In between getting settled here at home, we’ve been working on a couple slideshows to document Rudy’s journey and all the people who played a part in it. But Greg, being much more tech savvy (ya think?), got his discharge day slideshow up and posted today. So grateful to have such a record of a day we’ll never forget.
Check out Greg Lawler’s slideshow here.
Thanks so much, Greg!
I’m not sure words can adequately express what the past few days have been like…as a result, Rolf and I have been putting together a couple of slideshows that we will post soon that we feel capture a bit of what our hearts are experiencing. As expected, having Rudy home has been a big adjustment but in a real positive way. He has actually slept through the night the two nights he has been at home…so we’re not as sleep deprived as one would expect!!!! He gets his last meds at 12 midnight which is when Rolf puts him on the feeding pump (the pump feeds him continually throughout the night) until 6am when we take him off the pump and give him his 6am meds. So that gives us 6 hours of solid sleep which isn’t bad! Ha Ha
I’ve spent the past two days trying to find a place for everything…what WAS a very organized changing table with neatly placed diapers and wipes has been cleared off to house all of Rudy’s medical supplies and equipment. For now Rudy has a corner of our room so until I find a good storage spot for everything our room looks more like a medical supply warehouse than a bedroom. His crib is warm and cozy, though, and he seems to like it alot.
The kids are sweet with him and visibly excited to have him home but they are sensitive to give him space and not overwhelm him. I’m not as nervous as I thought I’d be in caring for Rudy but, I admit, I’m not too eager to leave the security of our home. Rudy has his first pediatrician appt. this afternoon so that will be our first outing. I’m still trying to get a handle on his schedule…He feeds every 3 hours, he has a total of 13 meds he takes at different intervals throughout the day and we have to make sure we get his trach and g-tube cleaning/care done each day. It feels pretty non-stop at this point but I’m sure it will all become second nature and we’ll settle into a nice routine…there will be a day when drawing his meds, alone, won’t take me 20 minutes!
So, we continue to take life one day at a time…praying for wisdom, discernment and AN ABUNDANCE of GRACE as we all let down a bit after the adrenaline rush of the past 6 months. I still feel like I’m on that raft adrift at sea but no longer on the open, choppy waters…now it feels like we’re cruising along the coast in sight of land!
Stay tuned for the pics we’ve promised!!!!!
We all had a great night’s sleep. Rudy is experiencing lots of something he hasn’t before–peace and quiet. Not sure what he’s thinking, but he is calmly looking around a lot in these new surroundings. He’s breathing well and just drank down his whole bottle this morning. It’s almost ten and I think he’s wondering why the morning doctor parade (rounds) is late. Hope they aren’t too sad down at UCLA.
Trish and I are getting ourselves set up here with Rudy’s equipment, medicines and now understand why hospitals throw so much away–much easier to toss things and get a new one out of supply next time than clean and store. But we’ll get the system down.
We so appreciated Greg Lawler coming down and taking pictures most of the day through discharge, the drive and arrival home–I think some people were wondering if we were famous enough to have a papparazzo running around us and snapping away. Can’t wait to see the pictures, but he was nice enough to post a great one to get us started. While you’re at Greg’s site, Livy fans might want to check out his pictures of her ice skating trip. She’s the one with form like Sonja Henie and teeth like a Detroit Red Wing. Nice to know talented people–thanks, Greg.
Very tired. Richly blessed. Life is beautiful.
Good night, precious friends.
Trish, Rudy, and I have just entered Santa Barbara city limits–almost home and very excited!
As a side note to all of those concerned citizens out there, Rolf is not writing this while he’s driving. Someone at the office is putting it up for him.
We are glad to announce that we are now, at 2:50pm, on the road home with Rudy! Praise God!
No, I think the better question is…”How much stuff can one baby accumulate in 6 months?”. The answer is…ALOT! After 3 trips with the wagon, I’m really thankful Rolf has a large truck bed because we’re filling every inch. It’s 11:30am – Rolf ran down to the pharmacy to get Rudy’s meds, Rudy is testing his car seat to make sure he can tolerate a long ride in it and I’m finishing packing up his room. We’ve had a constant stream of nurse and doctor friends come in to say goodbye but it doesn’t feel rushed or overwhelming which is nice…It has been a calm, comfortable day so far. We hope to hit the road no later than 2pm today which will put us in SB around 4pm. We’ll meet the home care nurse at our house at that time and then we’ll get him settled with the help of the nurse as she has to check and make sure everything is assembled and working properly. He has a feeding pump and poll, a mister-thingy to humidify the air he breathes through his trach and the suction machine…pretty managable. Our friend Greg is coming to document the trip in pictures so be sure to look for the pics soon…Bless you all!!!
