He’ll be off the ventilator by Kindergarten…

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!

Rudy the Weekend Warrior

We were relieved to hear back from the lab today that the fluid around the heart was not the bad kind so there’s no need for a surgery to correct this. Hopefully just a bit more time on the drain will do the trick. This is a drain they don’t want to keep in too long so we’re praying it will do it’s work. I believe we wrote last week about the interruption in Rudy’s thyroid function. Dr. Reemtsen feels like these kinds of things could be a result of that as the body and its systems just aren’t as vigorous.

In case you’re concerned, Rudy has not been a couch potato this weekend. He’s out there getting lots of exercise. Today, it’s been three 90-minute sprints off the ventilator and he’s done beautifully–in fact, he was asleep for two of them (show off!). Tomorrow they’re going to go for two hours at a time. Go, Rudy, Go!

After being away from him for a few days, I’ve noticed a few changes. His face does look fuller and when he’s awake, he’s very, very alert. Please pray this trend would continue. While anything can change, at this rate we might be looking at extubating him from the ventilator on Monday or Tuesday.

I had a good few days in Santa Barbara, being with the kids and seeing those I could around the mission. I got to see Max score a touchdown at his flag football game, listen to Wilson drum, and take Livy back and forth to school. Yesterday we went out for a bike ride on Ellwood Mesa at sunset and it was INCREDIBLE. One of those clear evenings where you can see out to the islands over a still ocean. I think I’d enjoy it on just about any day, but given the hospital cocoon we’ve been living in for the last three weeks, it struck me as even more beautiful. Today, Livy and I made the drive down to LA as the boys were looking forward to playing at friends houses and were glad not to have to make the round trip. Trish will probably take Livy back tomorrow and spend a day or two at home herself (kids–if you’re reading this–clean your rooms!!!)

Hope you’re having a good weekend!

Rudy’s Day of Rest

Today is one of those gorgeous days in LA—in the 70s with a refreshing autumn wind. I had to leave the hospital as I suddenly realized I was driving in an uninsured vehicle. I bought a new truck, sold the old one and was in process of doing all the transfers when Rudy decided to come. It just struck me last night that I never bothered to inform my insurance company of this, so this afternoon, once I remembered where I parked, I had to go back and retrieve the registration to give my agent everything she needed. This rather mundane chore gave me a chance to be outside the hospital during daylight for a bit and it was so nice I took a long way back through campus and the botanical garden just to enjoy it for a bit.

Back here in the room, things are peaceful. While Rudy has flown through several of the milestones to date, his progress seems to have slowed a bit today. Yesterday there was talk of removing his breathing tube, but today’s chest X-ray showed a significant amount of fluid in his lungs and around his midsection so they’d like to see that drain. This isn’t really a setback just a matter of a bit more time. He’s sleeping a lot today and even though it’s been quite a week, looking at him we’re reminded that he is still in a very delicate state. Even though we’ve gotten used to being in this place, it’s still the intensive care unit and the patients are by definition in very acute situations. Please keep praying for fluid to leave his body (feel free to use the terminology you think God would find most appropriate, but basically he needs to keep peeing).

He’s completely off the paralytics now, so while he might still look motionless to most eyes, as we’ve been closely focused on him for the last week we see all the little twitches and involuntary movements that weren’t there before. He’s very sleepy today and has opened his eyes lazily a few times today, but not for long. Maybe that’s because we get up in his face any time we see them open and he just wants some space. A couple of times he opened and closed his hands a bit and wiggled his forearms on the pillows. If I put my pinky between them and the pillow he’ll fumble for a bit and try to hold on with his long little fingers. That’s cool.

The one thing I notice missing from the room today is the cooler with the emergency blood supply that was standing in the corner. Looks just like one of those Colemans you take on a picnic except for the bold type telling you what’s in there. Though the staff usually calls for individual delivery of blood when they need to do a transfusion, they do keep a supply right next to an acute patient’s bed they can get to right away if there’s an emergency. Even though no major equipment was disconnected today, we’ll read it as a positive step that team felt it was safe to remove the blood cooler.

