Rolf has more of a medical update coming later today but I just wanted to send you a quick love note from our family to you!
I woke up to a wonderful Valentine’s breakfast of scrambled eggs and orange juice prepared by Max and Olivia and just finished a lovely grilled cheese sandwich lunch prepared by Wilson. I’m getting spoiled here at home and we are soon off to Max’s basketball game. We’re all missing our other two Valentines in L.A. but it sounds like they are having a nice, relaxed day together. More soon…
40 more minutes and it will be Friday! We made it to the end of a long, full week. It’s clear this week was a turning point in Rudy’s recovery. I’m not sure Rudy’s condition has changed much but how his condition is being managed has changed dramatically. The tracheostomy performed on Tuesday allows the team many more options in getting Rudy off the vent with little discomfort for him unlike the trauma of extubating and intubating him over and over. Rudy is definitely more comfortable with the trach and now that the focus is off extubating him, the team has been able to tackle the feeding issue pretty aggressively. Yesterday’s gastric emptying test and today’s upper GI contrast test confirmed that there is a delay in Rudy’s digestive system which means the best way to get feeds to his gut at this point is through a GJ tube that goes through his side and directly into his intestines. The team is hoping the surgical procedure to place the tube will happen early next week as everyone is eager to start his feeds. A MRI was also conducted today to look for any possible reasons for the fevers he has been getting which have compromised his recovery in general.
The big push to see Rudy past all his major hurdles is, ultimately, to get him home. The felt need to get him home is growing increasingly urgent as we get closer to the Glenn (Rudy’s second open heart surgery). I agree that we need to get Rudy home and I see that the steps we’ve taken this week are positive ones for him but the steps taken this week also require a huge mental adjustment in what I expected bringing Rudy home would look like. I envisioned our elevator ride with a baby free of restraints and restrictions…not trach, and possibly vent, dependent with a feeding tube. As much as I want to take Rudy home, I admit that tonight I’m overwhelmed and feeling alone. Pushing to get him home does come at a cost…the burden of his care and recovery will fall on us at home to a greater extent than I expected and that’s intimidating. Now, none of this comes as a complete surprise as these treatment options were explained to us many weeks ago as “possibilities down the road” but, of course, I hoped and prayed we wouldn’t get to this point. I feel like I’ve been naively running this marathon for four and a half months thinking that the day we bring Rudy home will be our finish line only to find out this week that this has just been the warm up…the marathon hasn’t even begun!!! Oh, I know, we’ll rise to the occasion, we’ll learn all we need to know to take care of his special needs, it won’t be like this forever, our family will adjust to the things that make Rudy special, Rudy WILL one day talk and eat In n’ Out Burgers with his siblings and someday I may even take a trip to Hawaii and do nothing but lay on the beach for a week, but being confident of all this doesn’t make me feel any better tonight for some reason. I’m tired and weepy and sad and really fighting the urge to indulge in some major retail therapy.
Enough about me and my pity party…the good news is that they started to turn Rudy’s vent settings down today, had him on an one hour sprint this evening while he slept comfortably in my arms and he has been breathing on his own off the vent completely for the past hour. He’s doing great at the end of a full day with two field trips!!! He’s pretty excited to show off for Daddy tomorrow. I guess it’s time to head to bed and get some rest…”afterall”, as Scarlet O’Hara would say, ” tomorrow is another day”.
I couldn’t let today pass without mention of Rudy’s 19-week bday!!! We celebrate him tonight as he eagerly sucks on his “new and improved” pacifier complete with ear ties to keep it in place! 🙂 He has promised more than one nurse to be their Valentine so I imagine he’ll get alot of attention in the next couple of days with visits from nurse-friends during break time. So thankful to God for his precious little life so far! Happy Birthday Rudy!
Rudy, Nurse Kelly and I had an early morning field trip down and over to nuclear radiology today for a “gastric emptying test”. RT Oscar and Fellow Julianne helped in the transport to a whole other building in the medical plaza through a basement corridor – quite an adventure. The test involved the tech putting 30 ccs of formula laced with a tracer into Rudy’s stomach through an NG tube in his nose. Then they put him under a scanner for 90 minutes and every 15 minutes they took a minute-long picture of his stomach to see if the stomach was emptying normally. The challenge was to keep him still as he didn’t get his morning pain meds in preparation for the test so I stood next to him holding his pacifier in place and stroking his hand the whole time…so sweet! The preliminary results indicate that Rudy’s stomach does have a delay in emptying. This is not a huge surprise but the question now is “why?” and “is this a permanent condition or just another one of Rudy’s systems that is slow to kick in?”. The next step is to do an Upper GI contrast test which is scheduled for tomorrow. It’s similar in that they’ll put formula mixed with contrast down his throat and watch it’s journey to the stomach via fluoroscopy looking for any obstruction. So, the information gathered from both tests will help determine the next step…most likely a GJ feeding tube that goes directly into the intestine through his side.
