Rudy Misses Me!

Rolf and I made it safely to Palo Alto yesterday and met up with Oma, Opa and Uncle Alex. As much as I hate to be away from the kids, it was great to have uninterrupted time with Rolf in the car ride up…it’s amazing how many random life details we had to catch up on. The special intimate getaway continues as we share a hotel room with my brother-in-law. Ha Ha Nonetheless, it’s right to be here and we are headed out the door for Rixie’s service soon.

We’ve checked on Rudy’s status by phone a few times each day…Nurse Kelly said she missed me yesterday as Rudy was fussy all day long. I guess once he got a taste of human contact, he’s not satisfied left on his own anymore. A string of sweet nurses came in to take turns holding him yesterday and I have a couple of friends headed over today to take a shift at, hopefully, calming him down (thanks Pammy and Robin). All in all, Rudy is doing okay. No new news to report. He did make it safely to radiology and back yesterday for the insertion of a NJ tube…there is question whether or not the tube made it all the way down to his intestines so futher xrays/ultrasounds will help to determine if we’re good to start the feeds again.

The team has decided to conduct some genetic tests in regards to his lung function to rule out things that might be causing all the delays in Rudy’s recovery. Part of the process, I guess, and hopefully will provide information about conditions Rudy DOESN’T have. We’ll keep you updated. For today, though, he’s sprinting 3-hour sprints and doing well in our absence. Thank you, dear ones, for your prayers!

Out of the Mouths of Babes!

rudy 2-2-09 Seeing Rudy intubated again reminds me of the question one of Livy’s fellow Brownies asked me at our last Girl Scout troop meeting. I wear a button with Rudy’s picture each day and at our last troop meeting, one of the girls stared at my button throughout the entire meeting. As we were saying goodbye, she finally came up to me with a concerned look on her face and asked, “Why do you tape your baby’s mouth shut?”. I took a second look at my button and SHE’S RIGHT – it does look like his mouth is taped shut!!! Oh my goodness, I’m so glad she asked for an explanation before going home to tell her family that troop leader Trish abuses her baby!

I arrived back at UCLA late yesterday afternoon and quickly scooped Rudy up for a good hold before he had to have his next respiratory treatment. Eventhough he was intubated again, I was relieved to see him relaxed and breathing comfortably in my arms. He had a day of rest yesterday but started sprints again today (see video below). There’s really no telling how long he’ll be on the ventilator this time but he cruised through his first two-hour sprint and today’s chest xray looks good so we’re headed in the right direction. There is question about the fever he has had for the past couple of days…tests have been conducted and there isn’t any sign of new infection so we’re not sure what’s causing the fever…a bit problematic for Rudy as the fevers seem to get him agitated which then effects his breathing. The Infectious Disease people are being called back in to consult so we’ll see.

Rudy is scheduled to take a little trip to Interventional Radiology tomorrow for the insertion of an NJ tube through his nose to his intestines. The hope is to start feeding him again through this tube but no specific timeline has been established. All in all, I feel Rudy is in a stable place…having to put him back on the vent was a discouragement, naturally, but all part of the “big picture” process and we simply need to regroup and readjust expectations once again.

This is a big week…Rolf and I are heading up to the Bay Area tomorrow for dear Rixie’s memorial service. Neither of us will be with Rudy for 4 days…the longest we’ve gone ever. Although Rudy and the other kids in Santa Barbara will be in great hands, it is unsettling to leave everyone behind. Please pray that Rudy will thrive and that Wilson, Max & Olivia will have a blast in our absence. Rolf is officiating the service and I’ll be singing so please pray for focus and composure as we turn our attention toward a very special life to celebrated.

Rudy’s wild hair is starting to curl…maybe he’ll have ringlets like his oldest brother Wilson! It’s fun to see noticable changes like that that prove he is growing…more and more undeniably ours. Strangely comforting while in the midst of a process that leaves me feeling disconnected from Rudy at times.

