Not much to report today (I guess that’s a good thing), but I’ll give a quick status.
We had a fun evening together with the older kids enjoying some fine entertainment at the La Patera Elementary School Talent Show. Fun to see and be seen! This morning, Livy and I made the trip down to relieve Oma at Rudy’s bedside. Livy had raised a protest over the fact that she hasn’t had the opportunity to come down to see Rudy and spend the night, so this is her chance. She’s spending as much time in the room as outside of it as there’s now a new group of nurses to charm here on the PICU side in addition to keeping up with her CTICU friends on the other side.
Rudy has had some struggles today. The fussiness and the occasional fever spike have come to mark the onset of an infection, so that’s being monitored carefully and we’ll wait to see what the cultures bring back. He did calm down by mid-afternoon and has had a few hours of comfortable rest.
We’ve been in contact with the GI surgical team and they are trying to arrange the surgical calendar. While everyone would like to get Rudy on the calendar for Monday, there are some emergency cases that might take precedence. Of course, if an infection is discovered that might make the choice for us. So, another thing to wait on. We’ll let you know when we hear something.
Well, dear friends, thank you for your prayers this morning for Rudy’s surgery scheduled for this afternoon…we just got word that his surgery has been cancelled. Thankfully not because of Rudy’s condition (he has been quite stable today) but because an emergency case came in that they need to tend to first!!! This is unfortunate and we’re disappointed to have a delay in moving forward but in light of how far we’ve come, we can wait a few days. The prayer now shifts to Rudy staying stable in preparation for the surgery either next Monday or Wednesday. In the past, our windows of opportunity with Rudy have been somewhat small before the next infection, etc… We trust this is no longer the case with him and he’ll enjoy a lazy, crisis-free weekend with Dad and Olivia.
Today was a “get ready for surgery day”…very low key with alot of sleeping on Rudy’s part. He was quite stable all day with oxygen sats in the high70s to low 90s, decent heart rate and blood pressure. He was cranky when he was awake but, thankfully, I was able to calm him down without the use of meds. He had nice long stretches of sleep in between IPV treatments every three hours. He slept in my lap for a couple of hours this evening and that’s always a highlight. His xray looked great today…lungs nice and open so he’s all ready for his stomach surgery tomorrow. He’s number 3 on the list so he’ll most likely head to the OR in the afternoon. I have to leave mid-day to get home in time for the kids’ talent show at school (all three are participating) but Oma will come and sit with Rudy upon his return from the OR. The mood surrounding Rudy is optimistic…everyone feels that once he starts getting feeds to his gut that he’ll start to fly! He’ll have the weekend to recover and then they’ll try feeds on Monday. Big steps ahead…
Speaking of big steps, Rudy hasn’t vocalized much since the video I posted back on January 27th. While we were waiting for transport to our new room yesterday, Rudy had a bit of meltdown and it was the first time nurses Filma and Denise heard him cry. Of course, we had to get it on video (see below). It’s a soft cry because he is trached but the fact that he can vocalize around the trach is so fun. Also, check out the sucking action of our sleeping hero! This is good stuff…
Okay, there are those days here at UCLA that just don’t stop and today was one of them. It started out like every other day. I woke up, folded my bed linens and put them away, pumped, wandered out to the hallway shower and got showered/dressed and ate breakfast. I made it back to Rudy’s room in time to listen to the morning round report and then settled down to hang out with Rudy and do some suctioning. As it turned out, there wasn’t much “hang out” time with Rudy. The ventilator got rolled back in…the team reported during rounds that the xray of Rudy’s right lung was starting to look hazy again and head toward collapsing. As a result, they put Rudy back on the ventilator to keep things open and prevent the lungs from collapsing before his surgery on Friday. He didn’t like it at first (he feels the pressure in his lungs) but he was calm by the time I left him for dinner. Thankfully, it doesn’t feel like a setback but the big bummer is that because of an air leak around Rudy’s trach, the vent doesn’t always detect his breaths and as a result, the obnoxious alarm goes off almost continuously. I’ve threatened to shoot the darn thing with a shot gun in the past and Nurse Filma was just about ready to join me in my crusade after just a few minutes! Ha Ha
