Patience: Watching, Waiting & Holding Ground

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.

My Garden Gnome is Better Than Your Garden Gnome!!!

It comes with the territory these days that we have home projects stacking up with little hope of getting them done unless it’s on the fly. As I pulled into the driveway this weekend, the untended lawn was too much to ignore and I tried to flip through my mental calendar for an evening to get to it after work. Not sure when it happened, but as I pulled out this morning I noticed that it had been mowed. Come to think of it, as I haven’t mowed the lawn since September, I’m thinking this wasn’t the first time the magical garden gnome has visited. I have some guesses as to the identity, but I already know he/she is better than yours. Your garden gnome just stands there looking cute, but doing nothing. Mine does actual work.

Thank you, mysterious Garden Gnome! The little encouragements go a long way.

Maybe Rudy isn’t a morning person…

Nurse Amy and I are postulating a theory that Rudy doesn’t like mornings. Today, he started fussing at about 5am and was somewhat agitated right through noon. He wasn’t throwing major tantrums and his heart rate wasn’t extremely elevated, but his breathing was rapid enough that we ended his first sprint at about an hour. Perhaps the extended time off the vent over the weekend tuckered him out a bit and there’s no need to rush as we’re waiting on stomach output to resolve itself. He settled down nicely this afternoon and is just finishing up his second one hour sprint with a bit more comfort.

Not much else to report around here. Several rounds of doctors have swung through today (ICU team, Surgery, GI, Cardio) and they’re all keeping tabs on Rudy, but as the plan for the week is to wait out the chylous acides there’s not much in the way of orders. He had an Xray of his lungs today which satisfied everyone and the cardiology team may do some imagery of his heart, arteries and veins just to make sure there are no blockages or anamolies that would be affecting pressures in his lymphatics. There’s not much expectation that they’ll find anything, but anything’s worth ruling out.

Rudy is bright-eyed and awake right now so I’ll sign off and play with him for a bit. This afternoon I’ve introduced him to peek-a-boo by covering his face with a blanket and then pulling it off. To say he enjoys it might be an overstatement, but it sure has him interested. We’ll see how it takes.

A peaceful end to a full weekend

Dude! Dude! Today we had Max’s party! Dude, we went to Golf n Stuff, dude! It was so fun, dude! Dude, we played video games, mini golf, dude-dude, awesome go carts and bumper boats-dude! It was so awesome, dude!

What a great day for our (almost) 10 year old, who’s excitement can be measured by the frequency with which “dude” is interjected in his speech! Today was a great celebration with maxs-party-013 our family and Max’s friends. Perhaps like never before, I have such an appreciation for opportunities to watch my kids laugh and have fun. On top of that, it turns out our experience with all of the alarms going off in Rudy’s room makes surviving the sensory overload of a video arcade much easier. On the other hand, I don’t think I’ve ever been more aware of how many places there might be to pick up bacteria–tables, chairs, golf clubs, steering wheels, game controls… I think I’m on my way to developing into one of those OCD people who wash their hands every 5 minutes. I found myself longing for a dispenser of hand sanitizer.

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We were able to enjoy Max’s celebration so fully because the reports from UCLA the last two days have been reassuring. We’ve come to see that it usually takes 2-3 days for Rudy to stabilize after a traumatic episode and this time the team seemed to arrive at equilibrium late on Friday. As Trish posted, the trach collar sprints went very well and this afternoon the team returned him to the vent after 25 hours off. He wasn’t really under any stress, but they just decided to not push him too hard. We’re happy with that–you’ll recall the last time we let him go off and running he crashed after about four days. As it will take a couple weeks for the stomach issues to get worked through, there’s no need to rush the breathing. We’re just so glad he can do what he’s doing. Tomorrow AM he’ll get a lung Xray and we’ll be very interested to see how his lungs look. The nurses and I are laughing because for the last 30 minutes he’s actually been setting off an alarm because his O2 sats are too HIGH (over 95%). I’m not sure if we’ve ever heard one of those before. He keeps setting it off and each time a nurse needs to come in and push the button. I think he’s very proud of this new trick and the fact that it gets him attention (even if he’s asleep). GO, RUDY!