Rudy’s World Wide Web of Love

Re-intubating Rudy yesterday made for an immediately noticeable change. His lungs inflated more, his color changed and his oxygen sats went up to where they needed to be. While he always seemed a bit rigid to me on the vent previously, this morning he was moving around and taking an interest in toys as I held them up over his head. He spiked a fever today, so we’re on infection watch (nothing new). His kidney function seems to be coming back nicely—we’ve come to see that his kidneys are very resilient and bounce back if the team catches it quickly. He’s been receiving IPV treatments every 3 hours where a percussive machine puffs air into his lungs rapidly to expand them and loosen up secretions. We’ll keep on this course of action for the next few days and see how it looks to give Rudy another chance off the ventilator when all the conditions align.

I stayed with Rudy through early afternoon and then hustled home to switch places with Trish and enjoy the Springsteen Bowl with my boys. Great game to boot. Not much of a gambler, but I took Bruce on the over and made a killing.

This is a harrowing journey with more turns and reverses than one would want; but not without touches of grace and fun reminders of God’s hand. Amidst the breaks in progress for Rudy, we were tickled three times by three unique discoveries this weekend from among the Rudy’s Beat family:

Saturday I was chatting with Nurse Denise and we made a connection that we both once lived in Tujunga. As we shared our memories of the community, things understandably turned to where in town we lived and our descriptions of nearby streets and landmarks kept having more and more in common until we determined that we lived in the SAME HOUSE!!. She rented it in 1976 and we bought it almost 30 years later! Too funny!

I don’t think they make four-year olds cuter than Kelly and I’m so glad her parents, Mark and Mary, came from the room two doors down to introduce themselves as they were being discharged after a short stay. It’s always nice to connect with more members of the ICU Parent Tribe who know what it’s like to have your newborn in the ICU for several months. Even better when it’s a story told in past tense and you can look down and see a happy girl riding in a wagon down the hallway. As Kelly needed a follow-up operation on her heart, Mark and Mary set out to do some research on Brian Reemtsen, came across the Beat, and have been part of Rudy’s following. So glad they are on their way and their experience with the team here was consistent with ours. Thanks for stopping by, friends.

Speaking of the parent tribe, avid readers might have noticed in the comments that one of the Rudy’s Beat family spotted our friend Alan Manning in the Minneapolis airport. Sorry if it was alarming, Alan; within any following there comes the occasional stalker. Allison, remember what the nice people in the white coats told you about giving people their space. Just because Chandler and Monica are “on Friends”, doesn’t mean they are “your friends.” Think of the internet the same way. Keep your distance and stay in state—we don’t want another one of those ankle bracelets, do we? Alan, I don’t think you’re in any danger, but count your socks—she has this thing about sneaking in and taking them.

While it’s clear none of these connections would have been made without the presenting issue, I hope everyone forgives me if I don’t say that they make the ordeal worth it. Rudy’s stricken with something awful and I wish it wasn’t so, but I am grateful that within the struggle there are uncanny connections that make us laugh; reminding us that we are not left to navigate this alone but in a community we never expected. Thanks for being a part of it.

The Vent Blows.

The ventilator totally blows–literally and figuratively. There have been some bumps over the last couple of days some of which led to Rudy getting put back on the vent late this afternoon. This morning began with a likely unrelated concern over his kidneys as some of the blood pressure and antibiotic meds impeded their function. Late yesterday, the team started him on Lasix and his renal function has steadily been returning. We’ve learned his kidneys are hearty and resilient and they’re proving to live up to their reputation once again.

The team has naturally been watching his breathing very closely and grew increasingly concerned with the way his right lung looked on Xray. They did an ultrasound which ruled out a return of the dreaded chylothorax, but that made it clear that there was an accumulation of mucus in his right lung. Over several hours, they noticed he wasn’t able to cough much (which would clear the lungs) and appeared only able to derive benefit from one lung (which caused his oxygen saturation to fall lower than acceptable.) While we could have waited things out longer, Dr. Robert felt it best to address the situation now rather than face a distress scenario later on.

