All I can say is “Phew”…today has been a physically and emotionally draining day but good just the same. At the time of my last post, Rudy was working hard to breathe on his own and Nurse Young and I spent a good bit of the day trying every trick in the book to get Rudy to calm down. Various doctors were in and out checking Rudy, his numbers and his lab results multiple times. The curious thing is that the test results and Rudy’s appearance didn’t match the numbers on the monitor…based on those, Rudy should have been purple! Instead, he was pink and beautiful. The big concerns were, as I mentioned earlier, his oxygen sats and the fact he was breathing so hard. The sats were all over the map dipping down into the low 40’s at times which isn’t good and not going higher than the low-60s which isn’t ideal. He did get a blood transfusion mid-afternoon and that seemed to help. When I left for dinner, his sats were resting comfortably in the low-70s – better!! We’re not out of the woods as Rudy’s little nose continues to flare and his tummy continues to retract with every breath but the RT did remove the ventilator from our room today which felt victorious. After a certain amount of time, the ventilator is deemed “contaminated” and they have to remove it…if Rudy needs to be intubated again, he’ll get a fresh unit. Rudy and I bellowed a hearty “goodbye” as if it’s gone for good nonetheless.
"Buh-bye!"
Rudy did need to get another OG tube put in through his mouth to his stomach today so he can get medications to his stomach and also to vent some of the air that he can’t get out. He is tolerating it well probably because he’s used to having a tube down his throat! Another tube means more tape on his face but you can still see his sweet lips!!!
This tube is a piece of cake!
We finally found a comfortable position for Rudy…draped over a pillow on his tummy! It looks pretty funny but it works!
AAAAAHHHHHHH!
So, we both end the day more relaxed than when we started it this morning.
Happy 17-weeks Rudy and Congratulations on making it to 36 hours off the vent!
Nurse Betty was so excited to see Rudy extubated that she ran out to Ralphs and got some more sparkling cider for a repeat toast during the morning shift change! If nothing else, this boy is loved!
Rudy had a decent night but I think the jury is still out this morning. Rudy is working a little harder and his morning xray looks “muddy” on the right side. Although no one is running to get the vent, quiet, careful attention is being paid to Rudy. He’s getting a RT treatment right now and they may need to get another xray so I’ll keep you posted as the day progresses. Please pray that his oxygen sats will stabilize and remain high, that his breathing will calm and his tummy will stop retracting so hard.
My shower is “out of order” today so I’m on the hunt for another shower on a different floor…the picture of me wandering around in my flannel pajamas, with my pink tub of toiletries is one I’m glad isn’t captured on “Rudy’s Beat”!
We have surpassed twelve hours and although Rudy is struggling a bit right now he has been doing great all afternoon and evening. What a day today has been!! I’m excited but guarded…the first 24-48 hours will be the true test for Rudy but Dr. Rick was very optimistic when he checked on him this afternoon. The sparkling cider glasses were raised in celebration during afternoon rounds and then again at the nurses’ shift change this evening. Rudy has had a steady stream of well wishers come to see him all day…word spreads quick around here and, as always, it’s heartwarming to see the show of support among the staff!
Celebration with the Docs during rounds!The celebration continues at shift change...
Nighty-night precious boy!
There wasn’t any talk today of the next steps…all focus is on keeping Rudy off the ventilator. Please continue to pray to that end. It has been said before but I’ll say it again…Rudy is such a fighter and, boy, we sure will have our hands full when Rudy is finally able to come home! Bring it on, little man!!
We are now at 6 hours!!! I’ll report more details later but I thought you might enjoy our day in pictures and video! Rudy is doing well, awake and comfortable…
It’s 2:20pm and Rudy continues to breathe on his own. I held him for about 90 minutes and he calmed down and dosed for a few minutes. He’s now back in his favorite bouncy chair and is calm…looking around and getting used to no longer breathing through a straw!!! His numbers look good right now…heart rate is down and oxygen sats are okay but could be higher. He doesn’t look as blue as he was earlier…so far, so good. We’re all fixated on the monitor…maddening!
Drs. Robert, (Papa) Andy, Brian, Dan, Mary, Sonal, Lee, Ryan and, of course, Rick have all been in to check on our little fighter…if he’s still off the vent at afternoon rounds, the sparkling cider shall be opened and poured in celebration!!! Thank you, thank you – please keep praying!
It’s 11:15am and Rudy has been breathing on his own since 10am. Initially he did great but he is starting to fuss and battle a high heart rate. His xray looks good but his hands and feet are starting to turn a little blue so all eyes are on Rudy right now. We need him to calm down and, hopefully, fall asleep for a bit. Please keep praying….
