In honor of our little red-nosed Rudy, Olivia and our friend Anna share this holiday classic… (press the “play” arrow and wait)
As hoped, Rudy did sleep well last night but in the last hour started the high heart rate and low-grade fever again…praying this morning for strength and stability going into surgery!!! Stay tuned…
It has been a cold, rainy, blustery day here in west L.A. so there hasn’t been much motivation to leave Rudy’s warm room. Rudy’s assignment was to rest, rest, rest today in order to recover from yesterday’s procedure and in preparation for tomorrow’s surgery …he started battling a high heart rate off and on last night and that continued all day today accompanied by red-faced tantrums and general discomfort so he has kept nurse Amy on her toes by setting off his monitor alarm practically every time she sat down to do her charting. Hopefully he’ll be able to sleep well tonight (I know nurse Amy will!). He’s number two in the OR tomorrow so he’ll be transported downstairs late morning/early afternoon. It seems to me that it is taking him longer and longer to recover from his “procedures” so I’m praying tomorrow’s pleurodesis will do the trick for many reasons. Dr. Brian will enter Rudy’s side, irritate or “rough up” the lung and chest cavity lining creating scar tissue so they will fuse together and seal off the pleural cavity. It could take the fluid up to 4 days to stop draining so we’ll have some more waiting to do over the weekend. While he’s in there, Dr. Brian will do some other things to, hopefully, increase our odds of success. The team stopped Rudy’s feeds the night before last and although it seemed his stomach was softer and ready for formula again today they decided not to start the feeds back up again until after tomorrow’s surgery…maybe the extra rest for his stomach will do him some good and make the next attempt at feeding stick!!
Happy 11-week birthday Rudy! You’re a pro-fighter, little man…you deserve a trip to Disneyland!!
As Rolf posted earlier, the attempt at the lymphangiogram was aborted after several attempts to find a vessel big enough…Nurse Jenny described how the doctor and his tech were working with vessels just a tad bit bigger than a strand of hair!!! Amazing… It’s disappointing but not just for us…everyone involved in getting this set up is disappointed and there is comfort in knowing we’re not alone. Rudy has rested comfortably since his return to the room, opening his eyes for a little bit and then falling back into a deep sleep. We’ll hunker-down again and wait for the Pleurodesis to take place on Thursday…Rudy has the #2 slot on the list for that day. Dr. Brian will conduct the procedure through an incision on Rudy’s side…essentially going in and “roughing up” the lung and chest wall so the two will fuse together eliminating the pleural cavity. If it does succeed at getting rid of this fluid then the process of weaning Rudy from the vent could begin next week. If it doesn’t work then we’ll have to go back to waiting for the fluid to stop on it’s own. Dr. Brian described the pleurodesis as the last surgical “ditch effort” in addressing this issue. The risks involved in the procedure itself are minimal…the threat of another disappointment – pretty high BUT, no matter what happens, I’m commited to getting up again, readjusting expectations again and moving forward even if it’s ever-so-slowly! I’m starting to feel a bit like Scarlett O’Hara no matter the disappointments…”afterall, tomorrow is another day”.
On a sweet note, Rudy has gotten alot of special attention today, especially now that he is sporting a brand new hospital gown made ,with love, by Oma. I think Oma has tapped into a new, unexplored market! His little gown is complete with special velcro closures all over to accomodate his lines and tubes – so precious!
Your steadfastness in praying is an amazing blessing…thank you for your diligence and faith! I am humbled by the sacrifices made by so many on Rudy’s behalf. Thank you dear friends!!!!!!!