I don’t think I’ve mentioned that Rudy was actually the first pediatric CTICU patient on this ward. This hospital is only a few months old and it takes awhile to get all the specific licensing done. Up until now pediatric cardio-thoracic cases had to go upstairs with the adult heart patients. The plan was to eventually have a wing of beds for CT cases with dedicated nurses within the pediatric ICU so that this whole section could be for kids and their families. Even last Friday, Dr. Reemtsen told us we would be upstairs, but some things seemingly fell together and on Monday we found out that we would be staying here. No difference at all in the care, but it does make for a unique community of families in similar circumstances. It seems that most of the patients have come and gone since we’ve been here, but the long-term cases tend to find each other. Two doors down from us there’s another Santa Barbara family with a two-month old that had to be airlifted here on Monday and undergo several hours of surgery yesterday. So we check in with each other, commiserate and swap war stories we wish we didn’t have to claim as our own.

We also had to say good bye to our new friends Leilani and her sister-in-law Lauri today. We were fortunate enough to be seated next to each other in the surgery waiting room on Monday and got to experience the surreal adventure together. As if sitting there in angst as our little baby was having this risky surgery wasn’t enough, we endured the irritation of neighbors on their cell phones and blessed volunteers who mispronounced just about every name they had to call to the desk (so three families could be alarmed at a time until it was finally straightened out which one was being summoned). Throw in an active little toddler pulling the fire alarm and I was about ready for my own heart surgery. Through the morning, our pleasant hellos progressed to exchanged smirks, raised eyebrows and nervous laughter as we tried to hold the neuroses at bay. We finally got to introducing ourselves (so at least we’d have that behind us when Allen Funt came out from behind the planter to point out the Candid Camera) and we discovered that Leilani’s husband and Rudy were on bypass at the same time. We continued our visit over lunch next door and managed to keep in touch through chance meetings in the hospital lobby. We were so glad to hear that they were discharged this morning. Good health to you, Mike! God bless you all and hope you return to the ocean soon. If you ever get to the anchorage off Goleta, dinner at the Beachside Grill’s on us!

Tomorrow, the kids are coming to stay the night. After some of the initial bumps, they’ve been troopers and have had a good week. Hopefully, Rudy is resting up for his day with them. We’re excited to see them, so in case updates are few this weekend, you’ll know it’s cuz we’re having fun!

Another Member of the Brian Reemtsen Fan Club!

While doing some googling today, we came across a site of another person who has been in our favorite heart surgeon’s care. Not the usual pediatric patient, but a great account of the quality of the team here at UCLA. We’ll write a tribute of our own soon!

http://saipanscuba.blogspot.com/2008/09/two-week-follow-up.html

To read what Mike wrote about Rudy, click here:

http://saipanscuba.blogspot.com/2008/10/putting-it-back-into-perspective.html

So glad that the same team giving our kid a chance at life is giving Mike’s kids a chance to have their dad! The internet rocks.

Another Milestone Surpassed!

Well, it is almost 4pm here on the west coast and I’m wondering where in the world today has gone. We left Rudy’s room around 11:30am so they could start the “closing up” procedure and Dr. Reemtsen met us in the waiting room about an hour later to let us know he was done. All remains stable so far…although Rudy is going pee pee, his kidney function right now is still cause for concern but all the really smart people around here seem to think that it is just a matter of time.

So now we pray against any infection from preventing his healing and we begin to pray for the next hurdle…getting him off the ventilator and breathing on his own. Once that is accomplished then he needs to start learning how to eat. He’ll be given my milk through a feeding tube at first, then gradually work his way up to learning how to nurse (we pray!!!) – not an easy process from what I understand. But that’s work left for another day…today we are just sitting and resting with Rudy and enjoying looking into his eyes every now and again when they open.

Closing Time!!