Dr. Rick just came in and examined Rudy and when I asked him what he was thinkin’, he replied “I think we should pull the tube”!!! He feels we have a 60-80% chance it will stay out but now’s the time to try. Oh my!!! I’m excited but bummed Rolf and the kids aren’t here. Dr. Robert was here until 12:30am (poor guy) so I don’t think he’s around for the big moment either but we’ll have nurse Gloria and RT Oscar here to cheer him on. I’m going to race down and get some breakfast and we’ll extubate later this morning. Stand by…….
It’s 11:30pm and I’m back with Rudy…Rolf got home in time to join me and the kids for dinner (I finally got that Big Mac I’ve been craving for a couple of weeks) and I left after everyone had showers and was settled down to watch a little of the X Games before bed. I enjoyed a quick, uneventful drive back to L.A. and am settling in for the week. I found Rudy comfortable and fast asleep…he just finished a second 2-hour sprint for the day and did well so he’ll rest on the vent tonight at a rate of 30 bpm and attempt 3 sprints tomorrow. ‘Praying for a peaceful night…
Finally, after several days of summer weather, we got some much-needed rain today. I enjoyed walking back from lunch in a little down pour. Rudy did well all day. He started sprinting again and tolerated two 1-hour sprints like a pro. After lunch, we settled down for a nice “rainy day” cuddle time that lasted about 3 hours during which he did a sprint, endured a straight cath for a urine sample and a RT treatment…again like a pro. The immunology folks stopped by to review Rudy’s history and begin their own records on his case as we will have a long term relationship with their department. In the future, our follow-up trips to UCLA will involve a few appointments with the various departments that will need to monitor Rudy’s condition. Immunology will be one of them and with the onset of a few infections this week, it seems now is a good time to get them on board specifically. I’m headed back to SB tonight so I can spend the day with my folks tomorrow before they leave for their home in Kansas on Saturday. I hate to leave the sweet little one but thankfully he is asleep…it’s always so much easier to leave when he is asleep. No doubt he’ll have a long string of his nurse, RT and Dr. friends dropping in to check on him tomorrow so he certainly won’t be alone…I can’t express enough how thankful Rolf and I are for the many capable and loving hands that have cared for our son and continue to express their love and care for him whether they are assigned to him or dropping by on their break! We are so blessed.
I have found that keeping busy with some sort of project in Rudy’s room keeps me from obsessing over Rudy’s numbers and “hiccups” from minute to minute. As a result, I was able to get Rudy’s birth announcements out in October…our Christmas cards in December and this month’s project has been to compile a binder of “Rudy’s Beat”. Today is our 16th week with Rudy at UCLA and I spent part of the day skimming previous entries as I arranged them in the binder…an amazing trip down memory lane in the midst of a chapter that is still being written!
Today’s page…
Rudy had a good day…like yesterday, he rested soundly for most of the day and looked real comfortable. It was a full day in that we had a number of consultations with doctors in various fields to help determine our next steps. Today’s focus was infection. After Monday’s struggle, a number of cultures were sent for testing and they came back positive for infection…so far infection was found in his urine, in his ET tube (bacteria that has been present around the tube for some time) and also in his picc line. They started antibiotics yesterday which have helped already. The challenge is addressing the bacterial infection in his picc line. Normally the choice would be to simply remove it and put another line in somewhere else. Unfortunately, the nurse practitioner who puts the lines in for Rudy has been unsuccessful in getting a line in some other place…there just isn’t any more access. There was talk of attempting to put another line in surgically but I think the plan now is to try to salvage the one he has for the time being. We are still waiting for the results of an additional test to determine if the bacterial infection is isolated in the picc line or if it’s in his blood. So, feeding is still on hold until the infections are cleared up.
Thankfully, none of this has interrupted the weaning process. Rudy started the day at 14bpm and is now down to 10bpm with a pressure support of 10!!! If he holds steady with these settings tonight, then he’ll start sprinting again tomorrow. We are so close to getting off the vent…the closest we’ve been so far, at least.
Although Rudy isn’t getting feeds to his stomach, adjustments have been made to his nutrition through the TPN he gets in his picc line…the reduction of glucose seems to have helped Rudy’s ability to breath easier already and that’s encouraging. Since the plan is to not feed him until the bacteria issue is resolved, the stomach contrast test and the insertion of the NJ tube to his intestines has been put on hold. Rudy decided he was done with his feeding tube through the nose this morning and pulled it out himself! Not a big deal since it wasn’t being used for feeds anyway but Dr. Lee replaced it with and OG (oral gastric) tube through his mouth which is currently helping to vent his stomach and get rid of all the extra air that was causing his stomach to balloon quite a bit. As a result, his stomach looks much smaller and feels much softer which must feel more comfortable to Rudy!
All in all, we’re in a good place respirtory-wise and the infections are treatable so I’m encouraged and optimistic! We had a super time cuddling this afternoon and we’ll get another chance to cuddle tonight in front of a movie…Dr. Sonal brought us “Stardust”. Happy 16-week birthday big boy!!!
Rudy's Beat 