It has been a challenging day getting Rudy’s blood pressure stable after the morning attempt at re-inserting the left chest tube. He is calm and alert this afternoon and the team has decided not to make another attempt at the chest tube today. They’ll take another chest x-ray in the morning and see. The good news is that Rudy’s breathing has remained strong throughout the day. There hasn’t been a need to up the bpm’s on the ventilator and he is holding steady at 14 bpm. So we continue to wait, wait, wait. To break up the monotony, we had a little Halloween fun as you can see. The pediatric patients on the floor had a costume parade earlier today which Rolf and I attended since Rudy was asleep anyway…it was very sweet and they all had a fun time but it was also heart-wrenching to see the kids parade around with their rolling IV towers, etc… I couldn’t help but think about Wilson (aka Davy Crockett), Max (aka Jack Sparrow) and Olivia (aka a cowgirl) who are, most likely at this moment, getting dressed for their night of candy collecting!! Have fun little ones! We’re looking forward to a family visit tomorrow!!
Having learned the lesson Charlie Brown never could (that Lucy was never going to let him kick the football), we try not to get our hopes up every morning that this will be the one where the breathing tube is pulled. Probably wise, because this morning they decided to sedate Rudy so they could re-install the drain line that came out last night. Unfortunately they weren’t able to get it in, so they’ll probably have another go at it this afternoon. So it’ll be another day of seeing if Rudy can hold the line. His numbers have been good and they didn’t need to scale back the ventilator this time and it’s holding at 16 bpm. While it’s a bit disappointing to have the progress slowed for another day, it’s certainly better than holding off only to have him go into distress over the weekend and lose several.
Just this evening as we were sitting here, nurse Cheryl discovered the drain tube on the other side fell out. My first response was to get disheartened as it could mean that tomorrow would be a repeat of today where we needed to knock Rudy out for another procedure so that they could re-install it, but the docs have some reason to believe that may not be the case.
When they originally put the drains in, Rudy was swollen up like the Michelin Man, but as fluid drained, the skin around them became looser to where they often lose hold and fall out. Right when it came out, Dr. Abel called for an Xray so he could look for an air pocket as this could lead to his lung collapsing. Fortunately, they didn’t any sign of this. As it was, the doctors were discussing whether to pull that drain today or tomorrow (to prevent infection I think), so please pray that no further fluid amasses and that the medicine they started tonight to stop the fluid from secreting would act quickly.
I heard from a few subscribers today about no update going out last night. Sorry about that–we didn’t get the post up before the automated send deadline. Thanks for your dedicated reading. I noticed today on our stats site that Rudy’s Beat crossed over 25,000 hits today. Wow, that’s amazing! The support and interest in our little warrior is overwhelming.
We had decided not to mention the possibility of extubating Rudy this morning as I’m not sure how many nights we’ve left with that being the plan only to have a change in course overnight. Unfortunately, that was the case again. Rudy had a great day yesterday–alert with consistent numbers where they all should be–so they were going to steadily dial down the vent overnight to see if they could get to 8 bpm by 6am. A routine chest Xray at 4am (if there is anything routine about an Xray at 4am) showed a plural effusion on his right side–fluid on his lungs. The drain on that side had fallen out yesterday and the team decided not to replace it, but took the course of monitoring things closely.
The good news is that the accumlating fluid was detected quickly before other signs of distress kicked in. The ventilator was bumped back up and he underwent a procedure this morning to install a new drain (more generic bears again). All of the numbers have held fairly well during the day, so the main issues we had to overcome were the sedation that knocked him out most of the day and the always closely-monitored flow of urine. We’re still waiting for the latter to come back where it needs to be to let us know his kidneys are OK, but we’re glad that Rudy woke up and joined us again about an hour ago–the good kind of awake, where he can focus and looks at me with quiet, patient but questioning eyes. We can drive ourselves crazy if we focus too much on getting that horrible tube out of his mouth. Tomorrow!? Tomorrow!? Tomorrow!? Dr. Harrison came on today and like everyone else, he’s optimistic but wisely non-committal as to a timeline. I was able to extract a promise from him that it’ll certainly be out by Rudy’s first day of kindergarten.
We’ve noticed a respectful debate emerging between the Cardiology and the ICU docs regarding Rudy and the ventilator. The former would want a quicker wean while the latter argue for a more gradual process (Note–if Reemtsen ever teaches swimming lessons, verify that his pool has a shallow end before you sign up your kids). I am grateful that multiple minds, each holding their own perspectives, are involved in this key discussion.