Trish and I arrived at the hospital just 15 min ago and were let into the CTICU by Dr. Reemtsen who said he was going to be back in 30 min to close Rudy’s chest. Much quicker than we expected but the team is so pleased with his progess that there’s no reason to wait. Despite how it sounds, this is something they’ll do in his room and will last about 30 min. They should be starting in 15-20 min.

Torn Between Three Loves…

We slept last night like we haven’t in awhile. We got to bed around 12:30 and even though we popped up a few times during the night, we were awakened at 7:45 by the kids calling before they headed off to school. I called over to check on Rudy and got a report that he had held steady through the night and was doing OK, so we took our time eating breakfast and getting ready to come over.

Trish woke up hoping that today would be a tearless day, but unfortunately that quickly wasn’t the case. Not long after we got to the CTICU, we heard word from her family in Kansas that her father’s diagnosis is Glioblastoma which could not be fully removed and is not curable. After the way last night ended with Livy begging us to come home, it added another place to those we wish to be: with Rudy, with our other kids, and now in Kansas with Trish’s family. Please continue to hold up Trish’s family in prayer – her parents, Dick and JoAn, as well as her two older brothers and their families.

The hospital staff quickly became aware and though we got quite a bit of empathy and kindness. It’s weird to be the hardship family everyone might talk about in the break room—did you hear what else happened to them? It can make one wary of tomorrow, but it seems the best way to make it through this is to wear a kind of emotional hospital gown. You try to keep it buttoned up at first and make a good appearance, but after awhile you let the flaps fly open and don’t really care anymore who sees what. There are powerful emotions on this journey. Trying to stuff them could likely make you crazy.

In the midst of all this, Rudy is a superstar and has become an unabashed favorite among several of the hospital staff. Maggie the Cardiology Fellow likes to give a “Rud-ee! Rud-ee! Rud-ee!” cheer when she comes in to see him. Everybody thinks he’s really handsome and the medical folks say he’s a model patient. His vital signs continue to be perfect and every set of labs is progress in the right direction. The big concern today continued to be that he would start peeing regularly. Last night, Dr. Nita realized she was coming in so often to check his little tube that she finally just laid down on the chair bed in our room to save herself the walk. The kids were a bit taken aback that we told them they should pray for that today (Wilson preferred we refer to it as urinating—probably makes for a more proper prayer if one must actually ask the almighty for such a thing). Every doctor that came by this morning looked intently at the tube leading down to the foot of his bed as they came through the door. Finally this afternoon, the diuretics did their stuff and Dr. Harrison (the ICU attending) said it was time for dancing in the street.

We went out to do some shopping, the most important errand being to get Rudy some socks as his feet sometimes get cold. He’s got them on now and we’re torn as to whether his feet are cuter with them or without them. They backed off the paralytics this afternoon as he’s progressing very nicely and they’d like him to be able to move a little bit as this would prevent fluid from amassing in his tissue. Among the “preparing us for the worst” items yesterday was the likelihood that he would be very puffy until they could get all the fluid to properly drain from his body, but that hasn’t been the case. Especially now that he’s peeing, he looks leaner than he did in the birth pictures. Dr. Reemtsen says that if he keeps progressing at this rate, they’ll close his chest on Thursday for sure as they have left it open to facilitate draining and let swelling go down. Don’t think I mentioned that detail—we learned of it during our first consultation here at UCLA. It’s not as bad as one might think, though Trish hasn’t been curious enough to look. There’s a mesh over the opening and then what looks like yellow plastic wrap over the top—but they assure us it’s a very tough material.

The coolest thing about them reducing the paralytic drug is that he can open his eyes now, so as I sit here looking at him he has them lazily open just a bit. When we come close, hold his forehead and start talking they slowly open up to about halfway. If one looks long enough and close enough, every so often there will be the slightest movement of his mouth and tongue. I wonder if he’s getting tired of having his nutrition by IV and wants to get some of the real stuff. It’s pretty easy to hover over him for hours and just watch, but we also need to let him get his sleep.

