavity is probably something I shouldn’t do to closely. It was down to 30cc on Friday and up to 60cc on Saturday. More, yes, but we’re still dealing with little quantities. The trend is down and that’s good. It’s still being determined whether they’ll try feeding on Monday or Wednesday, but we’ll let the doctors work that out. Rudy’s situation is all about judgment calls and it’s good to have different opinions playing off each other. Dr. Andy has kept him on three 90 minute sprints daily and he cruises through them. He could easily go longer, but the objective is to keep him exercised but not push him until he’s able to take on enough calories to have the energy to breathe well.
Rudy had a chest Xray this morning and his lungs look clear, but there was some concern about whether his heart was enlarged (gulp). Dr. Maggie came in just now to do an echo as it’s been about a month since they checked and saw that everything was in order–sometimes the imagery on the Xray can be unclear. It was great to have Maggie check as she felt that, not only was the size fine and the heart clear of fluid, but the function looks better than ever. So, the ironic pattern is holding–we came for a heart operation, but it’s not the heart that’s keeping us here.
Please pray for this week. When they start to feed isn’t such a concern as at this point a couple of days here or there don’t matter. We just really want the fluid issue to be resolved.