Steady as she goes…

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.

Quick follow-up: Halfway there on the kidneys

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…

Two Tubes Removed!!!!!

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!

In the Midst of all the Craziness…

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!

I (heart) Troy!!!! Rolf can dream about Barbie all he wants!!!

‘Just another crazy day in LA – LA Land.

Good signs as I watch the tube…

Just a quick update…slowly but surely Rudy is making progress since my last post. I sent a text out to about two dozen people and asked them to pray for Rudy to start peeing and then started to pray myself. About ten minutes later there was a clear answer in that tube! Still not out of the woods, but an encouraging sign. He also had a pretty significant stool which is also a positive sign as it removes the concern that blood isn’t circulating properly in the abdomen. For now, Dr. Abel will be satisfied with 3ml of urine every hour and for the last two he’s surpassed that. Please pray that he keeps it up. Not only for Rudy’s health, but so that I can direct my focus somewhere else. Nurse Carol is getting concerned about my fixation…

More urgency…

What we hoped would be a peaceful Saturday after a week of too many loops doesn’t seem to be turning out that way. The nephrology team was just here and they recommended starting Rudy on dialysis. They looked at the progression of drugs and procedures we’ve had this week and see several shots to the kidneys. Dr. Rick gave it consideration but decided to hold off. It’s another one of those debates we see here among the team when it comes to caring for Rudy. Starting dialysis now would keep toxin levels from becoming dangerously high. They’re trending up, but not there yet. But the downside would be that dialysis might take pressure off the kidneys to start functioning and shut them down longer. Emotionally, putting Rudy on dialysis just feels like a big step backward–another means of support being brought in for another one of the key systems of his body. For now, the team will be taking frequent labs to watch levels closely in the event they reach a place where there’s no other option but to start dialysis.

In the midst of this, Rudy looks very comfortable and calmly opened his eyes for about 20 minutes while I stroked his head and prayed for him. The irony of this twist is that both chest tubes are putting out very little of anything. While we’re not declaring victory over chylothorax yet, things look good–except that we seem to be exchanging one crisis for another. So, Rudy, I’m not joking anymore…please!!!

Now it’s the kidneys…

I stayed with Rudy late into the night last night as there was concern about his kidneys kicking back in. About 12:30am it seemed like one of the meds was helping him as he started to pee, so I went to a friend’s home to bed. Unfortunately, he didn’t keep this up and when I arrived this morning during rounds the team was confounded and concerned that there’s been virtually no output to speak of. What confounds them is the fact that all of the other numbers that typically impact kidney function (blood pressure, labs counts, etc) are right where they should be. An ultrasound shows good blood, but for some reason they aren’t kicking in. What concerns them is that Rudy’s belly is getting quite large as none of the fluids they are putting into him have any means of coming off. We are waiting for Nephrology to come and take a look as kidneys are their specialty.

I told Rudy that if he’s being ornery, he needs to stop. When Wilson was potty training he got upset at us and decided to take things out by not going to the bathroom for days, so exceptional bladder control runs in our family and it’s been used in protest. I raised this during rounds and added that I’m getting a sense that Rudy might not like the doctors very much and not peeing is his way of showing it. Dr. Rick did not argue with this and said, “He doesn’t need to like us. He just needs to pee.”

A little levity keeps us positive, but we are concerned. Please pray.

“Little Rocky”

Rudy made it back to the room at about 7:30. He’s resting comfortably now, but looks like he went about twelve rounds–but even winning boxers come away with some pretty tough lumps. Beyond the pain from pleurodesis and the dinged feet from the lymphangiogram, he now has a big bruise on his left side from the chest tube insertion and another on his right arm from where the team tried to deal with the pic line. We’ve also noticed (see picture below) that he’s losing some hair, perhaps just baby hair coming off, but if anyone’s entitled to stress-related hair loss, I think Rudy qualifies. He came back kind of chilly, so we’ve got him bundled up with a hat and socks (I chose Spiderman for our superhero) and Nurse Susan just wheeled in a heat lamp and got him tucked under one of the many gift blankets he’s received. Been quite a week for the little guy.