Like the trach, this is another treatment option explained to us a while back that we hoped Rudy’s journey wouldn’t come to but it looks like that may be where we are headed. From what I understand, a modified nursing schedule in conjunction with the feeding tube may still be an option if Rudy can learn to latch on so I’m praying to that end. This is a really full week for Rudy…an aggressive push to make some progress which is good but it’s also generating a ton of information to process. Not that we have many options but please pray for clarity of mind for me and Rolf as we digest each nugget of information comin’ our way…no pun intended! Please pray for Rudy’s comfort this week as well as he is being messed with a great deal while trying to heal from the tracheoscopy. Such a sweetie-pie!
‘Just a couple more “trach day” pics of the precious one awake and comfortable. He woke up for a little bit but fell back asleep after his afternoon pain meds. 🙂
Dr. Shapiro called from the OR at 12 noon to say that Rudy did well and they were finishing up. They wheeled him into his room at 12:20pm and he is resting…slowly coming off his sedatives. He is so precious! It’s a little troubling to see a tube coming out of his neck but the exciting news is we can see his beautiful face completely tape-free!! He’ll have to stay still today but I can hold him again tomorrow. They’ll have to watch him closely for 7 days…next Tuesday they’ll change out his trach tube and then begin to train us how to do it – yikes. So, our little man has some more recovering to do. The trach is a tough emotional hurdle for me – more so than his open heart surgery which was a hundred times riskier – and I think it boils down to the fact that the trach is a visible reminder of his limitations at this point. Everyone’s feeling is that this won’t be permanent for Rudy and I trust that will be the case. So I’m trying to keep it all in proper perspective in the midst of the emotions of today. Rudy inspires me to keep fighting…if he can fight so hard for so long, I certainly can too. Thank you for persevering with us in prayer! What would we do without you all?
Rudy couldn't come, but we brought him a souvenier!
As Trish already mentioned, our weekend was a bit surreal. Olivia, Wilson and Max got a huge morale boost by our two days at Disneyland/California Adventure. It was cold and rainy enough that we had to seek shelter a few times, but it also served to keep the crowds away. We watched the kids get lost in the experience, laugh and have fun, try some new risky things (like Olivia and Space Mountain) and come away thrilled. I found myself trying to learn how to feel two very conflicting emotions at the same time; sharing the joy of the kids’ experience while feeling burdened and heavy for Rudy and the struggles we knew he was having over the weekend. It brought us again to a place of feeling very torn–we have a baby in ICU and it kills us to not be there, but in front of us there were three kids who were finally getting some respite from months of upheaval who need us just as much as Rudy does. So I often found myself in a bit of a stupor–loving the fact that my kids were care-free and bouncing around with smiles on their faces, yet troubled that I have a baby in critical health and I’m at an amusement park. Wish there was a guidebook for such things.
Rudy was on a rollercoaster of a different kind and we’re so glad that Oma was keeping an eye on things at the hospital for us. On our way back from Anaheim, we stopped at the hospital to pick her up and drop off Trish. While there we had a long check in with Dr. Rick which brought us back to reality a bit quicker than we may have hoped. This week, there are three items on the agenda for Rudy: A tracheostomy, a gastro-intestinal consult, and a neurological exam.
None of the three terms seem all that warm to us, least of all the first. Rudy has had two very solid attempts at breathing on his own and was not able to maintain things without the accumulation of mucus in his lungs. As all of the conditions were seemingly right for these two attempts, there isn’t much reason to believe trying again in a few days or a few weeks will bring a different result. On top of this, re-intubation is a disruptive procedure which has been shown to negatively impact Rudy’s heart rate, so having a port in his neck to breathe from can give the team more options with the ventilator and allow them to suction the lungs more effectively. It’s obviously an option one hopes not to take, but it is viewed as temporary–as patients grow bigger and stronger they are able to eventually breathe normally. As it turns out, the ENT specialist Rick contacted today and really wants to involve happens to have an open OR window tomorrow (Tuesday) morning at 10, s0 we gave consent to go ahead with this procedure. As part of the process, they do check the trachea and lungs very carefully just to see if there is some kid of physical obstruction which may be causing problems, but Rick isn’t expecting them to find much. We should be prepared for the tracheostomy.
The team is also going to look closely at Rudy’s stomache function as he has had difficulty with every attempt to feed him thusfar. As we spent most of our discussion on the topic above, we’re not sure all that’s involved here, but they do need to get some specialized input on what might be going on here.
Lastly, Rick wants some good imagery done on Rudy’s brain mostly because there is no good explanation yet for the consistent fevers he has. We want to be sure there isn’t any kind of abscess in his brain that might be hiding somewhere. There’s not much evidence of neurological issues with Rudy, other than a tendency he has of looking to his left more than the right–but this could might be more out of habit.