The team also mentioned during rounds that Rudy would be moved to the PICU tomorrow…something Dr. Rick talked to me about last week. Because the issues keeping Rudy in the hospital are no longer “cardiac”, he no longer needs to be in the Cardio-Thoracic ICU and a move to the general Pediatric ICU would be the next step…one step closer to home! Well, I enjoyed a good lunch with some great friends and when we returned, the room was half packed up and Rudy was ready for transport! As often happens in the ICU, things move unexpectedly – figuratively and literally…a bed opened up in the PICU and, bam!, off we went. I was a little embarrassed packing up all the stuff we’ve accumulatedly in 20 weeks…it took me 5 or 6 trips to get everything moved but the good news is we only had to move six doors down to a room in the same unit aaaaaaaaand, hold on to your socks, it’s a room with a private bathroom!!! Yep, a sink, a toilet AND a bath tub and shower!!! Happy, happy day. Like in most of the major events that have happened in his lifetime so far, Rudy slept through it all but I spent the afternoon rearranging everything and we’re nice and settled this evening. We’re going to miss our CT nurses desperately but we look forward to meeting a whole new pool of PICU nurses and we’re thankful that we can wave to our CT friends with only an administrative desk dividing us.
My mind is spinning tonight…alot to process and learn (the PICU has different rules and procedures) and there are a TON of details swirling around in my head that I’ve got to try to get on paper. So, I’ll sign off for tonight but will give a more medical update on Rudy tomorrow.
Today was non-stop. Eventhough we still don’t have a definitive timeline, preparations for Rudy’s discharge have already begun as there is alot to learn and organize in the next few weeks. We were given a book of information today entitled “Hospital to Home: Your Child’s Tracheostomy” which I began to read this afternoon. I also got my first trach-suction lesson from nurse Filma and practiced on the “trach dummy” she and nurse Sara made for us…see pic below! ha ha I was all prepared to suction Rudy when the surgical team arrived to remove the trach sutures and replace the trach tube for the first time. I’ll try again tomorrow. I met with various doctors and had a quick visit with Nurse Gwee who will be our case manager and help us get situated at home with the right equipment and help when the time comes. So, all in all, things are coming together…
The big topic of discussion today was Rudy’s stomach and feeds. I met briefly with Dr. Dunn and his team to confirm the plan for Rudy’s next (and hopefully LAST) surgery for this hospital stay. The surgery is scheduled for early Friday to be performed by Dr. Daniel DeUgarte. It will be an open surgical procedure for three purposes…to do a Nissen funduplication, a pyloroplasty and to insert a G-tube into the stomach. The first two treatments will, hopefully, address Rudy’s stomach issues in the long term and the G-tube placement will allow feeds to start asap so we can get him off the TPN. We certainly hope this will help our little guy conquer the last major hurdle preventing him from going home. Oh, by the way, did I mention Rudy hasn’t used the ventilator since Saturday??? In fact, they wheeled it out of his room again late last night. Everyone is very encouraged by how relaxed he looks breathing on his own. The tube attached to his trach at this point is a trach cuff that humidifies the air he breathes. He’s quite “gunky” so he needs to be suctioned often but he is also coughing quite a bit which is good. He’s making progress and we’ll take it! Thank you, thank you for your prayers…especially in preparation for Friday’s surgery! For now, though, it’s time once again to go to bed…Rudy has found a comfortable position and is fast asleep…like his Mama, he likes to sleep on his side! 🙂
Actually forget about TV, I’ve seen a lot more doctors in person. The steps taken by the team this week made for a markedly different weekend with Rudy. The tracheostomy has helped Rudy with breathing on his own. As I mentioned in Saturday’s post, the team was going to give Rudy a couple of stints off the vent for two hours to see how he did. He did so well on the first two and actually got pretty agitated when we put him back on the vent (Oscar says that patients sometimes don’t like the feeling of pressure from the machine if they’ve gotten comfortable without it). So, we added a third on Saturday evening and since he wasn’t exhibiting any discomfort when I had to retire for the evening, they just decided to let him stay off. The team attempted to put him back on the vent in the early morning hours and he again expressed his displeasure, so they just decided to leave him off. And he’s been breathing on his own ever since. Go Rudy!
