Pray for the fluid to stop…

The odd existence we’re living here make times of focused or extended prayer a challenge.  Today, like many days, we uttered a quick “Please, Jesus, let this be a calm day” as we stepped off the elevator on the 5th floor.  Unfortunately we were met with a bump shortly after we got here as we were having a check in with Dr. Reemtsen.  Alarms started to go off and, after a couple nonchalant looks at the screen (the usual first response), the tone got more concerned and then the inexplicable signal went off and six people were suddenly at the bedside dealing with the breathing tube.  Just a few minutes passed and, almost as quickly as they came in, everyone was gone.  No big deal–possibly just an obstruction in the breathing tube.  I’m glad there’s always a couple that check on us before going and we usually lie and go along with the “no big deal” line, but I don’t think we fool them with our ashen complexions and tears welling up.  I don’t think Rudy was ever in significant danger, but I don’t think we’ll ever get used to jolts like this.  Suddenly we’re both in need of comfort foods and are craving Big Macs and lots of french fries (you go to your happy place, we’ll go to ours).

The conversation with Dr. Reemtsen did set forth a plan for the week.  Rudy’s cardiac function continues to be very strong, so much that Dr. Harrison recommended that his next echocardiogram be at his discharge.  Everything they are addressing now has little to do with heart function, the biggest issue being the chylothorax (lymphatic fluid in the chest cavity).  The hope has been that the drainage into the chest drain would taper off, but that hasn’t been the case.  The medicine they’ve been giving him (Octreotide) should have worked by now, but they’re going to give it a few more days.  If there’s no change, the plan is to do another surgery on Thursday to ligate the thoracic duct.  Not a major surgery, but surely one we’d rather not see Rudy have to endure, so please pray that this would heal itself and the flow of fluid to the drains would stop.  So far we’ve seen fluids be very responsive to prayer so let’s channel the same effort that went into producing urine into the ceasing of lymphatic fluid.

Dr. Reemtsen feels that Rudy won’t make much progress until this can be corrected as all of his nutrition is likely just flowing out of his body into the drains.  They are also looking closely at his endocrine system as they are wondering if there’s some steriod deficiency or ongoing thyroid issues that are hindering his ability to move forward.  There’s also been consultation with the infectious diseases team as, though no significant cultures have grown, some of his symptoms (low blood pressure, occasional fevers) are making it tough to rule out).  In any case of extended hospitalization, the threat of infection emerges, so we’re praying against this.

That’s this morning’s update.  In the midst of it all, Rudy is lying very calmly and loves looking up at his aquarium.  I do wonder often what kind of thoughts are going on in his little mind through all of this.

Due Date – November 2, 2008

11-2-08
Rudy

It’s hard to believe today was Rudy’s original due date…my oh my, his birthday seems a lifetime ago. 

We spent the day at his side watching numbers carefully and quietly with the children in tow in the morning and then with a string of longtime friends in the afternoon.  Rudy’s status is stable this evening.  His blood pressure fluctuated most of the day and he did battle a low-grade fever but no major dips like yesterday.  The kids got to see him and talk to him while he was awake and alert which was fun for them.  I was happy for the little bit of time they had with him. 
So, here we are at the start of another week…I’m not sure I have the energy to relay details tonight about Rudy’s condition…in general, it remains the same and although the long wait for “real” progress is wearisome, we remain hopeful…hopeful that this week will hold more milestones for Rudy.  Speaking of milestones, this coming week holds two special celebrations in the life of our family…our 16th wedding anniversary on the 7th and the Rescue Mission’s Drug and Alcohol Recovery Program Graduation on the 8th!  Wouldn’t it be cool to add “Rudy breathing on his own” to the list?!!!! 
P.S.  I’m happy to report that the older kids had a fun Halloween…The boys enjoyed trick-or-treating with special neighbors and Olivia went to her first Halloween Party!  Thanks Katie, Nancy, Jacob, Mason, Brandon and Jannele!

Tougher Than the Rest

If your rough enough for love, baby I’m tougher than the rest.  —Bruce Springsteen

This lyric seems relevant tonight as we had another one of those afternoons that are all too commonplace in this process; one that stretches us and makes us realize that this process with Rudy takes toughness.  Just when you think you’ve been pushed as far as you can go, there’s another shove.

