Super-size Stitches

He has some cool Frankenstien-size stitches now...

The surgical team came by early this morning to remove Rudy’s dressing for the first time since his early morning trip to the OR on Tuesday. The wound looks much better and there isn’t any sign of fluid leaking from it which is good. It’s just now he has these long stitches reinforced with rubber catheter tubing that make for a great conversation piece when folks drop by for a visit. CT Nurse Sara stopped in this morning and was quite impressed with his extra-long zipper extending from the top of his chest to down below his belly. As we were counting the number of scars his has on various parts of his body, I envisioned Rolf and I getting a call from Principal Santiago at the elementary school informing us that she had to call Rudy into her office to explain that it just isn’t appropriate to show off his scars to the kids on the playground…no matter how impressive they may be!

Rudy had a hard night last night as his numbers went all over the map…high heart rate (200+ even when he was asleep) and low sats which he hasn’t experienced for a few weeks! It was unsettling to me but he settled down today with higher doses of methadone. We’ll have to wean him off the meds again but, at this point, it’s best to let him rest comfortably. The pediatric team rounded this morning and the cardiac team rounded this afternoon…no specific plan-of-action has been proposed but everyone is in agreement that his wound needs to heal and that we need to see the fluid stop before we can move forward. The fluid output increased a little bit today compared to yesterday’s totals but that isn’t of great concern to the team.

It does seem to me that it’s taking Rudy longer to bounce back after this last surgical procedure…it has been a long week of waiting for him to stabilize and “wake up” but I have to keep reminding myself that, in general, he looks stronger than he did a month ago so he has made progress! Baby steps…baby steps…one day at a time!!!

Happy 22-Week Birthday!

This is what Rudy did all day at 22 weeks!

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

Rudy’s finally resting…

‘Just a quick nighty-night from PICU Rm. 5453 as Rudy is finally asleep which is my cue to go grab a bite to eat and head to bed myself. Rudy struggled to find a comfortable rhythm all day. He was fitful and in constant motion…since the goal was to keep Rudy calm, he got some heavy doses of pain meds that didn’t seem to help for the longest time and then, finally, he crashed late this afternoon in time to head down to radiology for the upper GI test that Dr. Shew requested. The preliminary results show that the intestines are working properly and the chylous fluid is not coming from a leak in the bowels/intestines. This is helpful information but doesn’t tell us where it is coming from so we’ll continue with the plan to allow Rudy’s stomach wound to heal, watch the fluid output and pray it stops soon. The special stitches Dr. Shew used to close Rudy’s incision need to stay in approximately 4 weeks… these stitches and the drainage tube would not be things that would keep Rudy in the hospital normally but because there are a few other things going on, our hope for a homecoming in possibly 3 weeks seems a long shot at this point. We just have to wait and see. Rudy remained on the vent all day with no sprints on the trach collar because he was so fussy…so maybe after a good night’s rest, we can start back on a course for weaning. Speaking of “good night’s rest”, I’m ready for one. Goodnight everyone…thank you for the calls, emails and blog comments. I may be a little weepy tonight but I feel like we are surrounded and uplifted and that is of great comfort. Blessings…

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.

He’s Back…

…safe and sound. Rudy’s body is very active with his feet kicking and his arms in constant motion, but he is still knocked out from the anesthesia so he must be dreaming about an amazing adventure. 🙂 I’ll know more about a game plan after morning rounds but for now the plan is to lay low today and keep Rudy as comfortable as possible. Dr. Shew said the skin around Rudy’s incision is not in good shape…pretty saturated and understandably weak so keeping him still and giving the area time to heal is crucial at this point. I did get to hold him for a couple of hours late last night for which I’m thankful as holding him may need to be put off for a couple of days. I’ll sign off for now but will be back shortly…

Rudy’s Timeline

Rudy sure does set his own pace…from day one. It’s a little after 5am Tuesday morning and we just got back from taking Rudy to the OR. Overnight the hole in his stomach incision got noticeably bigger and the surgical team was concerned that other things besides the chylous fluid (like his intestines) might start to push out so they ordered him down to the OR. The plan was set around 2am but because of another late night case, the call for Rudy didn’t come until about 4:45am. Dr. Shew will be conducting the procedure. He is going to close the incision up tight as well as put a drainage tube into his stomach much like the chest tubes he had to drain the chylothroax. Normally, drainage tubes aren’t used for this kind of chylous because, unlike with the chest cavity, the fluid isn’t isolated in one area and therefore the drainage tubes aren’t very effective. In Rudy’s case, however, Dr. Shew and his team feel it’s important to get as much pressure off the incision as possible so eventhough the drainage tube won’t drain all the fluid around the stomach, any release of pressure caused by the fluid build-up is helpful at this point. The presence of the drainage tube may even encourage a more continual flow of the fluid but, again, the priority right now is to give the stomach every opportunity to heal…then, we’ll tackle the fluid issue itself. Dr. Shew came up to the room to talk with me personally before we took Rudy down to the OR…he is quite familiar with Rudy as he oversaw the TPN study Rudy participated in back in October so Rudy is in good hands. The procedure should take about an hour and a half. I’ll let you know when he is back. Thank you for your prayers!