I’m settled back in Rudy’s room…VERY empty without the little man and his rig in here but I’ve unpacked and am catching up on some emails while I wait. Dr. Rick is on the floor this week and he just went downstairs to check on Rudy. They are about 2 hours into what could be a 6-8 hour procedure (it makes sense, now, why it took some time to pull this all together as it’s a much longer process than any of us understood it to be). Dr. Rick reported that they were unable to get to where they need to go in the first attempt so they’re going at it from the other foot and getting the catheter set so the actual test hasn’t begun yet…Rudy is sleeping comfortably and his numbers are good – so grateful he is tolerating it all so far and praying he remains stable throughout the procedure. Dr. Ryan and Nurse Jenny are with him, Drs. Robert and Rick are checking in regularly as is today’s RT and Dr. Collins and his tech are performing the procedure so Rudy is very well attended. Thank you for your continued prayers…I’ll update again later…
Well, if you have to spend Christmas in a hospital, I think the best place to be is the MATTEL Children’s Hospital. The staff and volunteers here did a wonderful job putting on a big Christmas bash for the pediatric patients and their families. Eventhough Rudy was unable to attend, the rest of us enjoyed the fun. To be honest, it has been a strange day of fun and fatigue…our dear friends Patsy and Darlene brought the kids this morning just in time to see Santa who came especially to see Rudy before his big appearance at the party. We noticed something familiar about Santa’s gait and the timbre of his voice as he spent the better part of the day walking around the units and attending two Christmas parties for patients and transplant recipients. We also found it strange that a dedicated and friendly doctor like Dan Levi wasn’t anywhere to be seen all day. Hmmmmmmm?
It was great to have the kids here as we hadn’t all been to visit Rudy together since before Thanksgiving so we’re very grateful for Patsy and Darlene making it possible. So here we were in the midst of all the festive fun but also feeling worn and fatigued. Rolf’s continued back pain and the weekend of waiting for the next, highly anticipated test that will hopefully yield some helpful information were weighing heavy on both me and Rolf today. It’s kind of hard to function in such extremes of emotion at the same time and yet I’m glad for today…
The Child Life Play Area on our floor was turned into a winter wonderland complete with festive decorations, craft tables, a Hot Wheels race ramp, and a yummy buffet. Wilson was a good sport and attended the party for a little bit before retreating to Rudy’s room with a big plate of mashed potatoes for some peace and quiet; in typical Max fashion, he enthusiastically participated in all the activities and stayed long after the rest of us followed Wilson’s lead back to Rudy’s room. The highlight of the day for Olivia (and Rolf, too, I might add…see picture below) was meeting Barbie herself – in the flesh!!! Wow! Poor Santa got a pretty cold and timid reception from Olivia but as soon as Barbie walked into the room, she was in heaven!
The highlight of the day for me and Rolf was the visitors we had trickle in throughout the day. Santa and Barbie came to visit Rudy which I know he appreciated deep down inside. Dr. Brian and his sweet family stopped by on their way in between parties and I was excited to see Baby Logan (who was discharged 2 weeks ago) and his Mommy (Rayme) and big sister Emma who came back to join in the holiday fun. A real special surprise was a visit from Cesar and his mom Maria and sister Liz. They had been to the heart transplant recipients party and we were so blessed they took the time to visit us…they were eager to hear how Rudy is doing and, as always, encouraged us so. Cesar looks FANTASTIC and is just as charming as ever.
On the Rudy front, he has continued to handle his nutrition well, so thank you for the specific prayers to that end. They have upped his feed rate one cc each day so that he is now up to 5cc per hour. He’s never gotten anywhere close to this before and tonight they are going to start to scale back the intravenous feeds so they can continue to increase the feeds to his tummy. He’s had a peaceful day otherwise, though he may have something to say about having to endure his first Christmas worth of “Rudolf” jokes.
Well, it’s just about time for the morning shift change. Nurse Marilyn is finishing up Rudy’s sponge bath and morning meds. I’m packing my bags and getting ready to head home to Santa Barbara. As always, it’s hard to tear myself away…it’s never easy to leave him just as it’s hard to leave the other children at the end of our weekends together. So I leave praying that Rudy has another calm day in my absence and continues to gain strength. I’m encouraged by the fact that he is tolerating the formula feeds to his stomach and digesting most of it! Go, Rudy, Go!!
Before I sign off for this visit I wanted to wish Rudy a Happy Birthday! 10 weeks today!!! My, oh, my with each passing week it continues to be unbelievable to me where this journey is taking us. How thankful I am for this precious boy! Stay safe, little one, Mommy and Daddy will be back on Friday!