The chest drain went in smoothly and gave off lots of fluid, but Rudy’s low blood pressure was of concern all afternoon.  We went out to get some fresh air with the kids and shortly after we returned to the room the activity in the room suddenly picked up.  I still wonder how these ICU people communicate–first just a doctor and a nurse…then a second doctor…then more nurses and care partners.  The room stayed quiet, but focused and intense to where we could pick up that it would be best to pull out the kids and Oma and Opa out to make room for 8 people that were now at Rudy’s bedside.  The phones started ringing as other members of the team answered their pages and I could pick up the concern as I stood watching from the doorway.  I don’t think Rudy was in as much distress as some of the previous episodes and, probably in shorter time than it felt, they were able to find the right cocktail of medications to get his BP where it needed, but it was disheartening for me to watch.  He’s so fragile and delicate and the going is so slow that it really doesn’t feel like we’ve made much progress over where we were a week ago.  My kids were in the next room–they need us just as much as Rudy does.  Yet it’s so hard for me to focus my attention anywhere else.

That Springsteen lyric first came to me yesterday as we were watching the pediatric patients trick or treat down the hallway outside.  The staff had taken time to set up at different doorways so they could have as realistic an experience as possible.  The kids were cute, but I couldn’t take my eyes off the parents even though few of us were able to make more than a few seconds eye contact.  This wasn’t the Halloween they hoped for, yet they show up for their kids and enthusiastically wheel them down the hallway, making sure that IV lines don’t snag and that costumes can somehow be tied on around the medical equipment that needs to stay attached to their kids.  Some of them do it very tentatively and hesitantly and I hope that means that this holiday in the hospital is an anomaly.  But other parents move instinctively and maneuver the equipment with a second nature that makes it clear that this isn’t the first time they’ve had to do this.  These are the tough ones–tougher than the rest.  Who knew what our love for our kids would demand of us.

 

Another morning mystery…

Rudy had a very peaceful night and we were hopeful that today would be a day of gaining strength for him, but unfortunately he’s run into difficulty breathing over the last couple of hours and the team is trying to figure things out.  They ran a full battery of exams at about 7am which all came back clear (blood tests, chest Xray, etc) but they’ve just ordered a repeat of them all (it’s 11:45).  They’ve backed the ventilator way up and are trying to figure out the low blood pressure.  Another one of those mornings where there’s lots of activity in the room and several hushed conversations at bedside between doctors, nurses and respiratory techs.  I hear the distinctive sound of the Xray machine rolling down the hallway toward our room right now, so we’ll have to clear out.

The kids are showing up in the next hour and I sure wish they would get to see Rudy at his best, but for some reason he’s having a battle during most of their visits.  Right now, he clearly doesn’t like what their doing and is letting us know with one of his silent tantrums.  He’s not making any noise, but as he’s lifting his heart rate above 200 bpm and dropping his O2 saturation below 50%, it’s by no means quiet in here–plenty of racket from all of the alarms.

We’ve had a lot of discharges on the unit.  Hopefully it means a lot fewer kids had to spend Halloween here.  For staffing purposes, they moved just about everyone they could to another wing so it’s a bit of a ghost town on our end with lots of empty rooms.  The upside is I can go into the vacated rooms and exchange our chairs for better ones (kind of funny all the swapping that goes on here as patients leave).

The Xray just came back and it showed a significant accumulation of fluid, so they’re going to have to replace the chest tube.  Up until now, they’ve watched it closely and been a bit surprised that the fluid hasn’t come back, but things have changed quickly since today’s early morning Xray.  So, unfortunately the kids will have about 15 minutes to say hello and then we have to clear out for the procedure.

Happy Halloween 2008

It has been a challenging day getting Rudy’s blood pressure stable after the morning attempt at re-inserting the left chest tube.  He is calm and alert this afternoon and the team has decided not to make another attempt at the chest tube today.  They’ll take another chest x-ray in the morning and see.  The good news is that Rudy’s breathing has remained strong throughout the day.  There hasn’t been a need to up the bpm’s on the ventilator and he is holding steady at 14 bpm.  So we continue to wait, wait, wait.  To break up the monotony, we had a little Halloween fun as you can see.  The pediatric patients on the floor had a costume parade earlier today which Rolf and I attended since Rudy was asleep anyway…it was very sweet and they all had a fun time but it was also heart-wrenching to see the kids parade around with their rolling IV towers, etc…  I couldn’t help but think about Wilson (aka Davy Crockett), Max (aka Jack Sparrow) and Olivia (aka a cowgirl) who are, most likely at this moment, getting dressed for their night of candy collecting!!  Have fun little ones!  We’re looking forward to a family visit tomorrow!!

