a.k.a. The Milk Maid

Today is October 21st and it’s hard to believe that today was the date originally slated to induce labor! My oh my, nothing in this odyssey has gone according to plan but I can say that in this moment of this hour of today I’m thankful…extremely thankful for the quiet morning we’re having after a string of, at times, terrifying moments over the weekend. The episodes in the past few days have set us back potentially a week which isn’t discouraging to me as long as Rudy remains stable. The hardest part of this past weekend was watching him struggle. At one point, Olivia and I were in the room with Rudy when he started having trouble. The team came in to tend to him and I started to get more and more uncomfortable with Olivia in the room so I decided to leave with her and take her back to the hotel room but I was heartbroken leaving Rudy knowing he was struggling so. I was torn and didn’t know which was the better choice. I cried on the walk back to the hotel. Not really aware that Rudy was distressed, Livy patted my hand as we walked and said “the tears just come and go, don’t they?”.

(I apologize in advance if this is too much information…) Another odd dynamic to this whole scenario is that my milk has been in a perpetual state of “letting down” since Friday…a constant (and somewhat exhausting) reminder that things aren’t as they “should” be. I’m getting quite a reputation in the CTICU for my milk production. Because I don’t have a place to store my milk, we’ve been storing it at the hospital and the various freezers on the floor are getting full. The classic quote on this subject came from Olivia when she saw me pump for the first time and ran out of the room to tell her brothers that “Mommy’s making milk like a cow!!”. So, you can add “milk maid” or “Bessie” to the growing list of new names for me. It’s all okay with me as long as Rudy will one day need it! He’s off all breastmilk now and will be for a while so in the meantime I’ll keep dispensing and finding creative places to store it! I don’t know how good the milk is, though, with all the emotional dips and outbursts of the past few days, I’m surprised the milk isn’t coming out curdled!!

Your amazing persistence in praying for Rudy and our family is GREATLY appreciated. Thank you!!!

All’s Calm on the Night Watch

After the day we had, I’ve come back to sit with Rudy for a few hours. Just as we left this afternoon, they backed off most of the medications, so when I came in he had his eyes wide open and was looking around–I only wonder if he realizes what kind of day he had. Within a minute of my coming up to him, all the alarms started to go off as his heart rate, blood pressure and breathing all went up. Excited to see you too, champ!

In the hours since, he’s calmed down and now the numbers look beautiful. About an hour ago, Dr. Lee came in and was considering some medication to lower the blood pressure, but before they could get it in the drip it dropped on it’s own. I think he fell asleep. So now, the room is tranquil and I think he might be lulled into deep sleep by the bubbling of the chest drains–that’s right, the polar (I mean “generic”) bears are back, but now he’s got a twin set and they rigged them with some kind of bubbling water effect so it sounds like a babbling brook in here.

In case your curiosity is piqued, here’s what generic bears look like:

Not sure what this is about? Click here and then here for the background on this important issue.

Not Quite the Calm Day we Prayed For

Rudy’s been on quite a ride today. The weekend had activity enough, so as we walked into the hospital this morning, Trish offered up a quick prayer for a calm day with no surprises. But that wasn’t to be. It’s now just about six and we’ve sat here at Rudy’s bedside for the longest stretch so far today—about 40 minutes. Rudy underwent three procedures today that had us out of the room for as much as 2hrs each time.

When we came in this morning, he looked plump as a turkey due to infection and the fluids he was retaining. The skin on his torso was stretched taught and shiny from all the stuff in there. Through the night, the doctors were very concerned with keeping his blood pressure high. When we left last night the alarm for low blood pressure seemed to be going off every three minutes and that pattern continued. By this morning, they put him on another dose of paralytics and sedatives so that the team could regulate his blood pressure and ventilation without any movements of his interfering. While this was still categorized as part of the “ups and downs” it was an emotional step backwards to see him immobilized like he was around the surgery.