Three pretty big things to grapple with and we were grateful for Rick’s forthrightness and care in explaining them to us. We trust this team and their commitment to Rudy and our family. Very little is known about HLHS and why it strikes, but so far there is no link drawn between it and the incidence of other conditions. From my layman’s perspective, the same steps needed to correct this heart lesion also inflict trauma on a delicate little newborn body. Recovering from them presents quite a challenge. Most readers would have to wonder if we’re going to extreme means to help a little boy who can’t breathe or eat and, having discussed this with Dr. Robert, I took the opportunity to ask Dr. Rick. It’s a conversation you can’t quite believe you’re having about your child, but the assurances we have from both of them are that their plan for treatment still views Rudy’s issues as surmountable and that he will move beyond them. So we cling to that amidst twists and turns on a rollercoaster scarier than we’d ever dreamed.
Please pray for Rudy on Tuesday at 10am PDT as he’ll be in surgery. Trish will be on hand and will post updates accordingly during the day.
Not that I need anything visible to keep Rudy in the forefront of my mind but if I did, Disneyland would be the place to be! Rolf and I were amazed yesterday at how many infants were being toted around the park in the middle of a rain storm…not a statement of judgement but an observation that filled our day with mixed emotions. One minute we were scurrying around the park hand in hand with the older kids enjoying their sqeals and outbursts of “This is awesome!” and the next minute deeply distracted by our thoughts of and concerns for Rudy. As surreal as the day was for me and Rolf, it was so great for Wilson, Max and Olivia and good for us to be together doing something special. This morning the kids woke up talking about what fun they had and what their favorite experiences were. They sure deserved the day and we pray the memories of it will encourage them in the weeks ahead as we continue on Rudy’s road to recovery.
A "meet and greet" with Minnie
A visit with Mickey
It seems our preoccupation and concerns were warranted in particular as we got a call at 3:45am this morning informing us that Rudy was going to be intubated again. We knew that his chest xrays were looking progressively worse in the last couple of days, but it was clear last night that his right lung was collapsing, his breathing labored and his sats dropped to the point he needed to be put back on the vent. Dr. Andy called us when he was done and said Rudy was already stabilizing. Rolf and I aren’t surprised but it is a discouragement…Rudy sure has had an eventful few days in our absence which makes it even more challenging to be away. I’m looking forward to resuming my post at the hospital later today and will stay with him until Friday.
We’ve come to accept that, as Rudy’s stay in the hospital keeps extending itself, the demands of life and needs of our other kids are such that we can’t be with him around the clock. Even with that, it does feel surreal for both Trish and I to travel out of the area. We’ve had two places to check in on by phone over the last couple of days and are glad that kids in both places seem to miss us, but are doing well thanks to friends and professionals serving our family so generously (thanks Pammy and Robin for sitting with Rudy; thanks Sherry, Lisa and Emily for being so sweet to the Goleta three).
It would have to be a very rare person and relationship that pulled Trish and I away from Southern California right now. Uncle Rixie was that kind of person and we participated in a wonderful celebration of his life on the Stanford Campus. It was a beautiful afternoon and Memorial Church was lit up with the afternoon sunlight coming through the stained glass windows. It made me think of the times Rixie would walk with me through the church and, ever the historian, would tell of how Jane Stanford used to probe the carvings during construction with the tip of her umbrella to make sure the workmen were making them deep enough. Most touching was rediscovering his favorite quote carved into the West Transept which from then on became my own:
There are but few on earth free from cares, none but carry burdens of sorrow, and if all were asked to make a package of their troubles, and throw this package on a common pile, and then were asked to go and choose a package which they were willing to bear, all would select their own package again.
Your heartaches may be great, burdens heavy, but look about you, and with whom would you change?
Kind of fits with most seasons of life, but particularly this one. I don’t want anyone else’s problems. I’ll stick with my own.
We could have had a service that lasted for hours, but representative speakers did a great job capturing Rixie and the tremendous impact he had on so many lives and the University in his trademark way. One of the highlights (and Rixie would have LOVED it) was hearing Trish sing like an angel from the choir loft accompanied by the huge 1901 organ. Two amazing sets of pipes!! When I have more time, I will try to figure out if I can post recordings of her singing–it’s soooo cool!
Back at UCLA, Rudy is holding steady. Most comforting to us is the fact that he is resting and calm instead of being fussy. The team is keeping him sprinting and he’s making it through three 3-hour sprints a day without problem. The chest Xray looks very clear, so we’ll wait and see if they want to pull the tube again and give him another shot or if they want to get more clarity on why there were such secretions in the lungs last time. So glad we’re in the era of cellphones so they can keep up apprised as we drive back.
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.
Sleeping with his syringe...
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.
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! 
Rudy's Beat 