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.
Month: March 2009
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.
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!
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.
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.)
Rudy's Beat 