Putting Rudy back on the vent allows the team to expand the lungs fully and effectively suction out the lung. His time back on the vent could be relatively brief (we’ve come to expect this to mean a few days) so please pray to that end—that Rudy would have a good rest and that the treatments would help the lungs expand and function properly. It’s tough to see Rudy have to be re-intubated after such a long stretch off the ventilator, but we have gained the knowledge from this week that Rudy can breathe on his own—there are no physiological issues limiting his lung function. While here waiting for the relatively brief intubation procedure to be done, I just got a call from the unit that Dr. Robert decided to place an arterial line in Rudy so they could get accurate readings on blood pressure and saturation levels. As it’s getting to be 6:30, it looks like I’m going to have another one of those pre-occupied dinners.

So the burden of waiting patiently is still ours. I’ve wondered some about what it must be like for Rudy—to lie there patiently during the early months of life when babies are probably held more than not. Holding him at any time is great, but there’s a rigidness about him when he’s intubated that greatly diminishes the cuddling one can do. Fortunately, it took one of the necessary people for the re-intubation a while to get to the unit after they paged him, so I took the time to pick up Rudy once more and stood there holding him up against my chest for half an hour. His little hands clenched onto my shirt and I felt his breath against my chest as his lungs worked back and forth. I kissed his head and prayed that God would somehow extend the impact longer than the actual act. I want him to know that this is what it means to be with Mommy and Daddy. We’re not just two faces that come into focus more often than the others around the bedside. I want him to feel the vibration of my voice from having his head against my chest instead of just hearing my words coming through the white noise of the ventilator. It hurt to put him down, but my prayer as I did was that the feelings of being close to us this week would summon the instinct to fight his way quickly back for more.

Just to remind us all that this is temporary, here’s a couple of pictures and a video from the special moments these last few days. We’ll look forward to many more!

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Rudy Is A Superstar

Today has been a good day. Rudy has been breathing on his own for 60 hours and continues to fight his way to a comfortable breathing pattern. I’m encouraged by the fact that Rudy was less agitated today and when he did get upset, he was easily consoled. We enjoyed some snuggle time in between his RT treatments and his oxygen sats held consistently in the 60s and 70s. In general, he looks good…there are questions regarding the last couple of xrays as it appears there is fluid collecting IN his lungs but he has been getting RT treatments every three hours to break up the secretions and suction them out so hopefully this will help.

He continues to work hard at his breathing but the general feeling is it’s simply a matter of time for him to adjust. We just need to keep an eye on him that he doesn’t get over tired.

The Immunology docs came by today to follow up on their initial tests. It is clear that Rudy’s immune system is weakened. The question is whether it is temporarily weakened because of what he has been through so far or because of a genetic disorder of some kind. Their recommendation is to do futher tests to find out. My prayer tonight is that Rudy’s body will replenish the immune cells it has lost over the past 17 weeks and that his low functioning immune system is a temporary issue and will “kick into action” much like the other systems in his body that have needed time to strengthen. Talking with them opened up my mind to a whole other set of issues that, frankly, can overwhelm me and I’m reminded that this may feel “too big” for me but nothing is “too big” for God. Just as we must take this one day at a time…we also need to digest this one detail and one health concern at a time. Thank you for continuing to join us in praying over all the details.