'Not quite sure he likes being a pumpkin...

Waiting…waiting…waiting…

Having learned the lesson Charlie Brown never could (that Lucy was never going to let him kick the football), we try not to get our hopes up every morning that this will be the one where the breathing tube is pulled.  Probably wise, because this morning they decided to sedate Rudy so they could re-install the drain line that came out last night.  Unfortunately they weren’t able to get it in, so they’ll probably have another go at it this afternoon.  So it’ll be another day of seeing if Rudy can hold the line.  His numbers have been good and they didn’t need to scale back the ventilator this time and it’s holding at 16 bpm.  While it’s a bit disappointing to have the progress slowed for another day, it’s certainly better than holding off only to have him go into distress over the weekend and lose several.

Quick Update–another tube fell out

Just this evening as we were sitting here, nurse Cheryl discovered the drain tube on the other side fell out.  My first response was to get disheartened as it could mean that tomorrow would be a repeat of today where we needed to knock Rudy out for another procedure so that they could re-install it, but the docs have some reason to believe that may not be the case.

When they originally put the drains in, Rudy was swollen up like the Michelin Man, but as fluid drained, the skin around them became looser to where they often lose hold and fall out.  Right when it came out, Dr. Abel called for an Xray so he could look for an air pocket as this could lead to his lung collapsing.  Fortunately, they didn’t any sign of this.  As it was, the doctors were discussing whether to pull that drain today or tomorrow (to prevent infection I think), so please pray that no further fluid amasses and that the medicine they started tonight to stop the fluid from secreting would act quickly.

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!

October 29, 2008 – Happy 4 week Birthday Rudy!

Today is Wednesday October 29th and Rudy was born 4 weeks ago.  Quite a milestone in our little world that is so centrally focused and limited by the boundaries of the 4 walls around us.  Rudy’s condition hasn’t changed much today which is a good thing.  When Rolf and I arrived this morning, he was awake and annoyed!  It was clear he wasn’t happy but it wasn’t distressing for us because it was also clear that he was alert and aware and had alot of fight in him.  His blood pressure was high but all his other numbers were good and by mid-day he had settled down and seemed much more comfortable.  The team allowed him continued rest today and didn’t schedule any sprints off the ventilator but they have gradually slowed down the ventilator rate and he is currently getting 12 bpm which is much lower than the 30 bpm he was getting earlier yesterday.  At this point, everyone on the medical team is iching to get Rudy off the ventilator and there is risk no matter what course of action is taken…so we are praying for wisdom in that decision and God’s life-sustaining support when the tube is finally removed so the little guy doesn’t have to be re-intubated.

It seems I’m the one who got a gift on Rudy’s one month birthday.  This afternoon Rudy’s nurse asked if I could help her change Rudy’s bed sheets.  I jumped out of my chair so quick realizing that I haven’t been able to do ANY practical chores for Rudy and I was thrilled.  At first the nurse had me scoop him up mattress and all as she replaced a sheet that was positioned underneath his little mattress.  But then she very carefully lifted up his body making sure none of his lines were pulled too tight and said “okay, if you could just hold him like this while I pull his mattress out…”!  I was taken aback because I didn’t expect I’d get to actually hold him!  For the first time, I was able to hold him skin to skin during the time it took the nurse to pull his mattress pad out, replace the soiled sheet with a fresh one and slide it back underneath.  Granted, it wasn’t a “hold to your chest and cuddle” kind of moment, but it was exciting just the same! 

After the bedding change, the nurse worked hard to reposition Rudy comfortably and ended up propping his leg up on one of his stuffed animals and I laughed because he looked just like Rolf in one of his favorite lounging positions!!!  (see picture below)

 

 

So, all in all, today was a good day.  After sleeping a good bit of the day today, we wish Rudy continued deep sleep and a peaceful night tonight.  We wish you a good night’s sleep too!  🙂