Fontan Recovery: Tube Replacement

I just feel sick. Maddie is going in to the OR this afternoon to have her left chest tube replaced.

X-ray selfie

The x-ray this morning (Colin and Maddie’s selfie picture above) showed that air and fluid had accumulated again in her left pleural cavity, and at a disturbing rate. Oxygen and medications were not going to be strong enough to solve the problem. The doctors plan to put in smaller tubes to allow the drainage to come out. The tubes will be in for an indefinite amount of time.

Another set-back. This is a hard blow. My heart aches for this little girl who is scared about another procedure. A little girl who is crying because she doesn’t want any more tubes in, she just wants to have zero. A tiny girl who is so hungry but can’t eat or drink until she wakes up from the anesthesia well after 4PM.

At least we were not already home, comfortable and lulled into thinking that all troubles were over when she suddenly became distressed with breathing issues or some other horrible symptom. Being here, stuck longer at the hospital, is exhausting mentally and physically, but we’re still in survival mode. We can maintain it a little longer.

She’ll go in around 2PM. Please pray for her speedy recovery. Let’s get this little girl home soon.

9 thoughts on “Fontan Recovery: Tube Replacement”

  1. Praying and praying some more! Praying for strength and healing for Maddie, praying for her care team, and praying for you to continue to be able to juggle the endless things you have going on right now!

    {{{HUGS}}} I love you dear friend!

    XOXO

  2. I agree that it is better that it surfaced now rather that next week when you are home and have to explain to her that she has to go back. If the tubes are smaller, hopefully she will tolerate them better, and possibly will be able to go home with them ‘in’.
    Hang in there, you can still see the light and the end of the tunnel, you just had to slow the train down a little.

  3. Funny coincidence… I believe Colin’s vest is the exact same material that my drysuit is made out of!

  4. Oh how I’ve been praying for all of you!
    Know that each and everyday my prayers are for you and that you will continue to be able to find strength…this is when we remember the poem footprints in the sand! It’s true, He will carry us!
    Xoxoxoxo

  5. My heart goes out for you and Colin and so much for sweet Maddie. I will keep you all close in prayer and that this will be the last procedure she has to endure. I am so sorry that she has had another set back but she will pull through quickly and this will resolve the lung issues !….. I hope you have a restful night..Take care of yourselves too !!

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