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?
Dr. Shapiro met me in the hall outside the OR to introduce herself…I like her and her team. She’ll first do a bronchoscopy to see if there is anything obvious preventing Rudy from inflating his right lung and if not, she’ll go ahead and do the tracheostomy. If all goes well, he should be done in 60-90 minutes. Thank you for lifting our little warrior in prayer this morning. Bless you…
Good Morning Dear Ones,
It’s about 9:50am and the OR just called to confirm details for Rudy’s transport downstairs. RT Oscar is doing one last IPV treatment before they take him for the tracheostomy. As Rolf mentioned in his post last night, we know in our heads this is a positive step but our hearts are heavy. I got a little overwhelmed last night as I googled the subject and found sites like “Guide to home care for a child with a tracheostomy”. Not a place we wanted to find ourselves or Rudy but we trust God’s fingerprints will be all over this little detour as well. Dr. Nina Shapiro will perform the surgery and comes highly recommended. Dr. Rick told us yesterday that he’d want her operating on his kids and he wants her for Rudy…period! I’m thankful for her expertise and Dr. Rick’s confidence in her. So, here we go…the transport team just arrived and we’ll be heading down shortly. I’ll post an update when he is safely in the OR! Thanks everybody…
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.
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.
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!
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.
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.
Rudy's Beat 