Well, unfortunately the CAT scan revealed some pockets of fluid on Rudy’s lungs. On the right side, they’re very small and may be post-operative secretions which couldn’t be handled by a chest drain. If they need to be removed it would be with some very focused procedures. On the left side, there was a significant pocket of fluid which Drs. Robert and Brian decided to drain. Clearly not a step in our preferred direction, but thinking positively, previous fluids were seen to accumulate rapidly on Rudy’s chest Xrays and noticeably impaired his breathing. That wasn’t the case with this pocket which yielded only 70ccs of fluid on insertion. Robert and Ryan have sent a sample to the lab for testing, but it didn’t readily appear to be chylous. Please pray that it’s not…just some post-operative seepage from the tissue following the pleurodesis. So a drain is in, which means we’ll be joined by the generic fishing bears again (remember them?).
As several have said how much they appreciate having specific items to pray for, please pray for the fluid in Rudy’s lungs to resolve without needing pleurodesis on the left side. Also, pray that he would continue to make progress on the ventilator. Dr. Robert is very pleased on a number of other fronts I mentioned in my earlier post today, so we’re very grateful and are praying that God would continue to let us see progress.
Dr. Robert was very kind in granting Livy’s Christmas wish to hold Rudy. He held off on inserting the chest tube for 30 minutes so that both she and Max could have a chance. Once again, one of those teary-eyed moments snuck up on us as we looked on.
The hospital is quiet, but not empty on Christmas eve. There are only 3 CTICU patients and the rest of the East PICU has been cleared out and patients consolidated on the West. Elective surgeries are scaled back during the holidays leaving only the patients who have no choice but to be here. As lonely as it sounds, we know just about everyone working today and appreciate them deeply so spending Christmas with them isn’t so bad. We arrived en masse this morning with all of the kids and commandeered use of the room next door, so we’ve got a bedroom and a den. As most holidays involve sitting around in close quarters with too many people, it’s not really much of a departure.
Rudy continues to do well, but Dr. Kelly is interested in getting a closer look at his chest as there seems to be a blockage on the right lung–perhaps something post-op from the pleurodesis. So, they will take him downstairs for a CAT scan at some point, but with the holiday staffing we don’t know exactly when that will be. When they have him there, they’ll also take a look at the left side where they still see a bit of an effusion (fluid) that they’re watching, but not acutely concerned about yet. His kidneys are functioning smoothly–producing lots of urine (the other kids think our fixation on this is gross), and all the numbers are getting to be exactly where they need to be. His nutrition is going smoothly thusfar (up to 3ccs of formula per hour) and most importantly, the prealbumin level (which is the key indicator of nutrition) is at 20–right where it needs to be. Not surprising as from the looks of it, one would suspect he’s sneaking some donuts when we’re not looking (TPN and steroids make one pretty puffy).
So this is our Christmas and, the more I think about it, it’s all very appropriate. As I’ve shared in a few settings over the past few weeks, we tend to associate Christmas with preparation and organization. We shop, plan, decorate, dress and clean up. All this to commemorate an instance that was anything but. Mary and Joseph had no time to make plans and prepare but found themselves caught in a setting that bordered on deplorable. A birth in a cold, stinking stable. A baby placed in a crib that was far from cozy, sterile or hypoallergenic. No, a manger coated with dried spittle and decaying bits of cud from the livestock that dined there. Had they even the opportunity for the slightest bit of planning it would have seen them far away from anything like this. Yet it’s into this dirty setting, populated by frazzled and unprepared people, that God comes bringing life and hope. And that’s a tremendous comfort to us here in Room 5439 because it means that Christmas will come to us, regardless of how much we’ve prepared for it. Not to say we haven’t done a bit of planning, but our primary wish was to be together as a family. With this in place, we’ll let the celebrating begin.
I called down this morning to check on Rudy and Nurse Rosella reported that the progress continues. The team has backed off on some of the diuretics, so his kidney output has lessened a bit (15-20cc per hour) but that’s still acceptable and they’d like to see what kind of progress he makes without major meds. His tube feed was turned up to 2cc but the team is watching that very closely, so prayer for that would be appreciated. The BEST news is that his chest Xray looked very clear this morning so the concern about any fluid there has lessened. After the twists and turns last week, progress like this lifts our spirits.
