There are no words to describe how agonizing today has been. I felt more raw fear today than I have for many months. I want everyone to be reassured that Gavin is stable, and we hope showing some small improvement from earlier today.

As I mentioned in a previous post, he was very stable this morning and showing good vitals. He was on 65% oxygen. We spent some quiet time talking to him, he was still sedated but I’m sure can still hear us. I told him that he will be fine and is getting better every day. I said the most powerful prayers I could and begged for his protection. Shortly the anesthesia team came and we discussed everything before they took Gavin to the OR.

Craig and I checked in in the Surgical waiting room and waited. I always surprise myself at how calm I can feel in these circumstances. I think both of us are delirious, and actually joked around a bit, which felt bizarre given the gravity of the situation. The surgery was over quickly and the doctor who performed it came to collect us and say that it went well. She got a good sample and made a small incision. I burst into tears and embraced her, which thankfully she was open to, otherwise it would’ve been awkward.

Relief coursed through me, but I should know that in these circumstances you have to measure your joy with a grain of salt. When Craig and I went back in after delivering the good news to Bubby and Da, we found respiratory therapists hovering around Bean’s bed and realized straightaway that his face had turned blue and sats were plunging. I cannot remember clearly what happened. We were in shock, trembling and trying to understand what had gone so very wrong.

Afterwards we were told that the trauma of surgery and sedation had weakened his breathing and even on 100% oxygen he couldn’t maintain his levels. It is a blur, in this situation there is nothing a parent can do but put their trust in the team to do their job, and turn to prayer. They explained to us that they would put him on a new type of ventilator, called an oscillating ventilator, which delivers puffs of air to the lungs, rather like panting. This is a better system of oxygen delivery and forces the lungs to expand more when they’ve become compressed. Somehow this whole explanation sunk in although I felt faint.

As soon as he was on the new machine, his sats began to rise, and a short time later his colour began to return to normal. Unfortunately, this machine requires the patient to be muscle relaxed, as otherwise the natural rhythm of the body fights against it. So my poor baby is heavily sedated and unable to move for the time being. His requirements stayed high for the rest of the day but his other vital numbers improved, including sats returning to 98.

A couple of hours ago, the team decided to turn him over on his stomach to allow the oscillator to more fully open the lungs. Not an easy job for a kid with a CVL, arterial line, femoral line, chest tube from surgery, NG tube, peripheral IV, catheter, monitor leads, sat probe and respiratory tube attached to him. It is really distressing to see but I’m trying not to dwell on that just now. It took two nurses, two doctors, and two RTs to turn him over. Once he was comfortable they began to turn his oxygen down to see how much they could decrease it. We were thrilled that this worked as they said in some cases it makes no difference. His needs went from 95% to 55% just by turning him over. A great improvement.

We are just in such a place of relief to have made it through today. I feel giddy. I know tomorrow will be full of new and unforeseen challenges, but the hurdles of today are over.

Pathology should have some results for us tomorrow. We are so thankful for the support and love we receive every day. We are so thankful for our Bean.

11 Responses to “Recovery”

  1. Phil, Amy Phoebe and Tom says:

    Keep on fighting little mate – everyone is sending every positive thought over to make sure pathology comes back with the best case scenario and allow the doctors to come up with a treatment quickly. (Amy: I sent an e-prayer online to St Jude- Im not Catholic but I’ll pray to whoever can help Gavin) Love Phil, Amy, Tom and Phoebe xoxo

  2. Aunt Karen says:

    I am also thankful for these dedicated professionals who keep coming up with new ways (to us, anyway)of making Gavin more comfortable. we’ll keep praying for Gavin, and we’re positive that the team can come up with some answers and solutions. Love, love…

  3. Suzi (gymnastics coach) says:

    Me and my little gymnasts are sending you and Gavin positive thoughts.

  4. Lori Avakian says:

    Sometimes in these situations we take what we can get and any good news seems like the best. I’m so happy to hear Gavin’s situation is improving. I hope to God that things just keep getting better. It would be a great Christmas gift. I will keep thinking of you all.

  5. Melanie says:

    Thank-you Erica for writing this. You are wonderful as is Craig. Look at the wonderful, strong, fighter boy you made!! – always prayers in my heart for you all
    Auntie Mel

  6. Thanks for taking precious time and energy each day to share your experience with us. I feel like I’ve learned so much about you and your family, love and hope, medicine and life. We all do our best to give ten times more back in positive and healing energies. Big giant wishes to the universe for today to be a good day of stabilization and recuperation for the magical bean.

  7. erin says:

    a palpable relief swept over the mamas last night when we got your text that Gavin was stable – we love you all so much and miss you being in our lives, but know that you will soon…gets some needed rest & Gavin, you get better, you hear!!!


  8. Mairi says:

    Relieved indeed, but not slowing our prayers. Thank-you so much for keeping us so closely updated.

  9. Susannah says:

    We love you three and are thinking about you constantly. Please try to stay strong and kiss that Sweet Little Gavin for us. Sending all the good healthy vibes we can. All our love.

  10. marina says:

    erica…just wanted to share that i am thinking of you and sending heartfelt healing wishes for the best of outcomes at every stage. i only just heard of your bean’s trials through some mutual mum friends and have been overcome by your monumental courage and heart in reading your blog. my little paloma was in rainbow songs with you and gavin when they were very wee…all love, marina

  11. Auntie Bev says:

    Sending powerful prayers, thoughts and visualizing Gavin’s guardian angel healing and watching over him as he sleeps. Stay strong and positive.

Leave a Reply