They decided to insert two chest tubes to drain the fluid off his lungs. The fluid coming from the left side bore evidence of infection, which confirmed the course the team had started with antibiotics a couple days ago. Fortunately, it was determined that the fluid was just “milky” and not “puss-y” (finally some medical terms we understand)—the latter would have been signs of a more advanced infection that would have set things back further. Almost immediately after the drains were placed, his body looked remarkably deflated and both his blood pressure and breathing began to improve. Relieving all that pressure made it easier for his blood to pump and his lungs to work. As we walked back into his room, we were asked to give consent for the insertion of a new IV catheter line into his chest which meant we had to leave again. Unfortunately the nurse was not able to place the line through his little arm veins (something they warned us might happen) after multiple tries, so after a brief return to his bedside it was decided that Dr. Kelly would put in a chest port, so even though we were running out of lobbies to sit in, we stumbled out for another hour or so. This procedure went well and an X-ray confirmed that the line was in the right place so now Dr. Abel and Nurse Katrina are making final adjustments next to me as it’s getting dark outside.

The vital signs and labs are looking good. They’ve backed Rudy off most of the medications and he’s starting to wake up. A few minutes ago, the alarm went off for high blood pressure which is something we haven’t heard in awhile. The ventilator has been turned down to 30 breaths per minute after being above 40 the last few days. The team feels good about how he looks, but we can’t help feeling he looks a bit pale and wiped out considering the day he’s had. Here’s praying for a night of rest and that calm day to be tomorrow.

Clearing Rudy’s Chest

The doctors are watching Rudy closely and just asked us to leave so they could put in some drain lines to get the fluid off his chest. Fighting the infection is the primary focus right now. They have put him on paralytics again so he doesn’t move as that could have averse impact on blood pressure and fluids in his body.

Everyone’s Trying to Catch Their Breath

It’s Sunday evening and the ups and downs this weekend leave us feeling sapped. Rudy was stable through most of last night until about 4am when he had another drop in blood pressure. This one was corrected with a change in medication. He was stable through the morning and then had a serious drop around 11am where the team had to jump in and do chest compressions for about 90 seconds until they got him stable. Fortunately, Drs. Reemsten, Kelly and Shannon were among those present (on Sunday morning—I don’t think they ever bring in a B-team here) and after wheeling in all the equipment for ultrasounds, Xrays and Echos it was determined that the primary cause was a clog in his ventilator that he wasn’t strong enough to clear. His major organs and especially the heart were looked at closely and determined sound. Later in the afternoon, they did an ultrasound on his brain just to make sure the episode didn’t cause any neurological damage. All was determined to be clear and the team continues to feel that these are part of the ups and downs that come with such a complex surgery on a delicate patient.

If this is part of the ups and downs, we’re not sure what it will feel like to experience some full blown complications. Dr. Reemtsen let us know from the outset that he would always be frank with us and tell us clearly if we ever get to a place where circumstances are dire, so there have been a couple of times in the last two days where I’ve reminded a doctor or two of this and been reassured that this is still a matter of time and these kind of setbacks are all things that need to be watched closely, but among the issues that arise with a patient like Rudy. As I write this, Rudy looks peaceful and angelic having had a bath at the end of all the episodes today. After being almost off all of medications on Wednesday, he’s now back on a whole slew of drips for blood pressure, infection, kidneys, blood product and a nice sedative so he can sleep. I’m thinking of asking the nurse to sneak Trish and I a couple doses of our own of the latter.

The two issues that seem to be of primary concern are infection and Necrotizing Enterocolitis (NEC). The latter is a common but potentially serious condition where the bowel doesn’t work (perhaps due to poor circulation) and it can develop into a rupture which would require surgery. As yet, they are taking Xrays every six hours and don’t see any ruptures. So now they address it by restricting food and giving antibiotics. They did discover some infection in cultures taken around his ventilator tube, which could also explain the accumulation of fluid around his lungs, lower blood pressure and general weakness. They started him on a course of antibiotics yesterday afternoon which will hopefully address both conditions.