Being able to sit here with Rudy at 10pm on Sunday night is also giving me a chance to sit and think back over our full weekend. As I wrote about a “new kind of normal” earlier in the week, it really feels like we were able to taste some of that this weekend–a richness in our family amidst the unknown and the challenges. I would also be leaving something out to not talk about the Rescue Mission Graduation Ceremony we had last night. I am so proud of the team I get to be a part of and the way it’s used by God to change lives. We celebrated 13 heroes last night who came into recovery a year ago–from the streets, prison and who knows where else–and were now sitting before us radically transformed. Clean, sober, surrounded by friends, reconciled with family and looking toward the future. I don’t think any of them could have had hope enough to picture themselves sitting there last night a year ago, but every day they summoned enough strength and trust to get up and continue on–or at least just stand. They leaned on God and the people around them and that brought them through. Their courage inspires me and is something I’ve thought of often as we’ve navigated this journey with Rudy, where the daunting fight can only be met by faithfully taking the next step we see before us. The same God that worked such miracle for Leslie, Lacey, Sherry, Sharon, Marie, Cindy, Jennifer, Marlin, Andrew, Anthony, Donnie, Jake and Kevin is with Rudy. Being reminded of his love and power was so helpful. Thanks friends, for what you’ve taught us!

Another Trip Downstairs

Trish reports that Rudy has been fitfull all day. Dr. Brill’s main objective today is to get him to calm down as they are concerned that the stomache incision heals properly and doesn’t get comprimised. There is some debate going on as to whether the fluid is actually chylous as what’s coming into the drain now doesn’t have the typical milky appearance. Trish just called to say that the GI team just called for Rudy as they would like to do another study to see if everything is sound as far as the GI tract. So, Rudy is in transport on his way down to the lab. Sorry if this is vague, but I’m writing from SB. More detail to follow.

A New Kind of Normal

I’ve been thinking about “normal” lately. It’s easy to think that this journey with Rudy is a temporary episode and that someday he’ll come home and life will get “back to normal”. We’ve been encouraged by Rudy and his progress and can start to picture him heading home (even if it’s still many weeks away), but are coming to accept that “normal” for our family is going to look different from this point forward. Trish’s birthday and the rest of our weekend was an experience of this. Life can’t be ruined because of our child in the hospital–instead our family needs to adjust to how we live life and celebrate milestones with a child in these circumstances. There are adjustments to be made. We can’t fight them or ignore them, so it’s before us to accept and embrace them.

So along with celebrating Trish’s birthday, we tried to make room for other “normal” activity. Saturday morning, Wilson, Max and I went out on Ellwood Mesa for a bike ride. Good for the soul to not only move around, but to do it on such a perfect day. As I see some of the weather reports in other parts of the country, I hate to rub it in, but if riding around your neighborhood on a February morning brings you to views like this you can’t help but get a bit giddy.

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Of course, Wilson and Max are not content to let you think that we simply had an idyllic pedal along the coast. They would have you know that the angle I snapped these pictures from doesn’t clearly depict the huge air they got off these jumps. Rudy should be advised–as much as we’re eager to get him out of the hospital, his big brothers are constantly flirting with ways to get admitted to one!

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wilsonbmx After a good morning’s play, Max and I headed down to UCLA to see Rudy. All has been quiet and relatively uneventful in Room 5453 and we like it that way. The team started feeds to Rudy’s tummy on Saturday and he’s tolerated it well. After an initial run of Pedialyte, they switched over to Mommy’s milk and are stepping things up slowly, he’s currently at 8ml/hr and if that continues to go well they’ll bump him to 10 by the end of the day. So far his stomach hasn’t swollen and from the looks of his diaper those systems seem to be in working order. Please pray for this over the next couple of days–it’s very encouraging progress, but we’ve gotten about this far before only to have the course reverse itself. Hopefully, getting some significant nutrition going will allow us to make progress on other fronts.

Speaking of those other fronts, he’s been breathing very comfortably on his trach collar sprints. He did sprints of one hour on Friday, two hours yesterday, and today he’s going for four. He’s already been making it very clear that he doesn’t like it when they put him back on the vent in between sprints, but we’re for taking things slowly. Last time we let him have his way, he got tuckered out after a few days.

Max has been good company here with Rudy, although his effect on the room can sometimes be what you imagine would happen if Shemp mated with a tornado. He’s enjoyed being in the room with his brother, breaks in the playroom and excursions to the vending machine.

Nothing like bonding with your big brother!

Of course, Max’s ability to charm and hob-nob extends beyond his little brother. On our dinner break last night, he got acquainted with Mayor of Los Angeles, Antonio Villaraigosa. Way to schmooze Max–we didn’t have the heart to tell him we can’t vote in LA (****please note–Rudy’s Beat is a non-partisan venue and the inclusion of any individual does not constitute an endorsement. You need to do more than mingle with people lining up for 35 cent cookies to get the nod from Rudy.)

A Birthday Makeover!!!!

While it’s not the celebration we envisioned (but then neither have most holidays of late), our family sure is excited about Trish’s birthday. As Trish does a pretty good job keeping vanity at bay, she didn’t let on that one of the highlights this week was a birthday makeover. There’s a kind organization that comes into the hospital to take portraits of kids and their mommies, so Trish got to join in the fun! The final result is stunning!