UPDATE–THIS JUST IN!!! As I’ve been typing Dr. Mary (pronounced as the French–“Marie”) came in and discovered 10ml in the pee tube. Yahoo! She also reported that Dr. Harrison feels that Rudy is far enough out of the woods on any intestinal issues that they can start some powerful medication for his chylothorax (the liquid that keeps collecting on his chest). This will hopefully stop the fluid from collecting over the next few days so we can get rid of the drains and reduce the risk of infection from them.
We said goodbye to Robin and “Papa”, her baby boy, today. They arrived just a few days after us from Lompoc and were part of our temporary community that formed here over the last month in the ICU. We feel a bit like year-round residents in a resort community of some kind. The neighbors come and go every few days, but we’re still here. We wave to them from the front porch as they drive away. Blessings, peace and health to you, Robin and Papa!
Today is Wednesday October 29th and Rudy was born 4 weeks ago. Quite a milestone in our little world that is so centrally focused and limited by the boundaries of the 4 walls around us. Rudy’s condition hasn’t changed much today which is a good thing. When Rolf and I arrived this morning, he was awake and annoyed! It was clear he wasn’t happy but it wasn’t distressing for us because it was also clear that he was alert and aware and had alot of fight in him. His blood pressure was high but all his other numbers were good and by mid-day he had settled down and seemed much more comfortable. The team allowed him continued rest today and didn’t schedule any sprints off the ventilator but they have gradually slowed down the ventilator rate and he is currently getting 12 bpm which is much lower than the 30 bpm he was getting earlier yesterday. At this point, everyone on the medical team is iching to get Rudy off the ventilator and there is risk no matter what course of action is taken…so we are praying for wisdom in that decision and God’s life-sustaining support when the tube is finally removed so the little guy doesn’t have to be re-intubated.
It seems I’m the one who got a gift on Rudy’s one month birthday. This afternoon Rudy’s nurse asked if I could help her change Rudy’s bed sheets. I jumped out of my chair so quick realizing that I haven’t been able to do ANY practical chores for Rudy and I was thrilled. At first the nurse had me scoop him up mattress and all as she replaced a sheet that was positioned underneath his little mattress. But then she very carefully lifted up his body making sure none of his lines were pulled too tight and said “okay, if you could just hold him like this while I pull his mattress out…”! I was taken aback because I didn’t expect I’d get to actually hold him! For the first time, I was able to hold him skin to skin during the time it took the nurse to pull his mattress pad out, replace the soiled sheet with a fresh one and slide it back underneath. Granted, it wasn’t a “hold to your chest and cuddle” kind of moment, but it was exciting just the same!
After the bedding change, the nurse worked hard to reposition Rudy comfortably and ended up propping his leg up on one of his stuffed animals and I laughed because he looked just like Rolf in one of his favorite lounging positions!!! (see picture below)
So, all in all, today was a good day. After sleeping a good bit of the day today, we wish Rudy continued deep sleep and a peaceful night tonight. We wish you a good night’s sleep too! 🙂
As Trish posted earlier today, Rudy settled down nicely today and has spent most of the day sleeping peacefully. After the commotion yesterday with alarms going off every ten minutes for breathing, blood pressure, O2 and CO2 levels, today has been very calm and quiet. While he is being treated for infection, there are fewer indicators that this is a major issue. There are so many factors playing into his condition that isolating one cause is usually unrealistic, but one of the key items might have been decreasing a steroid medication too quickly. Now that it’s been restarted along with some other adjustments to his medication, he’s got all the numbers in the right ranges–in a deep sleep no less which means he doesn’t have to work at it.
Again, conversations with the doctors–Andy, Abel, Brian, and Ryan–have been very assuring and we were especlally encouraged by Gary Satou stopping by for a sit-down check in just to see how we were doing. One of our nurses from last week, Denise, stopped by for a comforting chat on her break and ended up cleaning Rudy’s mouth since she couldn’t stand all the gunk from the tape on his lips. He immediately gnawed on the sponge she was using so I think he’s hankering for some chow–enough with these intravenous feeds. Right now peaceful sleep is a good thing (and we hope to get some of our own tonight) as it’s helping him summon strength. There are some decisions to be made about how to proceed with the ventilator, but we’ll see what tomorrow brings.
It’s Tuesday at noon and we’re sitting with Rudy waiting for various test results to come back. The blood cultures take a bit of time so we don’t quite know what we’re dealing with yet in regards to infection, etc. but Rudy does seem to be more comfortable today which is always a relief. Last night was troubling for me on many levels but I was fixated on the fact that his eyes were open but they were unable to focus on or track any movement…they just slowly swirled around “looking for something” as he struggled with his breathing- probably due to various medications but it was hard to watch nonetheless. It was clear he was tired but he just couldn’t go to sleep. Funny, Mommy and Daddy had the same problem!
