Anxiety on the Plateau

Last night and this morning were challenging.  While Rudy seemed peacefully asleep most of the day yesterday, late in the evening and this morning he took on a bit more of a troubling appearance.  While his kidneys are functioning and the team feels it is more a matter of time than a cause for alarm, he hasn’t been very alert for awhile and it’s hard to tell whether he’s awake or asleep–his eyes are puffy and he doesn’t open them very far.  When he does open them the look seems a bit more pained as opposed to the quiet curiousity they used to have.  This morning when I came in and got close he got more animated, the guages picked up and shortly thereafter a small tear formed out the side of his left eye.

His lower torso has a lot of extra fluid and shakes as he hiccups and makes raspy snorts out of his ventilator.  Not the most comforting thing to have to sit by and watch.  Dr. Reemtsen and Dr. Levi have both already stopped in (on Saturday!?) with the same message.  We’re on a plateau, things are progressing, it will just take awhile.  They are going to start Rudy on a different diuretic to see if that furthers his progress.

Emotionally, it’s been a bit challenging for us.  After the drama of surgery earlier in the week and Rudy’s initial progress, it was easy to get lulled into thinking this was going to be smooth sailing, but today we’re encountering the reality of this process and the challenges of enduring it.  Thanks for continuing to pray.  We’re excited that the kids will arrive shortly and that Oma and Opa will be able to sit with Rudy for awhile.  We do wish that the kids would be able to see the wide open, curious eyes we got to see earlier this week, but we’ll have to play that by ear.

A Quiet Day

I’ve been enjoying a quiet morning here sitting with Rudy.  Actually it’s now already afternoon—time kind of mashes together during this process.  Yesterday evening I crashed.  I think the unique patterns of sleep and stress caught up with me a bit.  So, I stretched out on the chair bed at the back of Rudy’s room and checked out.  Even with all the lights on and people coming regularly and having discussions about his condition, there’s a rhythmic hum from all the equipment that fades it all together and makes for a bit of sensory deprivation.


Rudy progressed well in the wake of his chest closure yesterday morning and the team has continued the ongoing balancing process making sure that blood is getting evenly distributed throughout the body, that the blood gases stay in check, that heart and breath rates are where they should be, that liquids are draining properly…so many details monitored by so many gauges and switches.  I think I count ten different lines going into his body and two coming out.  Throw in the harness of breathing tubes and the various wires to monitor heart rate, temperatures and oxygen saturation and it’s a very involved rigging.  I’ve noticed the nurses regularly give attention to this, rerouting lines here and there and relabeling all the lines at both ends to make sure there’s no question what’s what.


This morning when we came in they had removed the headband that was monitoring fluid levels in his brain so I’m looking at a nice broad expanse of forehead.  It’s got a nice warm color, but I hope there’s a chance he’ll get a bit of a wash today as I can see some tape residue from the band and he looks a bit like a middle-aged man whose comb-over is beyond help at the end of a humid day.  The team has said a few times that “he’s negative” which is actually positive (we’ve learned to not get immediately panicked by anything we hear).  They track all of the fluid going into his body through all these tubes and then subtract how much is coming out.  If the number is negative, that’s good as it means the kidneys and other functions are performing and he isn’t retaining liquid anywhere, though looking at his little body with his long skinny arms and legs don’t give much evidence of places he would store it.


He needed a transfusion this morning as there was concern about where his blood levels were headed.  His oxygen saturation was getting down into the low 70s so among other measures they increased his blood volume.  The green number reads in the upper 80s now so that’s a good thing.  This falls again among the many things the team does proactively to make sure balance is maintained and we continue to be grateful that his condition hasn’t taken a turn such that they need to chase after something. 


Rudy’s opening his eyes wide and is looking around quite a bit today when he isn’t sleeping and every now and again starts to gnaw and try to suck on the breathing tube.  They’ve got the ventilator turned down to 16 breaths per minute, but he’s getting around 45 which means that he’s breathing on his own over the ventilator.  They may try to remove the ventilator as early as tomorrow, but I have to keep reminding myself that, as encouraging as progress is, this isn’t a race of any kind.  Just now they rolled Rudy’s head right up and now his eyes are wide open and he’s really putting those eyes through their paces—we’ll post the picture shortly.