So, the cars are packed and we’re ready for our Christmas celebration with Rudy. We’ll stay around Santa Barbara until the afternoon as we’re having our annual Christmas feast. As I write this in my office, the building is a hive of activity as we get ready for about 300 guests–a great way to start off our Christmas.
Despite the fact that we weren’t with Rudy today, we kept abreast of what was going on at the CTICU over the phone with Dr. Robert, Dr. Abel and Nurse Victoria. Today was a day of gradual progress. The kidneys continue to function and the right numbers are going down. The team is trying to dial in the right levels of diuretics as they found they can’t back them off too far or the urine output drops. Now that the chest tubes are out, the plan is to increase nutrition so that he’ll be strong enough to make progress on his breathing.
The team started stomach feeds again, so that’s another thing to pray for–we want Rudy to be able to handle these well. They’ve also started a respiratory treatment (the name escapes me now) four times a day which pushes air into the lungs at a rapid rate to expand them. We’re hoping it will all help him when it comes time to make progress on the ventilator without lung collapses and the other setbacks that can happen.
We’re so grateful for the last couple days as last week had some really difficult times. We’d love God’s favor on Rudy so he can put a lot of these challenges behind him. For our own encouragement, it would be nice to have him sail through an obstacle or two. He tends to meander or take a path with more twists and turns. Unfortunately, this journey is rife with pitfalls so it would be a great Chirstmas present to dodge some of the ones we know are out there this week. We’d appreciate your prayers and ask that you pray with us through this time:
1. That Rudy’s chest would remain clear of fluid; there was a trace amount on the left side of his Xray today which the team will watch closely.
2. That his kidney function would continue to remain stable and improve.
3. That his stomach would process nutrition well and allow him to build strength.
4. That he would be able to make progress toward breathing on his own.
As always, we are so grateful for you journeying with us. As unique as this Christmas will be for us, one of the things that will remain in our minds is the faithful company of friends, far and near, that surround us. Thanks for being part of this. Tomorrow we’ll head down with the kids to be with Rudy until late on the 25th. In case we don’t post with as much frequency, know that we have days of family and fun planned which we’re hoping to savor. We pray you’ll be doing the same.
I’m packed up and ready to leave Rudy now. Good progress continues–he’s put out 15ccs each of the last 3 hrs so the team has re-started him on TPN (IV nutrition) since they can now increase the number of ccs going in without being concerned about what’s going out. Please continue to pray for kidney function as 30ccs is where it should be. Then they’ll be able to load on the nutrition so he can gain strength and work on breathing in earnest. It’s always hard to leave him, but much easier to do on an upswing. We’ll be phoning in regularly to get updates on his status and will post accordingly. It’s a clear day and I should be hitting the ocean just in time for a pretty winter sunset…
Though I haven’t seen Trish much since Friday, she’s still a bit giddy about the whole meeting Zac Efron thing. She won’t stop humming songs from High School Musical so I guess turnabout is fair play after my whole Barbie fling. It has gotten me a bit nostalgic about my own high school experience in North Jersey and how it parallels life at East High–a fresh-faced milieu of multiethnicity (except most of the kids at Madison High had zits and, amidst the vast Italian-American majority, diversity didn’t extend much further than our German-speaking Austrian family); the spontaneous song and dance that burst out at most every sporting event (as long as we avoided the section of the bleachers where all the kids in Ozzy T-shirts were smoking); and the expansively choreographed production numbers all of our dances became (if plots to see who could get one of the girls from St. Elizabeth’s to slow dance with you all the way to the end of Freebird count as choreography). OK. So it was nothing like my high school. Let me know when James Gandolfini is coming.
If you couldn’t tell, my spirits are up today because it’s a very good day. Rudy’s kidney function kept up and was steady overnight. The team is still watching numbers to make sure nothing gets too high, but as long as he continues to pee, there’s a significantly less concern. Some of the key numbers (potassium, phosphorus, electrolytes) are even starting to decrease so that means the kidneys are removing impurities from the body like they’re supposed to. Please keep praying but we can also be thanking God for putting us in a markedly different place than we were yesterday.
The big development today is that Anita and Carol came in to remove both chest tubes today. Although Rudy has been without chest tubes, this is the first time they’ve ever been removed as opposed to falling out. There hasn’t been any output for 24-48 hours and the chest Xrays have been looking clear so we’re optimistic that the pleurodesis was effective in putting the chylothorax behind us. We will continue with routine chest Xrays, but hopefully this front will keep quiet so that we can focus our attention on the other key parts of the battle–breathing and eating.