Except for a couple of crying fits, Rudy has spent the ENTIRE day sleeping. He was pretty worn out by yesterday so I’m glad he could rest. He is still tolerating the little bit of formula he is getting through a feeding tube so they will probably start giving him a little more tomorrow. They are also (very slowly) decreasing his vent support so that will continue as long as he is stable. The doctor that does the lymphangiograms was finally contacted directly and is eager to do that for Rudy…possibly tomorrow but, most likely, Thursday. The team assures me that it is okay for us not to be here as Rudy will be accompanied by a doctor, nurse and RT for the entire test so I will go home as planned tomorrow morning. Dr. Brian feels the Pleurodesis procedure will occur possibly on Friday depending on what the lymphangiogram tells us…this will be good timing as Rolf and I will be back on Friday. So, we sit and wait for another test result praying for definitive information. Both Rolf and I are so grateful for the lengths to which the doctors here are going on Rudy’s behalf…Dr. Dan was on the phone talking with colleagues back in Boston, etc looking for answers regarding Rudy’s condition, Dr. Mary spent a good bit of her time today tracking down information about the lymphangiogram as well as alternative tests they might consider, Drs. Robert and Rick and Brian are on top of all the details and Dr. Gary, once again, stopped in this evening to check on us so we remain in great hands and everso thankful. I keep thinking over and over if Rudy is giving all the really smart people around here a hard time then Rolf and I are in for a challenge when we get him home! Ha Ha He’ll keep us on our toes for sure…
For those of you who have been following, along with us, the life story of Katie Manning you might be interested in checking out www.kissesfromkatie.org -a brand new website launched by her parents Alan and Vickie to help support children and their families in the midst of prolonged hospital stays. It’s a wonderful new organization in honor of their precious daughter. We sure appreciate the encouragement they have been to us and look forward to supporting their efforts as their work through Kisses From Katie unfolds.
Below are some pics of me, Max and Olivia from the weekend…we went to our neighbor’s house to decorate a gingerbread house. Thanks Jannele! It sure was refreshing to squeeze in some holiday fun in the midst of everything else going on!
Okay, so after my post last night, I turned on the t.v. to watch the news while I pumped one last time before bed (YES, I’m still pumping but no longer storing…just “pumpin’ and dumpin'” to keep my milk flow going). Anyway, I turned to channel 7 and whose face is filling up the screen?…Brad Pitt’s!!! They were reporting on the silly premiere and I began to laugh out loud at the ridiculousness of the whole evening. As anticipated, today is a fresh, new day and Brad Pitt is no longer on my hit list.
More importantly, Rudy is doing much better today. He is currently quite mad so Nurse Carol gave him a little “somethin’ , somethin'” to calm him down. He is so precious! His heart rate and blood pressure have stabilized with meds and they started him on the high-octane, really expensive formula feeds through his feeding tube so we’ll see how he tolerates that today. They still haven’t heard from the doc who does the lymphangiograms so I’ll have more detail on that later but the doctors at rounds this morning want to move on that sooner rather than later now that Rudy is stabilized. So, Rudy will rest in the meantime.
Depending on Rudy’s condition, my plan is to head back to SB tomorrow for a couple of Rescue Mission commitments and the school holiday program. Rolf and I will return to UCLA on Friday and spend the weekend with Rudy while the kids have fun with two dear friends back home. They’ll make a day trip to see Rudy on Saturday and attend the hosptial Christmas party for the pediatric patients and their siblings. ‘Praying for a real good day with the family here together on Saturday.
…you yell at a security guard protecting Brad Pitt and Cate Blanchett at their movie premiere!