We just took a quick lunch break and while we were gone the number of tubes was decreased by one as they took out the chest tube that was draining fluid from his incision.  Nurse Cheryl gave him some happy medicine and he’s sleeping comfortably now.  So now there’s one less piece of equipment at the foot of the bed.  Over the last several days, I’ve had good time to contemplate the Oasis Dry Suction Infant/Pediatric Chest Drain manufactured by the Atrium Corporation.  The team would regularly come in to check the tube and how much fluid was going into the reservoir over time.  Eventually the flow lessened to the point where it’s not necessary anymore, so that’s the milestone for the day.  In my time of contemplation, it did strike me as odd that in addition to all the medical language and the measurement gauge on the chest drain was a prominent cartoon of two polar bears fishing on a small tropical islet complete with coconut palm.  Not sure what they have to do with the device’s purpose or if some marketing team testing graphics decided that this would be a more saleable design than bunny rabbits or balloons.  I was intrigued enough to ask Dr. Harrison (the attending) when he came by yesterday.  He admitted that in all his years here he has never noticed the fishing bears on the chest pump, but felt that they looked more like regular brown bears.  Totally unhelpful.  Why are they white then?  Why would they be in tropical latitudes?  Why would they be fishing with bamboo poles and bobbers instead of their paws?  For the first time I saw a member of the crack UCLA team stumped and I suspect he’ll think twice before offering his usual “Do you have any questions?” at the conclusion of his visits.


So, we’re grateful for the peace of this day.  The kids check in regularly by phone and we are so grateful for Oma and Opa as well as the La Patera school community embracing them.  We’re making plans for them to come visit this weekend and stay the night.  Trish is on the other side of Rudy’s bed addressing birth announcements and I would suspect will have them in the mail by the weekend.  After arriving in the room this morning, she divulged to me that she wished she brought along her Swiffer as the smudges on the floor are really bugging her.  I’m wondering if a stop on the Psychiatric Unit downstairs might be in order…


My Love Affair with a Foot

Surgery Day 10-6-08
Surgery Day 10-6-08
Ready for transport
Ready for transport

Hi Everyone!  I’ve been itching to get to my computer all day to read everyone’s comments…being connected to you all through the blog feels amazing…we are so NOT alone and the blog really helps to reinforce that…so, again, thank you, thank you, thank you!  Today is not a day I want to repeat but I’m ending the day so very grateful for it’s outcome.  I’m adding a couple of photos from very early this morning just before they took him to surgery…I thought Rudy looked so handsome in his little blue beanie I just couldn’t resist! 

Rudy’s looking a bit different now…a little paler and drawn in the face…they have discreetly covered his open chest with a blanket but it didn’t prevent me from seeing part of it when we first saw him after surgery…a pretty tough sight for me but I was quickly reminded that although it’s no way to start a life, this is giving him a chance at life and a full one at that.

One thing that hasn’t changed is Rudy’s precious left foot.  When he was first born, I was able to hold him for a minute before the took him to the NICU but since then, we’ve only been able to touch certain parts of his body…mostly the top of his head because that’s the one thing that hasn’t have a tube or cord connected to it.  We’ve, at times, been able to rest our fingers on his little chest and this morning we were able to stroke his soft little back as the nurse turned him on his side for a bit for comfort. 

A day or two after getting all hooked up to his entourage of monitors, they were able to free up his left foot of connection to anything and for the first time, we were able to really wrap our hand around something and hold tight.  It felt so good and that whole day all I wanted to do was hold on to that foot and when I left for the night, I kissed the bottom of it and gave it a little eskimo kiss with my nose!!!  So, for the past few days I’ve had a growing love affair with Rudy’s foot.  It was the last thing I held on to when he left for surgery this morning and it was the first thing I looked for when he came back.  It’s still free of any cords and as his appearance changes before he starts looking like himself again (the doctor warned us tonight that he’ll most likely get quite puffy and to not be alarmed), you can bet that sweet little foot will be the constant I’ll be looking for to grab onto and give a reassuring squeeze!

Good night everybody, Sleep well…Good night Rudy, I’m so proud of you!!!

Just Got In

It’s 2:30 and they let us in to see Rudy about 15 min ago.  He’s looking a little pale compared to his color before the surgery and has a lot more tubes around him. The next 48 hrs will be very critical and there is a team led by nurses Faye and Mary working constantly around him. They say the vitals are very good, some blood gas numbers that just came back are perfect.