Even though we aren’t at the point of crafting a timeline for going home, during Sunday morning rounds, Dr. Rick said he wants us to start our education in what Rudy will need when he’s at home. Again, no specific dates are in sight, but it would be unfortunate to have any delays because of our training. So, it started yesterday with Nurses Jennifer and Gloria training me in how to suction out the trach. It’s not that hard and I must be doing it right because Rudy hates it just as much as when the professionals do it. It might make one a bit queasy, but largely because it’s unfamiliar. If Trish wants to do all the diapers, I’ll do all the suctioning.
We enjoyed the Monday holiday together with our other kids–simply being able to stay in bed while rain drummed on the roof was a great start. Trish is headed back to UCLA as I write this and the kids and I will enjoy some yummy chili tonight’s food fairy brought to our porch (thanks!) before getting ready for the week. We’ll be interested to hear the plan for Rudy’s stomache when the full team rounds in the morning.
After the week Rudy had, I was eager to get back to UCLA to see him. We’ve written before how it’s usually much harder to be the parent in Santa Barbara than at the hospital when significant procedures are going down, so there were several people who encountered me this week who made mention of the fact that I appeared distracted. There’s no denying that a trach takes some getting used to, but when viewed in terms of all the other things Rudy’s had sticking out of him, it can be taken in stride. It is neat to see his face with only the small tape holding the NG tube in place instead of the vent wrap. Without the hoses coming out of his mouth, he can move around quite a bit more, so we’ve enjoyed making eye contact and having fun today. He sat on my lap for about four hours this afternoon and things were calm enough to the point where we wondered aloud how Stanford could blow a 20-point lead and lose to Cal–ugh.
Rudy had two stretches off the vent today totaling close to five hours. He does this with a small oxygen hose pumping some vapor around the hole as his breath doesn’t get the normal humidity we get from breathing through our upper airways, where saliva creates humidity. (Betcha didn’t know that–who needs the Discovery Channel when you have Rudy’s Beat?) He got really mad at RT Oscar when he came to put him back on the vent, so I think he’s ready for more.
We did have a consult from Dr. Dunn, the Pediatric Surgeon who is going to be addressing Rudy’s stomache issues. I’ve spent much time educating myself on cardiac and respiratory issues, but I don’t know yet how to speak Gastro-Intestinal, so that’s tonight’s internet lesson. The imagery reports we got yesterday indicated that Rudy’s stomache is a bit more horizontal than normal and also has some reflux issues, but there was comfort in Dr. Dunn’s assessment that these were common issues for cardiac babies. A number of big words were introduced to me which Nurse Amy has been kind enough to repeat several times so I know where to start my education. It’s looking like Rudy will have surgery on Wednesday where some of this might be addressed and a GJ tube placed–the team will confer on the appropriate game plan in the meantime.
Many procedures have been attempted on Rudy, but today Nurse Amy attempted the most daunting yet. She came back from her lunch break with hair product and great intentions to try to tame his mane. It worked quite well for a bit but I don’t think they’ve created a substance with holding power sufficient to keep things in check. A couple hours later he looked like Heat Miser again. But Amy should be applauded, because somewhere in the middle of all the primping, Rudy did seem pleased and I was able to snap a picture we’ve been waiting quite some time for:
Though we see only the highest professionalism in the CTICU, given that our son’s care is in their hands we do our best not to upset them. In light of this, we have corrected a previous post that spoke of RT Oscar e-mailing us pictures of Rudy breathing. It was in fact Nurse Denise, who might have been less offended by the omission than by the assumption that someone of her generation would not be able to master such technology. We are so sorry. Thank you for your thoughtfulness, Nurse Denise. I’ll call you the next time I have a problem with my computer.
