We saw Dr. Harake yesterday (SB Cardiologist) and he was pleased with the Pulmonologist’s report from Tuesday. Rudy’s echo looked sound as well so this has been a good week for our little man. Dr. Harake still feels we have some time before the Glenn…we get the impression from the UCLA team that they would like to move forward so, at this point, we’re going to let all parties discuss the situation and come up with a plan. As much as we would love to get the Glenn over with, we trust the professionals to come up with a plan best for Rudy.
In the midst of all the doctor appointments this week, we did have time to catch Rudy on video doing what he does best…being cute…
Rudy’s therapist wants Rudy sitting up more and, thankfully, he is tolerating it more and more…it used to be that he couldn’t sit up more than a few minutes but this week he sat comfortably for 15 minutes!!! Rudy enjoyed some “sibling therapy” while practicing sitting up earlier this week…
And then my two hams wanted to teach Rudy one of our old family favorites…
Later that day, Wilson had time to love on the big “sittin’ up” boy…
It is the eve before Rudy’s 1st birthday and the memories of this time last year are both a big blur and so vivid. It feels like de ja vu as, like last year, we are busily preparing for the Rescue Mission’s annual fundraiser that is happening this Saturday. Rudy came just 3 days before the Bayou last year and I think we must have sent a few folks into a bit of a panic when news spread that we were at UCLA but it all worked out wonderfully…Rolf and I were able to make it back for the event after Rudy was safely settled in the CTICU and before his heart surgery the following Monday and I remember it being such an encouragement to be in the company of so many dear friends in the midst of our whirlwind start to our journey with Rudy.
Here we are a year later and I can’t help but remember the times in the CTICU when we were naive but also intuitive enough to know that the concerned look on the docs’ faces wasn’t a good sign…or the call I got from Dr. Marie when she told me they had to do CPR on Rudy and I RAN back to the hospital with tears streaming down my face terrified of what I’d find when I got there…or the week in December after several surgical procedures in a row when Rudy’s hair fell out and he looked like he had had ENOUGH! So many memories both hard and wonderful and tomorrow we add to the wonderful memories.
I’m not sure what I thought life would look like at this point but I do feel like we’re doing better than one would expect. I’ve been asked lately how we’re doing and I’d have to say we’re doing well. We are managing the essentials of home and family…our lawn may be dead, but our sheets are clean…our photos aren’t making it into the albums but homework is getting done and turned in on time. I think the most noticeable longterm side effect is our lack of energy…life feels pretty balanced when we are engaged in the normal routine but when something changes, is added to it or we are faced with a minor annoyance, Rolf and I notice the lack of reserve. This isn’t to say we don’t have our bad days or aren’t preoccupied by the stress of work, money, Rudy’s upcoming surgery, kid concerns, etc. but the big picture is blessed.
When we brought Rudy home from the hospital back in May, I remember hoping he’d be sitting up by his first birthday and, I suppose, we could obsess over all the things he’s not doing yet but the reality is he HAS come a long way. Four months ago, he was still looking predominently to his left unable to reach out and grab for objects. Now he is able to track with his eyes moving his head from side to side, he can grab his little paci toy and get it to his mouth, he is starting to roll to his side, he is kicking his legs in excitement and, of course, he is smiling more and more…that reasurring smile that absolutely brightens the room. He is even learning how to play “peek-a-boo” as demonstrated in the video below:
Bottom line: Our one-year-old is limited in ways but knows only LOVE, LOVE, LOVE and gives so much JOY, JOY, JOY. Rudy’s reality may not be perfect but it is rich. How grateful we are…
Fans of Rudy often comment on his winning charm and determination. This is a trait shared with his siblings, something which was fully evident today. Among the heightened activity this week, big brother Max decided to run for student council vice president of La Patera Elementary School. His campaign platform probably garnered many votes by virtue of its ambitious agenda on many of the key issues: the pursuit of happiness (more money for sports equipment); the First Amendment (establishment of a school newspaper); health care (a hand sanitizer in every classroom) and personal privacy (higher bathroom stalls). But recognizing that some voters might base their decisions on style over substance, he borrowed from McDonald’s to create a creative marketing campaign for his posters–“Big Max…I’m lovin him!” The week of pressing the flesh culminated in the campaign speech he taped for the school’s in-room video system. Here’s a copy of his dress rehearsal at home.