It’s almost 11pm and we should head off to bed for some real sleep, even though it is so peaceful right here with Rudy I almost want to bed down here for the night. Monina is tonight’s angel so we’ll rest easy. Thanks, Jesus, for guiding our little boy today. As today was such a day of extremes in our family we’re learning to embrace the good with the bad and trust God’s hand in both.

The Most Intense Day of Our Lives

Thanks so much for all the prayer on our behalf today. I don’t think I’ve had a more loaded day. It’s 11:15 and we just got back to the Tiverton guest house after spending some time with Rudy. The team is very pleased with his status. It was good to see him back in the room, albeit unsettling. Trish was pretty wiped out after all of this and we decided she would go back to the room for a rest. I stretched out on the fold-out chair at the back of Rudy’s room and dozed off intermittently while different members of the team regularly checked on him and made small adjustments here and there. The rarity of this condition was underscored by how many doctors were coming by to take a look–a Norwood procedure is a big deal. Even before we were able to get up to see Rudy, I ran into Dr. Satou in the lunchroom and he was well apprised that the procedure was completed–word travels fast.

It was pretty easy to overlook me behind all the equipment so I picked up a few comments from other doctors lauding Dr. Reemtsen’s skills and was comforted to see him stop in about every 30 minutes to check on things. The nurse told me later that the last time he came by was about 8pm–he had promised us in our initial meeting that he would be closely supervising Rudy’s care and he is certainly making good on that. Throughout the afternoon the reports remained consistent–the vital signs and the labs were all coming back right where they wanted them to be. The one detail of concern is that he isn’t urinating as much as they’d like (indicating that the kidneys have kicked in), so that’s one thing they’re working on. It really is an incredibly disruptive operation–the body gets chilled down to a point of suspended animation and then put on a bypass machine to circulate blood without using the heart. It’s not like they can just flip a switch and have everything come on again, so these next two days are very critical as they slowly bring things up to speed together. One doctor likened it to a tightrope walk, but they liked my own analogy of trying to balance a scale on a wobbly table. Rudy’s situation both before and after surgery has been one of critical balance, but the team doesn’t feel like they ever had to chase after him because he got so far out of allowable tolerances. Praise God.

This day had a comforting ending. I went back to the Tiverton to check on Trish and checked in with the kids by phone on the way. Poor Olivia is having problems holding it together and was begging us to come home. Trish was tired and worn down. Not only was it an exhausting day, but this is about the time postpartum hormonal stuff should be happening on top of it. We decided to go out and get a quick dinner and then say good night to Rudy up at the hospital. We ended up spending over an hour up there as the room was so peaceful. Rudy progress is a comfort, but more than that was the time we were able to sit and visit with Nita, the Cardiologist who will be watching over Rudy tonight. Another super-gifted doctor and a gracious warm-hearted person who served as a very friendly debrief to our day. She’s one of many who are patient with repeated questions and her knowledge of what we’re facing puts her in a position to offer unique comfort. She again reiterated that this is the time for us to sleep–they’ll be in there with Rudy almost non-stop tonight, so we can rest easy and leave him in her and Nurse Monina’s hands.

Thanks again for praying us through the day.

Rudy’s Out!!!

Dr. Reemtsen just came to us at 11:50 am. The surgery went very well and without any major issues. More detail later, but we are pretty overwhelmed and so glad this morning is over. They’ll take him up to the floor in about 30 min so we’ll give them some time to get him settled in. Can’t even figure out what we’re feeling, but just grateful to God to be sitting out under the blue sky with a huge weight lifted off us.

Surgery Update

Just got a call here in the waiting room that gave us a start. Way too early. The OR nurse just wanted to give us a report that everything is going fine, bypass is set up, and Dr. Reemtsen is starting the critical part of the procedure. Glad they keep us posted, I guess. We’re praying and trying hard not watch the clock. But I know full well when 40 minutes is up. Please pray.