Dec 7, 2011

Chest tube in

So here's where I am emotionally (at least for now as of 10:30 Wednesday night)

A few days ago, he was suffering so much and I felt horrible for him.  We were all so helpless.  I couldn't believe how much pain he was in and I want him out of pain.  Even if that means losing him.

But now?  He's been suffering for several days non-stop pretty much.  (He's screaming Owie as I write this.)  And I had a change of heart today.  He's already suffered/suffering ... so we might as well win this fight.  To me, the worst thing would be for him to suffer and then still lose the battle.  So we have no option but to keep fighting and win.  This suffering will have to pay off somehow. 

So I leaned over his crib and told him how strong he is, how much of a warrior he is.  I told him he could do this and that we were going to help him fight but this is mostly up to him so fight!.  He said, "OK".

The rest of the night was full of screams and crazy breathing.  By morning he was really struggling to breathe.  The blood work showed he was still getting enough oxygen but only because he was working sooo hard.  The docs were surprised by the numbers being stable. But I know he's a fighter.  Chest xray showed left lung very "wet" but right lung almost completely full of fluid "pulmonary edema" and it's quite painful.  By the time the docs arrived, he was doing "air gasping/swallowing"... think fish out of water trying to get a breath.  It's so stinkin' pitiful and completely helpless feeling. 

getting a chest xray... he usually says "Cheeeese" the whole time. But not this time.

And then he kinda fell asleep.  He was exhausted.  This is actually NOT a good sign.  When he was screaming like a maniac, he had some "fight" in him.  And now he's lost some fight.   I think he'll get it back.  Even as he slept, he was doing all the signs of respiratory distress.

Doc came in and said they would put in a chest tube to drain off some of the fluid.  He's been on lasix and it's not making a dent ... he's pooling faster than it can come out.  This is a direct line to pull the fluids. 

I was telling him what was going to happen (chest tube) and that he was fine and strong and I loved him. Didn't realize Val took the picture until she showed me later.  Thankful as it's my only picture with him I have. 

Val showed up with lunch and about that time, it was time for the procedure so we had to go to the waiting room. What seemed like an eternity later, it was time to go back.  They were able to get over 200 ccs of fluid immediately off his chest. They also put a temporary line in his femoral vein (upper, inner groin) so they have access for TPN and blood draws.  (There are currently 9 tubes/wires going in or out of him.)

His breathing was much better but not good.  Only time will tell if he still has to go on a ventilator or not.  The problem is ... with his underlyng condition, it's very high risk that he could go on and never go off (be on life support forever).  So we'll only do that if we have to.  (But it's a distinct possibility that he'll need a breathing tube.)

the orange is a cleaner, not blood. See the blue box? the tube coming out of that is the chest tube

Dan and Kaley came by for a little bit.  Kaley was quite emotional ... not outwardly with words but with actions (like clingy).  She said she cried all night last night worried for Manny.  She's the only one who has seen him in this condition. She asked if she could sleep in my bed tonight until Daddy goes to sleep.  And she kept wondering how quickly she could return here with me. 

Kaley in her bow (it was the belt from the isolation gown we have to wear).  Cute, huh?

So tonight as I type this after a long, emotional day, he's sleeping (finally).  His breathing is questionable.  And the whir of the chest tube machine is actually quite therapeutic (like a fish tank)  .. unless you think about what it is for and doing.

His weight is back down 1kg which is great news.  He was 15.4 last night and 14.4 tonight (but still up from his normal 12.1)
I plan to go to bed really soon here because he is sleeping.  Don't want to miss this window of opportunity for sleep.


  1. Oh dear Beth...I think of you and Dan and Manny...and all your babies at home. I am sending hugs and love and prayers from Arkansas. My heart hurts for you, as I know watching someone you love hurt, aches more than your own pain. I pray you and Manny get a good rest tonight...and tomorrow is a brighter day.God bless!

  2. Thanks for the update! Storming heaven in Louisiana still! Big hugs to you. I know this is so heartwrenching! So glad you are explaining to him what is happening and all! What a sweet boy! LOVE the picture of you talking to him! Chest tubes can so be your friend! PRAYING they can get the infection that is causing all this GONE in the name of Jesus!. So thankful Val is there with you! What a gift from God! :) Praying for you all up there and for daddy and the kids at home. Still believing for Manny's Christmas Miracle!
    love yall,

  3. Wow, that picture of you and Manny is so beautiful and brought tears to my eyes! Love that mother and son picture! You are a terrific mother to your son, Manny. I've been praying so much for Manny and you guys plus reading your blogs and FB entries. Still praying for a complete healing from head to toe! With God all things are possible! Juanita

  4. Hi Beth ~ I found you via FB and have been following. It is extremely painful for me, because I have been through exactly the same thing that Manny is going through. I became Septic and also had a fungal infection, six times over the past 9 years. A couple of times it was due to an infected Broviac. The pain is unimaginable and there is no way to describe it. And, now the chest tube. Poor little guy! Beth, are they treating him with Amphotericin B? It's an anti-fungal. The dr.'s call Ampho-Terrible. That med has side-effects that are actually worse than the fungal infection itself. If he is getting that, he should be pre-medicated with IV Benadryl and IV Morphine or Demerol and Tylenol. About 15-25 minutes after the infusion begins, it causes a person to have severe shaking (Rigors), as the fever rises very high. Mine always went over 105 degrees. As a former Pediatric RN, I know that children are less likely to receive the same pain meds that an adult would be given. So stay on top of his pain level and insist that he be given the medications he needs. I will definitely continue to pray for Manny and for the rest of our family. I am Believing that them pulling that line is going to change things for him! Take care. ~ Jo