As you might already have inferred by virtue of the fact that I’m posting it here, Max phoned me happily as soon as he got home from school to report that his campaign was successful. It brought to mind my own glory days in the realm of politics (Student Council President of Madison High School back in 1985). Perhaps with the sun setting on Hyannis Port, a new Camelot begins…
Rudy may be behind in many ways developmentally but no one can argue his stellar performance in the hair-growing department. After Dr. Rick accused us of blow-drying Rudy’s mane to get that frothy trademark look of his, I decided it was time to give the boy a real haircut. Wilson and Max didn’t have their first “big boy” haircuts until they were nearly 2 yrs. old…Rudy was way overdo at 9 months!!! So, with Rolf’s help holding the poor boy upright and still, the curls fell fast with every snip of my scissors. What emerged is a handsome boy looking well beyond his years (or months?). In addition, now that the rest of his hair is shorter, his bald spot in the back doesn’t look quite as obvious!
While everyone was understanding, the only thing that would have improved Friday evening’s dedication service would have been for Rudy to be awake for more of it. We are really grateful for the way he has developed since bringing him home–he’s much more aware of his surroundings, looks all around (instead of just down and to the left) and is even starting to grab for things.
This week we’ll be getting our first home visit from the OT/PT team, but in the meantime I’ve gotten a bit of a jump on things with my own regimen. Click to watch a video Rudy’s latest trick:
Today was a great day…one of the only crisis-free visits we’ve had with Rudy and all the children together. There was no need to usher the kids out of the room because of an “episode”, no frank talks with Drs that left me wiping away tears so the kids wouldn’t see, no family meal in the cafeteria with Rolf and I sitting catatonic…
The kids and I got an early start from home and made it to UCLA at 10am. We found Rudy in Daddy’s lap just hanging out. Max quickly took Dad’s spot and held Rudy for a little bit and then all the children accompanied Dad to his CPR training. Like a good Girl Scout, Olivia was able to answer a number of Nurse Katie’s questions because of her “First Aid” training at a Brownie Troop Meeting this year! I tried to nurse Rudy while they were all out of the room but he wasn’t too interested so I ended up pumping and giving him a bottle. When everyone returned, we packed up the red wagon full of Rudy and his gear and headed to the peds patio…making sure we paraded through the CTICU on our way. It was a beautiful, sunny, breezy day here in L.A. and Rudy’s very first venture outside was a special one with everyone in tow. True to Rudy’s norm, he was asleep for a good big of this momentous occasion but woke up towards the end…
The very first sun to hit Rudy's face!
Check out Rudy’s first experience with a little breeze on his face and siblings playing in the background:
Take a look at Rudy’s entourage:
When we returned to Rudy’s room, Rolf and I had a few more “home care” lessons and the kids entertained themselves for a good bit conducting a teddy bear health clinic…
Nurse Olivia
Procedure in progress
Drs. Geyling
Wilson got his turn to hold Rudy for a bit and before we knew it the afternoon was gone and it was time to drop the kids off at dear friends’ for a couple of days of spring break fun!! Understandably, Rudy was pretty wiped out and had a good nap while we packed up to go. Rolf dropped me off back at the hospital around 9:30pm, said another goodbye to Rudy, and then headed home to Santa Barbara…I’ll stay with Rudy until Wednesday, pick up the kids and we’ll all head home as well to spend the last half of spring break at home – celebrating Wilson’s 12th birthday and making more preparations for Rudy’s homecoming. It was a whirlwind day full of excitement and adrenaline…I think it was quite encouraging for the children to see Rudy doing well and to hear the nurses and docs talk about his discharge. It’s starting to sink in for all of us -Amazing!
