Three Steps Back?

Well, if I count the number of tubes/lines that were REINSERTED into Rudy today, I’d say we took 3 steps backwards!  I drove back to UCLA this morning from a great weekend with the kids in SB to find a room full of folks in Rudy’s room (never a good sign).  Dr. Mary (pronounced “Marie”) caught me at the door to tell me that Rudy was struggling with low blood pressure and low saturation numbers as well as needing more vent support because of a high heart rate.  All the indicators were pointing toward infection again.   (There are two nasty bacteria that keep recurring from around his ventilator (ET) tube)   After the morning rounds, a chest x-ray AND chest ultrasound, the docs determined it was time to put the chest tube back in.  As Dr. Rick described, the amount of fluid detected in the x-ray and ultrasound wouldn’t necessarily warrant the chest tube but because Rudy’s system is weakened by the infection, they need to get rid of the pressure…he just can’t breathe past it.  In addition to the chest tube, they put in an arterial line (ART) to more accurately monitor his blood pressure.  Then, late this afternoon, the nurse put his urine catheter back in his tollywaffer since he wasn’t urinating and they need to monitor that more closely again as well!  Ugh!!!  As a result, he has been sedated most of today and just now opened his eyes long enough to look at me, give me a quick “hello”, and then sacked out again.   Right now he is stable…his numbers are back where they should be but it took all day to tweak everything (from vent settings to meds to blood transfusions, etc)  just right…it can really be a maddening balancing act sometimes.   

This chylothorax fluid continues to be a real beast!!!  Last week I left with the impression that it was still just a matter of time…I talked to a couple of doctors who said they’ve seen prolonged battles with chylothorax fluid before that eventually cleared up and that was somehow comforting to me.  Drs Brian and Dan, however, feel we have run out of time to wait much longer…As Dr. Dan described, the longterm cases of chylothorax fluid they’ve seen did not prevent the patient from being extubated…in Rudy’s case it is and we just can’t wait to extubate him.  It’s a vicious circle…we can’t extubate until the fluid is gone and as long as Rudy is intubated he’ll battle this recurring infection weakening his system in general!!! 

As I understand it, the lymphatic system collects the fluid from the venous system and takes it back to the heart through the thoracic duct.  For whatever reason, the fluid in Rudy’s lymphatic system is leaking which is why they went in and ligated the duct (which normally causes it to stop leaking).  For an unknown reason it didn’t stop the fluid from leaking in Rudy which means there may be another thoracic duct (HIGHLY unlikely) or an extra lymphatic vessel somewhere that  is leaking.  To determine where the fluid is coming from, the team is considering a LYMPHANGIOGRAM.  Apparently it is pretty rare and only one doctor at UCLA does it…they are waiting to hear back from this doctor so I will know more details later.  It would basically map out the lymphatic system and potentially show where the fluid is coming from exactly allowing Dr. Brian to go in and hopefully fix it.  The lymphangiogram would be to the lymphatic system what Dr. Dan’s heart catheterization was to Rudy’s heart last week – a test that would hopefully give us some definitive information.  The results would help Dr. Brian determine what to do next…possibly a procedure called PLEURODESIS which closes off this space between the lungs and chest cavity preventing the fluid from accumulating.

I don’t know…it’s all a bunch of crazy information that, for now, doesn’t really mean a whole lot to me…I just REALLY want a breakthrough (as does EVERYONE else around here!).  I still would welcome a divine breakthrough for Rudy’s sake while at the same time bypassing the need for me to try to understand all the above information!!!!!!  Well, my little man is waking up finally!  I better go tell him how much I love him!!!  Thank you for praying…

14 thoughts on “Three Steps Back?

  1. I am so thrilled that you have both been able to hold Rudy.

    We are still praying for you all, and hope this week will turn out better and move him forward toward your goals.

    Hugs and kisses to all.

  2. Oh my, Trish. I will continue prayers and strength for little Rudy. I do hope you have an answer soon. Love, Donna

  3. Three steps back, that will help propel you guys ten steps forward :We will focus on praying for a quick recovery, and this infection to clear QUICKLY !
    Faith anf Richard Groves

  4. Trish, I feel so sad for you and Rolf, for little Rudy….we’re all disappointed at this setback….I’m so thankful for all those wonderful doctors and nurses who are fighting along with you and so carefully consider Rudy’s case. Dear Lord Jesus, bring wisdom and peace!

  5. Oh Trish I am fighting back tears but it just makes me all the more determined to keep on fighting on my knees – for that breakthrough you are talking about! Oh precious Rudy, we love you here in Novato! Hang in there Trish my friend…

  6. Wow. I’m really feeling devastated here tonight. I can’t even comprehend how you and Rolf must be feeling.

    I continue to believe that Rudy is close to rounding the corner. Keep the faith! Our God is good! And He is with you all, always.

    Many prayers for some good news tomorrow! Stay strong!

    Much Love!

  7. Hello;
    I attend church with Dick and Joann Wilson and have been praying for you all the last several weeks. It brings me to tears so many times when I read the daily notes. My heart aches for you all. I know you are wearing thin and I pray for continued strength. You will continue to have my prayers as well as for Dick too. What a fighter Rudy is. I pray for a breakthrough soon.
    May God Bless You All!
    Cheryl Wonnell

  8. I’m praying, I’m praying! Oma brought me a spare Rudy bracelet in case mine goes AWOL again–maybe it would help if I wore one on each wrist! In any case, I am storming Heaven with prayers for all of you.

  9. Hang in there, Trish! Keep fighting Rudy! There is an answer to all of this and we will continue to wait patiently while fervently praying for a breakthrough, be it through the skilled hands and minds of the medical team or by Divine intervention (the former, of course, being a subset of the latter!)

    Be strong in the Lord and in the strength of His might!

  10. Oh my Trish and Rolf…we will pray with strength and might that Rudy has a breakthrough and amazes all the staff! Be strong my frined!

  11. Oh Trish I wish that you didn’t have to endure all this. I am praying for you and Rudy all the time. Love you very much.

  12. Trish Darlin’,

    Thanks for the very helpful update on where things stand with Rudy right now. It helps us to pray with you for a breakthrough and for wisdom for these wonderful doctors. May they know exactly what to do for your sweet Rudy this day!

    Take heart, Trish, for the GREAT Physician is with you and he is holding Rudy! May you sense that peace today.

    Love you, dear friend!

  13. Reading your Email is first on my list every morning. My heart goes out to you as you go through such a difficult time. I’m so grateful that you got to hold little Rudy in your arms for a while. I’m sure it felt wonderful for both of you.

    Be assured of my continued prayers.

    Laurette

  14. I am praying every day and in the middle of the night for Rudy and our little Rebecca – the two R’s. I feel so very close to you and we don’t even know each other. Prayer works so many miracles. Please know how much I care. Janet Schafer

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