What’s amazing AND maddening is how quickly his condition can change. Earlier in the day yesterday, he was alert, bright-eyed and seemingly close to getting extubated.
By the evening, he was battling a fever, struggling for a breath and just not “with us”. I tossed and turned throughout the night wondering if we’re still within the expected range of “ups and downs” the doctors warned us about. After a talk with the doctor this morning, I think the answer is yes. Rudy tried a sprint this morning and lasted 30 minutes so they stopped the exercise and have decided to let him rest – no more sprints for today. But they have made some adjustments on his medications as this may have contributed to yesterday’s challenges.
My prayer this morning was that we’d have a day to simply love on Rudy with our presence and our kisses without the constant distraction of monitor alarms going off and procedures for which we need to leave the room and so far that’s the kind of day we’re having.
It is so clear that Rudy is well-loved by all the artwork that is lining the walls of his room from cousins, friends and siblings…especially Olivia. This week’s masterpiece from Livy says it all “Rudy is the wun i love”. How blessed this little man is! Rolf and I are doing our best to communicate everyone’s love and best wishes to him as we hover over him, talk, and stroke his head all the while trying not to stimulate him too much. We continue to walk along with Rudy this very fine balancing act. Thank you for supporting us in the walk.
It’s Monday just after 9pm and we’re trying to come to terms with a couple setbacks. While the day started out with the potentiality of Rudy coming off the ventilator by this evening we’re back to an indefinite timeline. Early on, the team decided not to rush things and wanted to see what another day of sprints would do. Rudy made it through the first one fine, but didn’t seem to recover well. Only 30 minutes into his second sprint, his O2 saturation was dropping too low and CO2 was getting higher. These remained out of bounds after they put him back on the ventilator and his blood pressure was consistently low and different measures weren’t taking much effect. We’re coming to learn that the number of people in the room and the frequency with which they come and go is an indicator that they are watching something closely. One has to fight the temptation to bombard them with too many questions as they work to get an understanding of what’s going on.
Just before dinner, Dr. Abel told us that they suspect they are dealing with another infection. Their worst fear is that it’s in the blood which would mean a 3 week course of antibiotics and certainly more delay in the weaning off the ventilator. We spent some time wondering if this was “two steps up and three back” or “three up and two back” but either way it’s a setback and that just plain sucks (sorry, short on eloquence at the moment). Physically, Rudy looks much better than he did during last Monday’s episode. He’s been wide away all day, which could be because he’s working so hard to get oxygen. Thankfully, he hasn’t been having any of the silent tantrums–I can only stand so many of those. But his eyes jump about quite a bit which can be read as panic, but that might just be our frame of mind at the moment.
So tonight we pray for peace. For Rudy, that he would be calm and be able to sleep a deep unpanicked sleep; that he would be protected from infection and that all the numbers on the gauges would stay where they should be. For us, we ask for that same peace as we deal with so many things we can’t control–from Rudy’s condition to the indefinite timeframe this journey has for our family.
Today has been a quiet morning here with me and Rudy. He’s made continued steady progress, but yesterday’s talk of trying to take him off the ventilator today is not being discussed today. There is unanimity among the doctors that we want to get him off the respirator, but some differing viewpoints on the rate. As much as we want those tubes out of him so we can hold him and let him holler, it would be demoralizing to take them out too early and then have to re-intubate. This morning, he went on a good two-hour sprint and now they have dialed down the resting rate significantly so that he has to work a bit more—at first his O2 saturation wasn’t coming up high enough, but he seems to getting a good rhythm and isn’t setting off too many alarms. There are still some lingering signs of infection, so they are going to switch antibiotics and perhaps try to start a new catheter line today as the subclavian line might be a source. They have also backed down the Fentanyl he was receiving for pain and sedation so he’s a bit more active and not sure how much he likes that.
Since last night our friends, the Mannings, have been on our hearts as they are at a very difficult place with Katie’s HLHS treatment (click here). It serves to remind me of what a delicate process we’re on. It has often occurred to me in writing that I pray there will be a happy ending to our story, but that’s not guaranteed. Alan and Vickie have demonstrated to us that, in the midst of so many uncertainties, there are places for laughter, celebration and optimism just as there are places of concern, frustration and brutal realism. It’s hard to express the way this journey pitches one back between incredible highs and troublesome lows; often asking us to embrace both at the same time. Our prayers are with you, Alan and Vickie!