“Just Another Manic Monday”

Today has felt like a few days wrapped into one…quite a bit going on from a fun lunch with friends in Santa Barbara to a surprise dinner party with friends in L.A. in celebration of the birthday I’m going to ignore later this week. In between it all there was sweet Rudy facing a couple of challenges. As Rolf reported earlier, Rudy’s surgery was postponed again until Wednesday. The attempt off the vent didn’t go so well so he was put back on pressure support with the plan to dial it back and wean slowly. Rolf held Rudy until I arrived around 3pm. When he was transferred back to the bed, Nurse Samantha detected right away that his groin line fell out making quite a bloody mess. Frustrating – because it’s a line into his vein that is quite necessary for administering his meds and TPN (nutrition) and Rudy is notorious for making the placement of such lines VERY difficult. Nurse Practitioner Anita and Dr. Lee worked hard at finding new access but, ultimately, Dr. Rick placed a new sub-clavian line…it’s location could be problematic in the future for his open heart surgeries but, like always, we trust the veins will remain open and clear and we’ll cross that bridge when we come to it. Rudy was cleaned up and settled by 9:30pm and I’m just know settling in myself at midnight. The plan for Rudy tomorrow is to lay low, exercise off the vent, maybe get some physical therapy and cuddle!

I remember talking with Dr. Rick many weeks ago after a particularly tough day for Rudy and as we talked over Rudy at his bedside, Rudy yawned and Dr. Rick said “a distressed baby doesn’t yawn”. Tonight, Dr. Rick and I were, once again, talking about the day’s events at the bedside when Rudy yawned a big, relaxed yawn. I chuckled and reminded Dr. Rick of his past observation and he replied “there was enough stress in the room today – Rudy didn’t need to join in”. Dr. Rick sure has a soft spot for Rudy…and vice versa. May tomorrow be a day FULL of relaxed yawns and big, full breaths. Thank you for your continued prayers…

Surgery Standby

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.

As always, we’ll keep you posted! Blessings…

The Countdown to Surgery

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…

We’re on the move on Rudy’s 20-week Birthday!

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.

We left our mark in Rudy's room...shhh, don't tell!

Rudy's new PICU room - Check out Nurse Amy!

Feb. 17, 2009

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! 🙂

Happy Valentine’s Day

Happy Valentine’s Day Everybody!!

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…

The Big Push!

Another field trip to radiology - upper GI test

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”.

2-11-09: Happy 19-Week Birthday

I couldn’t let today pass without mention of Rudy’s 19-week bday!!! We celebrate him tonight as he eagerly sucks on his “new and improved” pacifier complete with ear ties to keep it in place! 🙂 He has promised more than one nurse to be their Valentine so I imagine he’ll get alot of attention in the next couple of days with visits from nurse-friends during break time. So thankful to God for his precious little life so far! Happy Birthday Rudy!

Gastric Emptying Test

Rudy, Nurse Kelly and I had an early morning field trip down and over to nuclear radiology today for a “gastric emptying test”. RT Oscar and Fellow Julianne helped in the transport to a whole other building in the medical plaza through a basement corridor – quite an adventure. The test involved the tech putting 30 ccs of formula laced with a tracer into Rudy’s stomach through an NG tube in his nose. Then they put him under a scanner for 90 minutes and every 15 minutes they took a minute-long picture of his stomach to see if the stomach was emptying normally. The challenge was to keep him still as he didn’t get his morning pain meds in preparation for the test so I stood next to him holding his pacifier in place and stroking his hand the whole time…so sweet! The preliminary results indicate that Rudy’s stomach does have a delay in emptying. This is not a huge surprise but the question now is “why?” and “is this a permanent condition or just another one of Rudy’s systems that is slow to kick in?”. The next step is to do an Upper GI contrast test which is scheduled for tomorrow. It’s similar in that they’ll put formula mixed with contrast down his throat and watch it’s journey to the stomach via fluoroscopy looking for any obstruction. So, the information gathered from both tests will help determine the next step…most likely a GJ feeding tube that goes directly into the intestine through his side.

Like the trach, this is another treatment option explained to us a while back that we hoped Rudy’s journey wouldn’t come to but it looks like that may be where we are headed. From what I understand, a modified nursing schedule in conjunction with the feeding tube may still be an option if Rudy can learn to latch on so I’m praying to that end. This is a really full week for Rudy…an aggressive push to make some progress which is good but it’s also generating a ton of information to process. Not that we have many options but please pray for clarity of mind for me and Rolf as we digest each nugget of information comin’ our way…no pun intended! Please pray for Rudy’s comfort this week as well as he is being messed with a great deal while trying to heal from the tracheoscopy. Such a sweetie-pie!

gastric emptying test - getting preped — gastric emptying test - getting prepped

He’s Awake

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‘Just a couple more “trach day” pics of the precious one awake and comfortable. He woke up for a little bit but fell back asleep after his afternoon pain meds. 🙂

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