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She told me that our plans for the weekend have changed. Tonight she wants to sit on her bed, eat Pop Rocks and gaze longingly at her Karate Kid poster while listening to Sheena Easton 8 tracks. She’ll need to get some rest because she was a troublemaker and has to spend all Saturday in the school library with Emilio, Molly, Ally, Judd and Anthony so that they can achieve teenage enlightenment and discover that they, as middle class suburban white kids, are remarkably all the same (who would have guessed?)

OK, that wasn’t the picture. Here’s the one from this week’s makeover:

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About three times the years, but ten times the HOT! My birthday princess is looking fine!

While I’m posting and boasting, Wilson had a great week as well representing La Patera Elementary at the County Spelling Bee. His goal was to make it past the first round as he missed the cut last year, and he was successful. About 150 started and he finished somewhere among the final 20. As we didn’t have a lot of time to study, our strategy included preparation in some of the terms that have become part of our family vernacular but would likely elude the common elementary speller. Unfortunately the gambit failed as “hypoplastic”, “cardiothoracic”, “pleurodesis”, and “fundoplication” were not on the word list. Too bad, Wilson was going to nail those!

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No Surgery today

Yesterday evening, as the ICU and surgery teams were working out their schedules, they ended up taking Rudy off the list as they had to prioritize other cases. They would work to add him in if there were any cancellations, but I found it tough to hope and pray for that as surgeries like this don’t usually get cancelled because the patients heal themselves. As crazy as we are about our own little patient, we need to keep in view that this is a hospital full of sick kids and the team has to make choices. A member of the surgery team just came in about an hour ago to tell me personally that it wasn’t going to be today. So, right now Rudy is the second case on Wednesday.

As the team rounded today, Dr. Rick decided to do something about the vent as Rudy got put back on late last week so that he’d be fit for surgery Friday and then continued on in case it would happen today. So, we’ve been dialing things around a bit to give him some exercise. After five days on support, taking him off cold turkey was a bit too much, so now we have him on pressure support only and he’s been sitting on my lap for about four hours peacefully napping or studying his surroundings.

Trish is on the way down so we can switch up this afternoon.

Waiting for what Monday will bring

Again a pretty calm day here with very little to report. Livy and I enjoyed our weekend together and we were especially encouraged by a number of visitors. Rudy has been very calm today and his numbers look good. While he had a little fussy spell this morning (what baby doesn’t), he’s settled down for the rest of it so we haven’t messed with him much. At some point this afternoon, we must have shifted his position a bit because the nurses and I have now gotten a taste for the recurring vent alarm that made Trish contemplate making an adjustment to the machine with a shotgun.

Livy and I had a fun time hanging out with Rudy. She took a break from playing with nurses to play in the hospital playroom and we enjoyed two meals at her favorite place (Socko’s Subs). While we were planning on driving back together about now, as the plan for Monday isn’t clear, I’m staying around for at least the evening (if not the night). So, our friends Bob and Janet were kind enough to take along a weepy passenger on their way back to SB from Oceanside.

As it stands now, Rudy is on the surgery schedule for 10am tomorrow (Monday). No infection has presented itself so right now there’s nothing in his condition that is changing plans. Perhaps one of the other cases they mentioned to us will still show up to bump us from the schedule, but as far as Dr. Lee could determine, he’s on the schedule so until we hear different that’s the plan. If surgery’s on, I’ll stick around and we’ll be keeping you posted in any case.

Saturday Update

Not much to report today (I guess that’s a good thing), but I’ll give a quick status.

We had a fun evening together with the older kids enjoying some fine entertainment at the La Patera Elementary School Talent Show. Fun to see and be seen! This morning, Livy and I made the trip down to relieve Oma at Rudy’s bedside. Livy had raised a protest over the fact that she hasn’t had the opportunity to come down to see Rudy and spend the night, so this is her chance. She’s spending as much time in the room as outside of it as there’s now a new group of nurses to charm here on the PICU side in addition to keeping up with her CTICU friends on the other side.

Rudy has had some struggles today. The fussiness and the occasional fever spike have come to mark the onset of an infection, so that’s being monitored carefully and we’ll wait to see what the cultures bring back. He did calm down by mid-afternoon and has had a few hours of comfortable rest.

We’ve been in contact with the GI surgical team and they are trying to arrange the surgical calendar. While everyone would like to get Rudy on the calendar for Monday, there are some emergency cases that might take precedence. Of course, if an infection is discovered that might make the choice for us. So, another thing to wait on. We’ll let you know when we hear something.