Check out our super star today…he took to a bottle of breastmilk with great ease and showed-off for OT Nicole how he can down 15ccs (=1/2 ounce) in 2 minutes!! Ha Ha Rudy reached the goal of full feeds (30ccs/hr) around 3am…they started him on breastmilk this morning at 11:00am and as of 9:00pm there hasn’t been any fluid drainage…they’ll want to watch it close for 24 hours but so far so good! Today is also Rudy’s first full 24 hours on the trach collar and he’ll stay off the vent indefinitely at this point. I think it’s kind of interesting that he reached both target goals on the same day! Break out those beads!!!
As for me, well, my day was rather full. I was trained in CPR for an infant with a trach and in the daily trach cleaning process as well as the cleaning of the g-tube AND I changed out Rudy’s trach for the first time (something we’ll have to do at home once a week). It all went smoothly. All of Rudy’s care will be time consuming, at first, but doable. My biggest concern in bringing him home, at this point, is keeping him infection-free between now and his Glenn surgery…don’t be surprised if you see our family walking around with travel-size bottles of hand sanitizer hanging from our necks! 🙂 Rudy’s room was one continuous string of folks coming in to talk to me about all kinds of treatment details. We’ve only just begun this discharge process and already there is too much information to process and retain but like we’ve done from the very start of this journey we just need to take it ONE DAY AT A TIME.
Rudy and I got to say our first “goodbye” today to Dr. Rick. He will be gone the next two weeks and he came in to say goodbye at the end of the day because, as he said, he hopes we’ll be gone when he gets back. Ha Of course, we’ll see him soon enough at our follow-up appointments for which we’ll need to come back but it was nice to say an official goodbye nonetheless…another step closer to home.
Speaking of home, I hope to get an early start for SB tomorrow as I’d like to stop at WalMart on the way to get a crib mattress and sheet for the little lad. Rolf will come for his normal weekend shift with Rudy and then the kids and I will come to LA for a couple of days early next week for the start of their spring break. We might get to take Rudy outside for the first time (on the peds patio on our floor) on Monday if I can get it coordinated with the nursing staff and folks over at Child Life. Please pray the logistics of that outing will come together…it sure would be a special moment to share together as a family. The first of many, many shared moments to come, we pray!! Lovin’ you all from Rudy’s room…
Sure, we know that Rudy’s ability to breathe on his own should probably be the primary factor in the decision, but Trish and I would also like to let it be known that eventually the alarm from the vent will lead to our own institutionalization. We’ve mentioned before that the leak around the trach sets off an alarm on the vent. There’s a medical reason for this. The leak is a good thing, but I can’t really tell you why after having to sleep next to the machine last night. You can’t shut the alarm off, but you can disable it for a few minutes which means the nurse needs to walk over about every 3 minutes. Might want to reserve a few extra beds on the psyche floor downstairs. I think we’ll all be going together.
We’ve told you it’s annoying, but it may be better to let you hear for yourself. Turn your volume up as loud as it will go and then play the clip repeatedly for about 3 hours. For bonus points, try to take a nap. You’ll see why we celebrate that they can turn the machine off as Rudy is able to go on collar sprints for 6 or 7 hours now. But we still can’t get the sound of that alarm out of our heads…sometimes it’s even louder than the voices.
Alrighty, today marks week 24 and Rudy continues to march forward. His trach collar sprints were lengthened to 4 hours so we are getting closer to getting rid of the ventilator! Earlier this morning there was talk of introducing breastmilk again but that has been put on hold until the PICU team consults with the GI folks again. It would be advantageous to feed him breastmilk while the drainage tube is still in so we can see real quick if chylous is accumulating again, however, Rolf and I were concerned it would be too quick of a change since he’s only been feeding for a couple of days…he’s getting nutrition from Tolerex (a low-fat formula), he’s tolerating it so far and he’s comfortable so we’re not opposed to giving him a few more days to stabilize. So, we’ll see what the team thinks after consulting with the GI specialists. As a result, he’s still at 10 ccs of formula an hour and doing well with it.