The Jury Is Still Out…But So Is The Tube! Happy 17-week Birthday…

All I can say is “Phew”…today has been a physically and emotionally draining day but good just the same. At the time of my last post, Rudy was working hard to breathe on his own and Nurse Young and I spent a good bit of the day trying every trick in the book to get Rudy to calm down. Various doctors were in and out checking Rudy, his numbers and his lab results multiple times. The curious thing is that the test results and Rudy’s appearance didn’t match the numbers on the monitor…based on those, Rudy should have been purple! Instead, he was pink and beautiful. The big concerns were, as I mentioned earlier, his oxygen sats and the fact he was breathing so hard. The sats were all over the map dipping down into the low 40’s at times which isn’t good and not going higher than the low-60s which isn’t ideal. He did get a blood transfusion mid-afternoon and that seemed to help. When I left for dinner, his sats were resting comfortably in the low-70s – better!! We’re not out of the woods as Rudy’s little nose continues to flare and his tummy continues to retract with every breath but the RT did remove the ventilator from our room today which felt victorious. After a certain amount of time, the ventilator is deemed “contaminated” and they have to remove it…if Rudy needs to be intubated again, he’ll get a fresh unit. Rudy and I bellowed a hearty “goodbye” as if it’s gone for good nonetheless.

Rudy did need to get another OG tube put in through his mouth to his stomach today so he can get medications to his stomach and also to vent some of the air that he can’t get out. He is tolerating it well probably because he’s used to having a tube down his throat! Another tube means more tape on his face but you can still see his sweet lips!!!

We finally found a comfortable position for Rudy…draped over a pillow on his tummy! It looks pretty funny but it works!

So, we both end the day more relaxed than when we started it this morning.

Happy 17-weeks Rudy and Congratulations on making it to 36 hours off the vent!

The Celebrations Continue…

Nurse Betty was so excited to see Rudy extubated that she ran out to Ralphs and got some more sparkling cider for a repeat toast during the morning shift change! If nothing else, this boy is loved!

Rudy had a decent night but I think the jury is still out this morning. Rudy is working a little harder and his morning xray looks “muddy” on the right side. Although no one is running to get the vent, quiet, careful attention is being paid to Rudy. He’s getting a RT treatment right now and they may need to get another xray so I’ll keep you posted as the day progresses. Please pray that his oxygen sats will stabilize and remain high, that his breathing will calm and his tummy will stop retracting so hard.

My shower is “out of order” today so I’m on the hunt for another shower on a different floor…the picture of me wandering around in my flannel pajamas, with my pink tub of toiletries is one I’m glad isn’t captured on “Rudy’s Beat”!

12 Hours and Counting…

We have surpassed twelve hours and although Rudy is struggling a bit right now he has been doing great all afternoon and evening. What a day today has been!! I’m excited but guarded…the first 24-48 hours will be the true test for Rudy but Dr. Rick was very optimistic when he checked on him this afternoon. The sparkling cider glasses were raised in celebration during afternoon rounds and then again at the nurses’ shift change this evening. Rudy has had a steady stream of well wishers come to see him all day…word spreads quick around here and, as always, it’s heartwarming to see the show of support among the staff!

Celebration with the Docs during rounds!

The celebration continues at shift change...

There wasn’t any talk today of the next steps…all focus is on keeping Rudy off the ventilator. Please continue to pray to that end. It has been said before but I’ll say it again…Rudy is such a fighter and, boy, we sure will have our hands full when Rudy is finally able to come home! Bring it on, little man!!

1-27-2009 Extubation Day!!

Standby

We are now at 6 hours!!! I’ll report more details later but I thought you might enjoy our day in pictures and video! Rudy is doing well, awake and comfortable…

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4 Hours and Counting…

It’s 2:20pm and Rudy continues to breathe on his own. I held him for about 90 minutes and he calmed down and dosed for a few minutes. He’s now back in his favorite bouncy chair and is calm…looking around and getting used to no longer breathing through a straw!!! His numbers look good right now…heart rate is down and oxygen sats are okay but could be higher. He doesn’t look as blue as he was earlier…so far, so good. We’re all fixated on the monitor…maddening!

Drs. Robert, (Papa) Andy, Brian, Dan, Mary, Sonal, Lee, Ryan and, of course, Rick have all been in to check on our little fighter…if he’s still off the vent at afternoon rounds, the sparkling cider shall be opened and poured in celebration!!! Thank you, thank you – please keep praying!