In the midst of all this activity, the kids came to LA for a visit this weekend. Really great to see them, but I think I have a sense of what prison furlough must feel like. They really are troopers and we are so grateful for Oma and Opa taking care of them, but it’s clear the separation is taking a toll on them. We were able to squeeze in some time for fun on their terms (skatepark, movie, football, play) but it still included a goodbye that came too quickly for us all. We were hoping that I would be able to get back to SB sometime this week as even just a couple days up there could go a long way for them. I still would like to do it, but even a passing conversation with a doctor in the hallway this evening affirmed that we’ll need to stay close by Rudy for the next couple of days.

So please pray that Rudy’s blood pressure would stabilize and that antibiotics would do their work on the infection and the NEC. Pray that he would rest, gain strength and be able to move along in his recovery. Pray that we would be patient—at peace with the timeline for all of this and that we would have renewed confidence for a positive outcome for Rudy after the unsettling experiences of today. Pray that our kids would be at peace at their own level of understanding and emotions of this whole journey and that we would be wise as to what they need and be able to make decisions to leave Rudy if Wilson, Max and Olivia need us.

Slowing the Pace

Rudy had some challenges yesterday afternoon. He began to struggle with his breathing more than the doctors wanted as the ventilator was progressively being turned down over a series of hours. His blood oxygen saturation was consistently low and his digestion slowed significantly (an early sign of distress). The doctors also discovered a thyroid deficiency and were also concerned about the level of fluid in his lungs (too much, so by late afternoon they decided that he needs to rest and gain strength for awhile. They took him off breast milk and turned the ventilator back up to where it’s doing all his breathing for him and gave him time to rest. So, he’s been on this course through last night and most of today.

The doctors have told us that they will always communicate clearly, especially if there are major complications, so we are trying to hear them very clearly that this is a setback, but not outside the scope of what they would expect in the treatment process. It is a bit of a discouragement to have to re-adjust our timeline and realize we may be looking at a matter of a week or more rather than a few days to get him off the respirator. So please pray for him to continue gathering strength and to give him comfort in this process–he’s continually more expressive and the soundless crying fits can be tough to watch. There are increased risks of pneumonia for patients who are on ventilators too long, so please pray for protection from that and that the thyroid production would kick back in. On a positive note, his kidneys continue to make good progress with the creatinine falling to 1.1 this morning. This afternoon, they will do an Xray on his stomach to make sure that there’s nothing physiological interfering with his digestion.

I went to see Rudy at 6am this morning and since then we’ve been away from the hospital with the rest of our kids. Please pray for them during this time. Trish and I are trying to be wise in the way be balance life during this separation. The longer it extends, the more we will need to look at taking some trips home so that we aren’t just trying to cram time in with them on the weekends. They are always eager to see us, but having to make the trip to LA too many weekends in a row could get old.

Where’s Rudy?

We thought Rudy’s rig was worth documenting as it is quite impressive…Rolf can fill you in on each and every monitor and drip…all I can seem to focus on is the little monkey in the middle of it all. No new major developments this morning, but we are a bit weary with the waiting. The doctors do not see any cause for additional concern, but feel that Rudy needs to get stronger in order to make progress on the ventilator. It seems they’ve made two attempts at progressively scaling back the ventilator this week, but he’s struggled to keep up. So now they’re taking things at a much, much slower pace. He is taking nutrition well, so hopefully this will allow him to get stronger and we would appreciate your prayers to this end. Please pray that he would continue to make steady progress toward breathing on his own so we can get that tube out of his throat. Yesterday he did seem to get pretty upset at times and that’s tough to watch–a full-on baby tantrum with red face and flailing arms and legs, but not a sound coming out. I imagine we won’t be that bothered by the crying noise when it comes.

Mike from Saipan!!!

Look who stopped by to see Rudy today!!!! Mike from Saipan…see our October 9th post entitled “Another Member of the Brian Reemtsen Fan Club” (link below). Mike is preparing to return to Saipan soon and made a stop to meet Rudy during one of his last visits to UCLA. What a treat to meet him…such a nice guy and such a small world.

https://rudysbeat.wordpress.com/2008/10/09/another-member-of-the-brian-reemtsen-fan-club/

Seeking the Good in Suffering

The evil results of pain can be multiplied if the sufferers are persistently taught by the bystanders that such results are the proper and manly results for them to exhibit. Indignation at others’ sufferings, though a generous passion, needs to be well managed lest it steal away patience and humanity from those who suffer and plant anger and cynicism in their stead. But I am not convinced that suffering, if spared such officious vicarious indignation, has any natural tendency to produce such evils…I have seen great beauty of spirit in some who were great sufferers…and I have seen illness produce treasures of fortitude and meekness from the most unpromising subjects.