Speaking of breastmilk, it appears my idea to figure out a way to “skim” my breastmilk isn’t such a crazy notion after all. The reason Rudy’s system has been unable to tolerate my breastmilk has to do with its fat content. The long chain tryglicerides (fat) contained in breastmilk are absorbed into the lymphatic system and end up draining out the chylous fluid. As a result, treatment for chylous invovles a medium chain triglyceride-enriched diet (i.e. Tolerex). One day a few weeks ago, I left some breastmilk on the counter and when I came back to it, it had separated and it dawned on me that maybe there’s a way to skim the fat off the milk which, then, might possibly allow it to get absorbed into the body. I shared my idea with a couple of the fellows who were open to discussing it more and then I talked with Christy (lactation nurse) today who said she worked with a mom about 4 years ago whose 4-month old baby had a long battle with chylous fluid and she ended up doing just that!!!! She found a “spinner” that would separate the milk and Christy had a device that could test the fat content to make sure it was low enough. This mom gave the non-fat breastmilk to her baby and the baby tolerated it well…after a while, she gradually increased the fat in the milk until ultimately the baby was on “full-strength” breastmilk. Isn’t that amazing? Anyway, it gives me something to research and a known case to bring before our medical team if Rudy’s case comes to that. At least there’s hope that if his body doesn’t absorb my breastmilk when we try it next we still may have a “modified” breastmilk option! If nothing else, it keeps my mind busy…
Our little monkey enjoyed sitting up today while on my lap…here’s a little peek:
Wow! I can’t even begin to express how grateful I am for all the love and best wishes sent my way today. I’m totally overwhelmed by the number of phone messages, texts, emails, Facebook messages, blog comments, cards and gifts from friends and family near and far not to mention all the wonderful face-to-face well wishes from the staff at the hospital! I may not be able to return everyone’s greetings but you must know that I received them all and deeply appreciate every one!!! Thank you…thank you! I’m so grateful
There were a number of things that made today special…it started out with Rudy and is ending with the others all cozy on the couch. In the midst of all the activity I was honored to visit our old neighbor in the CTICU. Rolf and I were touched daily by this precious little girl who fought so hard in the room next to Rudy’s for the past 7 weeks. We saw the dedication of a loving foster family and the CTICU staff that filled her life with love and tenderness. Her precious life on earth ended today and as I walked back to Rudy’s room after saying “goodbye”, I felt so honored to have witnessed this little life…she deeply touched the lives that came in contact with her – I’m so glad I was one of them. I spent the rest of the morning holding Rudy – tight – we looked at each other for a bit until he feel fast asleep. I was so grateful
OT Nichole came for a little therapy and Nurses Barbara and Missi prepared him for some exercises off the vent completely! The weaning began early this afternoon with an hour-long stint with the trach collar and he tolerated it well…another one hour stint was scheduled for this evening and so on!!! He’s doing great. Rolf and Max will head down to L.A. tomorrow in time for the first attempt at feeds through the g-tube! Of course, we’re very anxious to see how it goes.
For now, though, our focus is on Wilson, Max and Olivia as we enjoy a rare movie night together as a family. Freaky Friday is tonight’s movie choice…come to think of it, today was a bit “freaky” but, on many levels, a true gift of grace and love!
a day I was so happy to share with Rudy...
...and the others at home!
P.S. Thanks for the gift of a good laugh today Rolf! Speaking of the 80s, don’t be surprised if the classic college video production of “Rolf: Man, Myth or Mongoloid” gets mysteriously distributed worldwide!!!!
Rudy's Beat 