Today has been a fast-paced day and I’m not even sure what kind of time I have to post right now, but so much has happening I don’t want to be incommunicado with all our fans out in Rudy-land.
Today started with a bit of a wrinkle (actually more than a bit of one) when Gwee, our discharge planner, came in and had to tell me that there was NO WAY Rudy could go home on Tuesday. As there was quite a bit of back-and-forth among the medical teams and the discharge timeline only came clear over the weekend, there were details regarding home health care and equipment that hadn’t been lined up yet and there was little-to-no chance that the agencies, appointments and insurance approvals could be lined up in one day. Needless to say, I was a bit dismayed hearing anecdotes about patients being kept at the hospital for days simply waiting for all the home care arrangements to be set up. Over the past six months I’ve learned there isn’t much to be won by griping about or fighting the system–you really just need to do everything you can to get it to work for you. It would have just been really depressing to have the day we’re waiting for put on hold for something other than Rudy’s condition, but the team here is also not about to do anything to jeopardize the amazing progress he’s made. They couldn’t let him go home without being certain that a home care agency was in place with all of the necessary equipment, so I had to call Trish to delay her departure. Bummer.
The sticking point was securing a pediatric home health nurse to get us set up on one day’s notice. I didn’t know I had “people”, but it turns out I do. I left a message for our friend Tera (a PICU nurse in SB) and she called back in short order with good information on an agency with nurses she knew well (yeah, Tera!). One phone call later saw me bounding through the unit to let Vicky and Anita (cardiac Nurse Practitioners) know that we had an appointment for 4pm tomorrow. Not quite sure how I did it, but I’ll credit the hand of providence–the discharge folks had called the same agency and had no luck. Doesn’t really matter–I gave Trish the go ahead to start rolling.
Rudy’s been wonderfully stable all day–he’s doing fine on room air with no oxygen. In between discharge briefings and demonstrations of my nursing proficiency, the stream of farewell visitors began passing coming by as staff who aren’t going to be here tomorrow wanted to come wish Rudy well. It was a fantastic afternoon, so Nurse Shelly got me and Rudy set up for a trip to the patio, but this time it was much more simple–no monitors, no oxygen, no nothing. It took me awhile out there before I realized I could just pick him up and walk around, which is how Trish found us. You celebrate the simple things, like being able to hold your baby and spin around without having to worry about getting tangled in lines.
Right now it’s well past midnight and we’ve got to try to get some rest, but I’m not sure how much sleep we’ll get–just too much adrenaline and expectation.
Random observation: The length of our stay here was brought forth in a new way when I encountered Dr. Federman here in the unit this morning. She was attending the week we brought Rudy into the unit and about to go on maternity leave. You know you’ve been in the hospital for a very long time when your stay elcipses the maternity leave of one of your doctors…
Stirring reality check: I was eating take-out down in the basement lobby last night when I was approached by an unfamiliar couple asking me if my name was Rolf. They went on to say that they had come across Rudy’s Beat in researching treatment options for their own unborn baby and our story had a part in bringing them here to UCLA. There little girl was born a week ago and is now in the NICU. In just the brief chance we had to visit before they made the walk off to Tiverton House to spend the night apart from their little one brought on the unique experience of feeling wildly divergent emotions that is part of life in these realms: joy for progress, empathy for another’s struggle, comfort in finding others whose eyes communicate more deeply than words ever could. Our celebration over our departure from this battlefield is genuine, but at the same time burdened for others who engaged in their own fights. Hang in there, Shawn and Anna–thanks for saying hi.
Tuesday will be a big day and it’s highly unlikely we’ll get to posting anything, though we may try to give remote updates on status. In addition to the discharge conferences, we’ll spend most of the day saying goodbye to the exceptional group of people who have come alongside us on this journey. By way of tribute, we’ve compiled a photo album of those we’ve been able to capture over the last six months. We can’t say thanks enough!
 |
| Team Rudy |
(it may take some time to load, but then enjoy!)
This is Rudy’s IV stand. It is as fine a piece of equipment there could be. Tall, stable and highly mobile. I’ve never really pondered the IV stand. It’s just always been there doing what it’s supposed to do. It stood by his bedside and accompanied him on every trip for every procedure. It once bore a lot more pumps than can be seen now–in fact it once was part of a set of as many as three that were arranged around him. I mention it today because the astute observer will notice that there aren’t any lines that can be seen, because it’s NOT ATTACHED ANYMORE! For the last week or so, it’s only been hooked up to deliver a few meds, but with the removal of the last pic line today there’s no way to attach it to Rudy anymore. I think it still has to be in the room on standby, but every chance I get I push it further away from Rudy’s crib.