C.S. Lewis The Problem of Pain

In the brief time I had back in Santa Barbara prior to Rudy’s surgery, I considered bringing along the above title but thought the better of it; partly because I wasn’t sure I’d have the concentration for thoughtful reading but more because of my tendency to carry six books in my luggage when I probably won’t make it into the second. As it happened, friends Bonnie and Monique came to the hospital with a book of daily readings from Lewis that serves things up in easily-digestible chunks (please pardon the jargon). The readings for October are all from The Problem of Pain so I’ve enjoyed being spoon-fed this wisdom each day.

I appreciate the words above for Rudy’s sake and my own. Trish and I are so blessed to have such a cadre of friends walking with us through this. Our kids see and experience it and I trust Rudy will know it as well. Life on this journey includes lament, frustration and anger, but I have pondered the appropriate place of this. It would deny something very human to suppress such feelings, yet I’ve found little to gain by taking offense on someone’s behalf. I don’t think I’ll ever get to the point where I can be glad for what Rudy has to go through. I hope it won’t be viewed as ingratitude to say that any and all of the blessings received within this time don’t make me grateful for HLHS. I’m not looking forward to conversations in the years ahead where we have to be frank about Rudy’s physical limitations and perhaps explain to him once again that he can’t engage in certain activities. But I don’t want to be angry. I don’t want him to be angry. May the fortitude and meekness Lewis displayed in his own life bear fruit in ours.

The patient vigil continues here in CTICU room 5439. As Trish has already indicated in her post (we’re engaged in a laptop duel this morning), Rudy is making slow and steady progress and we’ve made some adjustments to our own expectations regarding his timeline. While his initial bounce back after surgery got us hopeful that such a pace would recover in his recovery (with the breathing tube coming out sometime last weekend), the pace is not concerning the doctors. They tried to back him off all medications on Tuesday, but decided yesterday that he still needs some to regulate blood flow and kidney function.

In the last couple of days they have rolled in some of the big machines to examine his internal organs just to make sure there’s no damage and everything is checking out fine. They want to make sure Rudy gets enough nutrition so he stays strong and that his body continues to gain strength and not lose weight. The good news is that his creatinine level is down to 1.7 (from the 2.4 range) so the nephrology team is happy. Over the next few days, the team will take things more slowly on the ventilator, turning it down in very slight steps to see how he adjusts.

As I write this, Rudy is wide-eyed and alert. Every now and again, he stretches out his arms and holds up a fist—kind of like a football player does when he’s being carted off the field to assure his teammates he’s OK. Trish and I are would like to remain here together until they free him from the ventilator as that will be our first chance to hold him other than the brief instant just after birth, but we sure were hoping that chance would come this weekend. It looks like we’ll have to wait until next week sometime. At that point, I think the staff can roll his crib out of the room and give it to someone else because I don’t think we’ll be putting him down.

Happy 2-week Bday! 10-15-08

Wouldn’t ya know, Rudy spent the entire day yesterday sleeping until 11:30pm!!! Just as we packed up all our bags and started heading out the door for the night, he opened his eyes and was wide awake ready to play!!! So, we put our bags down and hung out a while longer not wanting to miss a chance to interact with him…we enjoyed the 30 minutes we had to celebrate with him on his 2 week birthday before WE began to nod off. Ha Ha Today he is holding steady with no major improvements or setbacks. The longer he stays on the ventilator, the longer it will take to get him off but the doctors remain hopeful. We appreciate your continued prayers for progress in this area…yesterday’s echo-cardiogram confirmed that structurally his insides are sound! Go, Rudy, Go!!!