Good News, Bad News

I don’t know how to explain today. Many ups and downs as usual but overall we are all happy that Bean’s oxygen requirements overnight came down to 45%. Clearly, he enjoyed sleeping on his tummy and it helped him tremendously.

We spent most of the day watching Bean being gently vibrated by the oscillator. There is nothing really to do in the ICU because there is no child-care to be done. Occasionally we wipe his mouth or moisturize his legs but that’s about it. Lots of time to chat with the nurse and ask questions, which is helpful.

I missed morning rounds because of an ill-timed coffee run, so Craig represented us there. Da came for a visit and told Gavin some stories. Later on Bubby and Auntie came to visit too.

We were waiting for most of the day to hear the results of the biopsy from
pathology. Finally, our staff doctor came to talk to us in the late afternoon. The results are that there are no results. They expected to find some damage to the blood vessels, indicative of vasculitis or VOD, but they found none. Also no sign of infection of any kind. Although everyone insists that the biopsy was very beneficial, we can’t help but feel a bit at a loss. There are some theories as to what is plaguing Gavin but none of them are concrete.

Our next option is to go ahead with a course of high-dose steroids, to see if this is helpful in reducing the inflammation that clearly exists in his lungs. We’ve been told that this may work or not. We can only hope and pray that it will. He will receive these steroids over the next few days, and will be closely monitored for side effects.

In other difficult news, we discovered this evening after turning him onto his back again that an air pocket has developed in the lung where they did the surgery. A tube was left in there to prevent this from happening, but apparently it is in the wrong position to do much good. Wonderful! Gavin has had four chest x-rays today as various things have been checked out for positioning. The most recent one showed an improvement in the air pocket (called a pneumothorax) so we may not have to take any drastic action just yet. Drastic action would be another chest tube to fix it.

Today was not entirely gloomy though. Gavin’s oxygen needs came down enough that it was thought safe to put him back on the regular ventilator. As we speak he is sleeping quietly without the constant noise of the oscillator. We are hoping to see yet another improvement tomorrow, and praying that no one calls us to go downstairs tonight.

This course of treatment must work. It must work. Please pray that this situation begins to resolve by the end of the weekend. It is so very terrible to see your child lying helpless in a bed and covered in tubes.

5 Responses to “Good News, Bad News”

  1. Phil, Amy Phoebe and Tom says:

    THANK GOD there was no sign of lung damage. How frustrating that you don’t know the exact cause of what is wrong, but perhaps it will correct as he gets stronger and recovers from the last round of chemo. Fingers crossed the steroids work for him too. We will say a big Christmas prayer wish for Gavin to be well and eating something (even if its just soup) by Christmas. You guys deserve a break. We are thinking about you guys every day and every time we look at our kids we think about what you are going through.
    Love Amy, Phil, Phoebe and Tom xoxo

  2. Melanie Parkes says:

    I pray as always for this to come to an end – quiet and uneventful, Gavin feeling stronger every day that passes and you and Craig feel less angst at the same time. This will come, I just know it – I feel it – long distance imagery and reiki type issuances from me – always with my Gavin in mind. I envision in him sunny but cool Florida, where I took the picture that is my profile pic. He is happy, healthy and oh so indignant that I, would ever assume to have breakfast with him one day. I remember that day, as clear as any day in my past, because he was so cute, and so accepting after I told him – well I am going to eat too at the table – and he did and I did – together!

    That is what I am holding – for me – the ultimate Gavin and Auntie Melanie moment. He will come through this – I feel it in my bones – I love you all! xoxoxo – Always Prayers, Always Love
    Auntie Melanie

  3. Mairi says:

    In prayer.

  4. I can’t help but feel that no news was good news this time. At least some bad things were ruled out, and now he is breathing better and getting more oxygen and there is a course of treatment that may, no WILL, help him get even better. A really rough few days it has been, but I will spend the weekend visualizing Gavin breathing more easily, the team removing tubes and you hugging your lil man.

  5. Amanda says:

    my dear amiga
    we are praying for Gavin to regain strength and clear breathing with each new day. We just sent him a special song for when he feels up to watching and listening.
    love always Amanda xoxo

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