The ventilator totally blows–literally and figuratively.There have been some bumps over the last couple of days some of which led to Rudy getting put back on the vent late this afternoon.This morning began with a likely unrelated concern over his kidneys as some of the blood pressure and antibiotic meds impeded their function.Late yesterday, the team started him on Lasix and his renal function has steadily been returning. We’ve learned his kidneys are hearty and resilient and they’re proving to live up to their reputation once again.
The team has naturally been watching his breathing very closely and grew increasingly concerned with the way his right lung looked on Xray.They did an ultrasound which ruled out a return of the dreaded chylothorax, but that made it clear that there was an accumulation of mucus in his right lung.Over several hours, they noticed he wasn’t able to cough much (which would clear the lungs) and appeared only able to derive benefit from one lung (which caused his oxygen saturation to fall lower than acceptable.)While we could have waited things out longer, Dr. Robert felt it best to address the situation now rather than face a distress scenario later on.
Putting Rudy back on the vent allows the team to expand the lungs fully and effectively suction out the lung.His time back on the vent could be relatively brief (we’ve come to expect this to mean a few days) so please pray to that end—that Rudy would have a good rest and that the treatments would help the lungs expand and function properly. It’s tough to see Rudy have to be re-intubated after such a long stretch off the ventilator, but we have gained the knowledge from this week that Rudy can breathe on his own—there are no physiological issues limiting his lung function.While here waiting for the relatively brief intubation procedure to be done, I just got a call from the unit that Dr. Robert decided to place an arterial line in Rudy so they could get accurate readings on blood pressure and saturation levels. As it’s getting to be 6:30, it looks like I’m going to have another one of those pre-occupied dinners.
So the burden of waiting patiently is still ours.I’ve wondered some about what it must be like for Rudy—to lie there patiently during the early months of life when babies are probably held more than not.Holding him at any time is great, but there’s a rigidness about him when he’s intubated that greatly diminishes the cuddling one can do.Fortunately, it took one of the necessary people for the re-intubation a while to get to the unit after they paged him, so I took the time to pick up Rudy once more and stood there holding him up against my chest for half an hour.His little hands clenched onto my shirt and I felt his breath against my chest as his lungs worked back and forth.I kissed his head and prayed that God would somehow extend the impact longer than the actual act.I want him to know that this is what it means to be with Mommy and Daddy.We’re not just two faces that come into focus more often than the others around the bedside.I want him to feel the vibration of my voice from having his head against my chest instead of just hearing my words coming through the white noise of the ventilator.It hurt to put him down, but my prayer as I did was that the feelings of being close to us this week would summon the instinct to fight his way quickly back for more.
Just to remind us all that this is temporary, here’s a couple of pictures and a video from the special moments these last few days. We’ll look forward to many more!
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.
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.
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!!!
We finally found a comfortable position for Rudy…draped over a pillow on his tummy! It looks pretty funny but it works!
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!
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!!
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…