The team drew the final labs at noon today and after all of the counts (liver, Potassium) were what they wanted to see, the pic line was removed. There were some strong feelings about this as it had been in around 40 days and Rudy’s had them in a lot shorter than that before they got infected. There have been reports that our otherwise civil and measured cardiothoracic surgeon allegedly threatened to put a line in one of the fellows if it wasn’t removed by a stated deadline. I’m guessing with it’s removal that such measures did not need to be taken, but I may just check the common points of insertion during rounds.
Rudy (and his Daddy the nurse trainee) have made good progress today. He was switched over to room air this morning, so he’s just getting a simple mist blown to the front of his trach. His 02 sats are looking good. We’re trying to keep consistent with feeds–he usually takes about 20-30ccs by bottle and then we put the rest through his Gtube. We don’t want him to mess too long with the bottle and get tired out and we also want to make sure the feeds don’t drag on too long so that there’s good space between them in order to build an appetite. We’ll look forward to making progress on this at home because, even though we are trying to regulate the environment there are a number of distractions here in the hospital that upset the schedule.
On Monday, there will be some final discharge discussions. Dr. Dan would like to do a discharge echo on his heart and then there needs to be some coordination on weaning his different medications. He’s on an awful lot of drugs due to the number of issues he’s had, so there will be some thought given to what needs to be in place with him in the long term. The team will also make contact with our pediatrician and cardiologist in Santa Barbara to insure a good continuity of care.
There has been quite a buzz around the unit regarding Rudy’s progress. Everyone is truly excited that this little warrior’s sojurn is coming to an end. There have already been a couple of goodbyes as folks come off their shifts and there’s no denying the emotion we feel about these people who have been so dedicated to Rudy and our family. I expect there will be a lot more feelings over the next two days. I can’t wait until Trish gets here tomorrow morning for the last push.
But before I close, I should mention something else that has caused a buzz in the unit. Today I perfected my Pacificier Retention System (trademark). I can’t claim the original germ of the idea as I believe Nurse Aliza was responsible for that, but after another night of standing at Rudy’s bedside and holding the paci for him, I finally figured out a way to stabilize things without making them too tight. I just needed to poke two more holes into the pacifier for the ear loops (which one obtains by cutting the elastics off of two hospital face shields). Cutting a notch in the top allows ample room for the nostrils. Dr. Lee was so impressed he grabbed supplies to take home for his newborn son. To think, they have the equipment here to do multi-organ transplants, but nary a PRS. Yes, six months in the ICU gives you a tremendous amount of time to think.
It’s almost midnight here at UCLA and I’m just getting a chance to sit down and collect my thoughts at the end of a very full day. I rolled out of SB early and made it here by 9am as the PICU team was rounding. Over the past few days, I’ve been in communication by phone with various members of the team and gotten updates on the discussion regarding Rudy’s treatment and discharge plan. We are so grateful that Rudy’s care involves a team of people from various specialties and different perspectives; so it took a few days to gain consensus. But as of this morning it looks like we are working toward a BIG day on Tuesday. In a perfect world, some members of the PICU team would have preferred for us to have a full floor trial, where a significant step down in attendant care would allow the team to see more clearly how capable Trish and I were in providing Rudy’s care. But the hospital has a severe shortage of floor beds so, it’s been decided that Trish will come on Monday and we’ll do something similar here in the unit for 24 hours.
In the meantime, I’ve continued to demonstrate my proficiency in caring for Rudy–administering meds through the G-tube, doing feeds with the bottle and the pump, changing the trach, and changing lots of diapers. Today a technician delivered some machines and supplies we’ll be taking home and showed me how it all fits together–pretty straightforward and the reality of where we’ve spent the last six months was made clear by how familiar all the stuff was to me. I think I stole some of his thunder as he didn’t have to give his full spiel with all the details.
Rudy is still getting a small oxygen boost and some vapor mist from the trach collar around his neck, but tomorrow the respiratory team will take that away so he can breath room air. His 02 sats have been quite high all day (even to the point of setting off alarms), so it looks like he’s ready. He still has the subclavian IV in, but nothing is attached to it as all the IV meds are discontinued. The team has kept the port in so they can easily draw labs–there is still some concern about his potassium and eloctrolyte levels but that seems more a matter of balancing out his meds. While the line isn’t much of a physical nuisance, there have been some strong voices on the team for its removal just to eliminate any chance of infection.
Rudy also needed to get a hearing screen prior to discharge so two nurses came to do that today. We have to admit that we’ve acquired a level of anxiety with just about any test he’s subjected to, so we’ve had our own little celebration in the wake of him passing! Hear, hear, Rudy!
These developments have made for a busy day for me such that I don’t think this post matches the level of excitement we’re feeling. It’s great to be in the home stretch–please pray that these next few days would be smooth, so that Rudy (and his parents) would continue to demostrate that we’re ready to go!
Rudy's Beat 