While we’re appreciating our Nurse friends, we have adopted a practice of decorating Rudy’s room for the holidays we’ve spent here at UCLA. Knowing Trish, Valentine’s Day would not have been an exception, save for the fact that we entered at the start of the week to find it already adorned with streamers of hearts and red garland. We’ve since determined that Nurse Kelly was the elf responsible. Thanks, Kelly! Rudy loves his room!
Rolf has more of a medical update coming later today but I just wanted to send you a quick love note from our family to you!
I woke up to a wonderful Valentine’s breakfast of scrambled eggs and orange juice prepared by Max and Olivia and just finished a lovely grilled cheese sandwich lunch prepared by Wilson. I’m getting spoiled here at home and we are soon off to Max’s basketball game. We’re all missing our other two Valentines in L.A. but it sounds like they are having a nice, relaxed day together. More soon…
40 more minutes and it will be Friday! We made it to the end of a long, full week. It’s clear this week was a turning point in Rudy’s recovery. I’m not sure Rudy’s condition has changed much but how his condition is being managed has changed dramatically. The tracheostomy performed on Tuesday allows the team many more options in getting Rudy off the vent with little discomfort for him unlike the trauma of extubating and intubating him over and over. Rudy is definitely more comfortable with the trach and now that the focus is off extubating him, the team has been able to tackle the feeding issue pretty aggressively. Yesterday’s gastric emptying test and today’s upper GI contrast test confirmed that there is a delay in Rudy’s digestive system which means the best way to get feeds to his gut at this point is through a GJ tube that goes through his side and directly into his intestines. The team is hoping the surgical procedure to place the tube will happen early next week as everyone is eager to start his feeds. A MRI was also conducted today to look for any possible reasons for the fevers he has been getting which have compromised his recovery in general.
The big push to see Rudy past all his major hurdles is, ultimately, to get him home. The felt need to get him home is growing increasingly urgent as we get closer to the Glenn (Rudy’s second open heart surgery). I agree that we need to get Rudy home and I see that the steps we’ve taken this week are positive ones for him but the steps taken this week also require a huge mental adjustment in what I expected bringing Rudy home would look like. I envisioned our elevator ride with a baby free of restraints and restrictions…not trach, and possibly vent, dependent with a feeding tube. As much as I want to take Rudy home, I admit that tonight I’m overwhelmed and feeling alone. Pushing to get him home does come at a cost…the burden of his care and recovery will fall on us at home to a greater extent than I expected and that’s intimidating. Now, none of this comes as a complete surprise as these treatment options were explained to us many weeks ago as “possibilities down the road” but, of course, I hoped and prayed we wouldn’t get to this point. I feel like I’ve been naively running this marathon for four and a half months thinking that the day we bring Rudy home will be our finish line only to find out this week that this has just been the warm up…the marathon hasn’t even begun!!! Oh, I know, we’ll rise to the occasion, we’ll learn all we need to know to take care of his special needs, it won’t be like this forever, our family will adjust to the things that make Rudy special, Rudy WILL one day talk and eat In n’ Out Burgers with his siblings and someday I may even take a trip to Hawaii and do nothing but lay on the beach for a week, but being confident of all this doesn’t make me feel any better tonight for some reason. I’m tired and weepy and sad and really fighting the urge to indulge in some major retail therapy.
Enough about me and my pity party…the good news is that they started to turn Rudy’s vent settings down today, had him on an one hour sprint this evening while he slept comfortably in my arms and he has been breathing on his own off the vent completely for the past hour. He’s doing great at the end of a full day with two field trips!!! He’s pretty excited to show off for Daddy tomorrow. I guess it’s time to head to bed and get some rest…”afterall”, as Scarlet O’Hara would say, ” tomorrow is another day”.