“Serenity Now”

One of my favorite Seinfeld moments is Kramer reciting his mantra “serenity now” over and over with increasing frustration. You know you watch too much t.v. when you find yourself adopting coping mechanisms from a crazy sit-com character. There were a few times today when I caught myself whispering “serenity now…serenity now” as I struggled to understand the latest twist in Rudy’s journey…

I spent the morning at home finishing up a few house chores, grabbed a quick bite with Rolf on my way out of town (it was “Big Mac” Monday after all) and arrived in L.A. about 1pm. I hadn’t even set my bags down before I heard the news…fluid was seeping out of Rudy’s stomach incision. The pediatric surgical team came up right away to check it, Dr. Shew took one look at it and said he suspected it was chylous ascites…lymphatic fluid that was collecting in the cavity outside the stomach!!! Yep, for all you avid Rudy’s Beat readers, this is the same fluid that we battled for so long in his chest cavity called chylothorax. They sent a sample right away to be tested and we got word around 7pm that it is, indeed, chylous! The wretched monster is back!!!!

Rolf and I have many questions…we and Rudy’s team were so hopeful this was behind us! It still isn’t clear to me how this will effect the big picture scenario but, for now, they have stopped Rudy’s feeds in hopes of getting the fluid to stop leaking from the incision. The number one priority right now is to give the incision time to heal. If the fluid doesn’t stop soon, Rudy will have to go back to the OR to have the incision closed surgically. The chylous needs to stop completely before they’ll attempt to feed him again. Unlike the chylothorax fluid, chylous ascites cannot be “fixed” with any surgical procedure. From what I understand, it is (ONCE AGAIN) a matter of time.

This is a huge blow…we prepared ourselves for a slow back-and-forth on the feeds as Rudy’s digestive system adjusted AND a fluctuation of the ventilator settings but none of us wanted to suspect that lymphatic fluid would come into play again. This is particularly troublesome to me because Rudy battled the chylothorax for 8+ weeks!!!! Are we looking at a similar timeline with the chylous ascites? The test results came late in the day so we’ll have to sleep with our questions in mind until I have a chance to talk with the doctors involved tomorrow. “SERENITY NOW!!!”…Can I go up to the helipad and scream it from the very depths of my being????

I actually got a very timely birthday gift from Nurse Kristina last week…a little gift book from the hospital gift shop entitled “Serenity”. I read it cover to cover on Friday and a quote from the book stuck with me all weekend. The book was compiled by Sarah M. Hupp and in it she writes, “Serenity is found in the deliberate adjustment of our lives to the will of God”. So true!! Over and over we’ve had to stop, regroup, readjust our expectations and move forward ONE DAY AT A TIME. “Deliberate adjustment”, I have learned, is key to finding peace and acceptance in the midst of hardship. The events of today are asking us to take that truth to yet another level. Thank goodness God’s mercies are new every morning!

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.

maxwillbikes

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!

maxbmx

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 Day to be Grateful!

Wow! I can’t even begin to express how grateful I am for all the love and best wishes sent my way today. I’m totally overwhelmed by the number of phone messages, texts, emails, Facebook messages, blog comments, cards and gifts from friends and family near and far not to mention all the wonderful face-to-face well wishes from the staff at the hospital! I may not be able to return everyone’s greetings but you must know that I received them all and deeply appreciate every one!!! Thank you…thank you! I’m so grateful

There were a number of things that made today special…it started out with Rudy and is ending with the others all cozy on the couch. In the midst of all the activity I was honored to visit our old neighbor in the CTICU. Rolf and I were touched daily by this precious little girl who fought so hard in the room next to Rudy’s for the past 7 weeks. We saw the dedication of a loving foster family and the CTICU staff that filled her life with love and tenderness. Her precious life on earth ended today and as I walked back to Rudy’s room after saying “goodbye”, I felt so honored to have witnessed this little life…she deeply touched the lives that came in contact with her – I’m so glad I was one of them. I spent the rest of the morning holding Rudy – tight – we looked at each other for a bit until he feel fast asleep. I was so grateful

OT Nichole came for a little therapy and Nurses Barbara and Missi prepared him for some exercises off the vent completely! The weaning began early this afternoon with an hour-long stint with the trach collar and he tolerated it well…another one hour stint was scheduled for this evening and so on!!! He’s doing great. Rolf and Max will head down to L.A. tomorrow in time for the first attempt at feeds through the g-tube! Of course, we’re very anxious to see how it goes.

For now, though, our focus is on Wilson, Max and Olivia as we enjoy a rare movie night together as a family. Freaky Friday is tonight’s movie choice…come to think of it, today was a bit “freaky” but, on many levels, a true gift of grace and love!

a day I was so happy to share with Rudy...

P.S. Thanks for the gift of a good laugh today Rolf! Speaking of the 80s, don’t be surprised if the classic college video production of “Rolf: Man, Myth or Mongoloid” gets mysteriously distributed worldwide!!!!

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!

trish80s

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:

trishmakeover

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!

wilsonspellingbee