I’m going to stay with Rudy for a couple more hours and head home this afternoon so Trish and I can be together with Wilson, Max and Olivia for a couple days until we all come back on the 23rd to celebrate Christmas as an ENTIRE family. It’s going to be hard to leave Rudy, but perhaps a break will give him a chance to rest, heal and be ready for his brothers and sister to hold him for Christmas (remember there’s no tubes). We’ve mentioned it before, but he really looks beaten up from the week he’s had–huge bruises on his side, feet and arm, a huge incision on his right side from the pleurodesis, stitches on both feet, dressings on both sides from where the chest tubes were along with the usual collection of IV lines. But NO CHEST TUBES!!!! What a tough, tough kid!
blessings abound! As you can tell from Rolf’s frequent updates, the past couple of days have been emotionally draining and the threat of dialysis today was a real discouragement to me so, I admit, I haven’t felt like following up on Rolf’s “teaser” yesterday but I realize that it’s important for you to hear of the blessings as well as the concerns…
It’s funny how extremely focused I am when I’m at the hospital with Rudy and how very UNfocused I get when I come home. I’ve kind of been walking in circles around the house today unable to focus on any of the “to dos” and was pleasantly surprised by a friend who took the initiative to come over and take me and Olivia to lunch while the boys were at a friend’s house playing video games…this past week with Rudy was so full with so much to process and I didn’t fully realize the impact until I got home and let down a bit…time with a friend was a warmly welcomed distraction – thanks Lisa!
The good news this evening is that Rudy’s kidney function has picked up. Rolf has been reporting progress to me regularly. He’s done at least 3ccs every hour (the target set by Dr. Abel) and did twice that during the 7pm hour. Some of the lab numbers are elevated but nowhere near the danger levels. So, thanks for praying and please continue. The chest tubes have been dry and we want them to stay that way, so that’s encouraging progress. Hopefully the pee tube will continue to see lots of acti0n overnight so we can truly feel like we’re moving forward.
Yesterday was another one of those surreal days that included drama, anquish, tears of concern, tears of joy AND fun all wrapped into one! It all started when I returned from breakfast to find nurses Sara and Heather and doctor Andy S. in Rudy’s room mixing a strange concoction at Rudy’s bedside. When I greeted them with a cheerful “hello”, they all looked up with wide eyes and a collective sigh of disappointment. Dr. Andy quickly excused himself and the gals started to laugh. “What’s going on?”, I said. “Oh, you came back too soon!”, they replied. I took a closer look and realized the strange concoction was plaster! They were attempting to get Rudy’s hand and footprint for me as a surprise…come to find out later, nurse Gladys was involved in the plan as well! I mentioned to nurse Sara a few days earlier that I wished I had had the presence of mind to ask for a foot print of Rudy when he was born. She remembered and found a kit to do just that when she was out shopping. I was so touched by their thoughfulness, teared up and then quickly offered to join in and help. Unfortunately, the plaster project ended up being a bust but just as we were aborting the project, social worker Erin stopped to see what was going on. When we explained how the plaster wasn’t working to get the prints, she told us to wait just a minute and came back with some molding clay her department uses for just such a purpose! With the help of nurse Sara holding the clay and with Erin’s help unclenching Rudy’s little hand, we got the prints! The prints are precious but I think I cherish more the visual of all these sweet gals working so hard together to fulfill a mom’s random request – thanks Sara, Heather and Erin!
Shortly after things settled down from the impromtu craft project, Dr. Dan came by to let us know of a “special guest” arriving soon to greet some of the pediatric patients. I made a couple of calls to confirm and soon Rolf and I were headed down the hall with our camera in hand in hopes of getting a special gift for Olivia! No, sorry Uncle Alex and Aunt Teresa, it wasn’t Brad Pitt (although, he is the Brad Pitt of the tween generation )!!!
Rolf wasn’t lying when he said he’s HUGE!!!!
Yes, it was none other than…..
ZAC EFRON!!!! If you don’t know who that is, your kids are OLD and you obviously haven’t been out from under that rock you live under much in the last 3 years.
After the movie premiere incident, I stood there eating crow as I waited for my turn to shake Zac’s hand and ask for an autograph…for OLIVIA! He was very sweet to grant my request and even sweeter to the mesmerized kiddos. So, thanks Zac and company!