In our quest to keep the positive in view there is encouragement–beyond simply being glad there aren’t any procedures for Rudy in the upcoming days. The right side of his chest is draining very little fluid–at this point we can’t say we’re in the clear, but much better to have it this way than seeing lots of fluid. Dr. Dan had a chance to check on the pleurodesis while he was in the cath lab and he thought things looked really good. They did see some fluid on the left side, so Dr. Dan put in a chest tube, but it’s a very tiny one. He only found 10cc of fluid and it appeared to have a lot more blood than chyle, so we’re hoping it’s just from yesterday’s procedure and not more chylothorax. The lab will tell us definitively what the mix of fluid is and we’ll also watch closely to see how much drainage there is. Throughout the procedure and now back at the room, his numbers look really good. Dr. Dan continues to be optimistic as he sees Rudy fighting–he responds to trauma with an increased heart rate; he gets upset about things so that the team needs to take measures to calm him down. He gets concerned when babies go through procedures and ups and downs that are part of an ICU stay and seem rather lethargic and unresponsive. Good to have an expert confirmation of what we’re learning about our son’s character. He’s a fighter–go, Rocky, go!

A Twist to End the Week

While the trip to the cath lab was supposed to be a relatively straightforward procedure late on a Friday afternoon, it’s gotten a bit more involved. The line they were investigating in his right arm apparently had come out of the vein somewhere down the line and needed to be removed. The team tried to start another one but immediately saw Rudy bruise up and decided that it was unwise to keep trying there, so they’re starting a groin line. As they were doing imaging on that side of the body, they also noticed a significant effusion on the left side of his chest (the pleurodesis was on the right), so they’re going to insert a drain there too. Dr. Brian said he saw some fluid there when he did the pleurodesis and wouldn’t be suprised that some would collect there in the wake of such a procedure, so please pray that’s all it is and that it will clear up quickly with the drain.

I’ll post something when Rudy gets back in the room. Those loops just seem to keep coming.

A whirlwind of a day…

Our Fridays tend to be frenzied days on this journey. I had a good week in SB and actually felt an ability to focus on some work stuff even while being very concerned about all that’s been going on at UCLA–quite a few nights I hit a second wind and was able to work from 9pm until after midnight. It’s good to feel a bit more on top things.

Today has had it’s high points: a fantastic breakfast with great company (thanks, Will), a drive down the coast next to a Pacific smooth as glass (just screaming to be paddled), getting to see my wife and have lunch with her, getting to see my baby boy and rest my forehead on top of his, a sweet attempt by Nurses Sara, Heather and Dr. Andy to surprise us with a Christmas gift (I’ll let Trish tell that story), and….a visit from a surprise guest (check back for pics soon–he’s HUGE!). It’s also had it’s lows: having to say goodbye to the kids, not being able to kayak out into that ocean, getting such a short time with my wife, and seeing my baby boy in a significant amount of pain.

As Trish mentioned, pleurodesis is a very painful procedure. As the object is to fuse the pleura (lung lining) to the chest wall by creating scar tissue, it means using surgical instruments to rough up the sides of the chest cavity and then putting substances there to create even more inflammation. Must feel kind of like getting scraped with sandpaper and then rubbing alcohol into it. That searing pain means it’s working. So, Rudy has been uncomfortable and his heart rate was very high most of the night (180 to 210 bpm). By the time I got here today he was much more relaxed thanks to medication (140 to 160 bpm). Too early to say if it’s working, but I was glad to see very little coming out of his chest tube.

Nurse Anita tried to put in a pic line yesterday and it’s got a kink of some sort in it. The team hasn’t been very happy with the way the lines have looked on that side the whole time, so Rudy’s just been taken down to the cath lab by Dr. Dan for an angiograph so they will have a better idea of where those veins are going. So, I’m sitting here in his room alone since Trish just left. It’s weird to be in here without him–the room is remarkably big when his rig isn’t parked in the middle of it. I’m looking forward to him getting back and just having some quiet hours back sitting with him. Our prayer is that he would have a calm night and a weekend of rest. Even though he’s usually lying in the same crib, transports and the procedures that require them are tiring on him. So once we have him settled in we’ll try for as much calm over the next few days as we can.

That’s it for now, but keep checking back as I know you’re dying to see who the mystery guest today was! (HUGE–I mean it! So great to live in Hollywood.)