Now, I’m a pretty patient, measured person but once in awhile I hit a wall and let it all loose like the day I took money from a homeless person when we lived in South Central L.A. and like tonight while on my way to dinner. I broke away from Rudy late for dinner tonight and though the cafeteria food at the hospital is really quite good, I felt like getting something a little different so I walked into Westwood to grab a bite at California Pizza Kitchen. I made it within less than a block of the restaurant when I was stopped by a security guard on duty at a premiere for Brad Pitt’s new movie. The problem was that the sidewalk on both sides of the street I needed to walk down was closed and yet the restaurant was just a few yards away past the barracade. Brad and Cate et al were safely stashed away in the theater watching their show and the crowds had all dispersed…what would be the harm in making my way across the barracade to the restaurant?…it would take seconds! Apparently there would have been alot of harm in it because I got a rude and abrasive rebuke followed by instructions to walk back from where I came, down a stinky, dark alley and all around a large block to come at the restaurant from the other side. Oh my, this did not sit well with me and all of a sudden I found myself in a heated discussion with a rather large man who towered over me by a foot or two. I SOOOOOOOO wanted to pull the ol’ “my infant son is in the ICU” card but after engaging with him I realized I didn’t have the energy for the fight, I told him just that and crossed the barracade anyway. There was no way after the draining day I had that I was going to inconvenience myself for a MOVIE PREMIERE!!! I sat eating my Greek Pizza seething and getting increasingly mad at Brad Pitt! Oh my, I am losing it! You’ll be happy to know that I made it back to the hospital without yelling at anybody and found the precious boy awake and alert for a few minutes. I guess we both could use a good night’s sleep. Rudy is the only CTICU patient tonight so it’s pretty quiet on our side of the unit. We’re sitting here listening to Christmas music looking forward to a fresh new start tomorrow…
Well, if I count the number of tubes/lines that were REINSERTED into Rudy today, I’d say we took 3 steps backwards! I drove back to UCLA this morning from a great weekend with the kids in SB to find a room full of folks in Rudy’s room (never a good sign). Dr. Mary (pronounced “Marie”) caught me at the door to tell me that Rudy was struggling with low blood pressure and low saturation numbers as well as needing more vent support because of a high heart rate. All the indicators were pointing toward infection again. (There are two nasty bacteria that keep recurring from around his ventilator (ET) tube) After the morning rounds, a chest x-ray AND chest ultrasound, the docs determined it was time to put the chest tube back in. As Dr. Rick described, the amount of fluid detected in the x-ray and ultrasound wouldn’t necessarily warrant the chest tube but because Rudy’s system is weakened by the infection, they need to get rid of the pressure…he just can’t breathe past it. In addition to the chest tube, they put in an arterial line (ART) to more accurately monitor his blood pressure. Then, late this afternoon, the nurse put his urine catheter back in his tollywaffer since he wasn’t urinating and they need to monitor that more closely again as well! Ugh!!! As a result, he has been sedated most of today and just now opened his eyes long enough to look at me, give me a quick “hello”, and then sacked out again. Right now he is stable…his numbers are back where they should be but it took all day to tweak everything (from vent settings to meds to blood transfusions, etc) just right…it can really be a maddening balancing act sometimes.
This chylothorax fluid continues to be a real beast!!! Last week I left with the impression that it was still just a matter of time…I talked to a couple of doctors who said they’ve seen prolonged battles with chylothorax fluid before that eventually cleared up and that was somehow comforting to me. Drs Brian and Dan, however, feel we have run out of time to wait much longer…As Dr. Dan described, the longterm cases of chylothorax fluid they’ve seen did not prevent the patient from being extubated…in Rudy’s case it is and we just can’t wait to extubate him. It’s a vicious circle…we can’t extubate until the fluid is gone and as long as Rudy is intubated he’ll battle this recurring infection weakening his system in general!!!
As I understand it, the lymphatic system collects the fluid from the venous system and takes it back to the heart through the thoracic duct. For whatever reason, the fluid in Rudy’s lymphatic system is leaking which is why they went in and ligated the duct (which normally causes it to stop leaking). For an unknown reason it didn’t stop the fluid from leaking in Rudy which means there may be another thoracic duct (HIGHLY unlikely) or an extra lymphatic vessel somewhere that is leaking. To determine where the fluid is coming from, the team is considering a LYMPHANGIOGRAM. Apparently it is pretty rare and only one doctor at UCLA does it…they are waiting to hear back from this doctor so I will know more details later. It would basically map out the lymphatic system and potentially show where the fluid is coming from exactly allowing Dr. Brian to go in and hopefully fix it. The lymphangiogram would be to the lymphatic system what Dr. Dan’s heart catheterization was to Rudy’s heart last week – a test that would hopefully give us some definitive information. The results would help Dr. Brian determine what to do next…possibly a procedure called PLEURODESIS which closes off this space between the lungs and chest cavity preventing the fluid from accumulating.
I don’t know…it’s all a bunch of crazy information that, for now, doesn’t really mean a whole lot to me…I just REALLY want a breakthrough (as does EVERYONE else around here!). I still would welcome a divine breakthrough for Rudy’s sake while at the same time bypassing the need for me to try to understand all the above information!!!!!! Well, my little man is waking up finally! I better go tell him how much I love him!!! Thank you for praying…
Rudy's Beat 