It seems I am not allowed in this situation to say, “he’s getting better”. Of course I am forced to bitterly eat those words just 12 hours later.

Today we started off strong with Gavin breathing on his own and doing fairly well. But a few things plagued him throughout the day. We learned early on that there is some blood in his lungs and we have no idea why. He was sedated but less so than yesterday and often moved trying to pull out his tube. His blood pressure began to go very high and stayed for the rest of the day, and then oxygen levels went low, then resp rate went up. The RTs made a few changes, the fellow popped his head in, but I felt like no one was listening to us to solve these many problems.

Finally this evening we pinned the fellow down and got some answers about meds, platelets and ventilation. Unfortunately, solving all the problems for Gavin meant putting him back on the ventilator and immobilizing him again. He is peaceful now but it took many hours of fine-tuning doses and playing with settings. We hope he doesn’t have to go back on the oscillator, but he may tonight.

I have felt very negative and tearful today. I’m so disappointed that we’ve taken such a step backwards. I have a hard time focussing right now and can only see how grim the situation is. This has been going on for more than three weeks and there is no end in sight. We certainly will be staying in the ICU quite awhile longer.

12 Responses to “Setback”

  1. hmmm what a bitter set back. there aren’t a whole lot of words but we’re here with you and somehow this is part of the road to recovery even if it isn’t apparent to us right now tonight.

  2. Amy Zammit says:

    He has to get better soon, we just know it. You must be exhausted, but we are here thinking of you all and sending positive energy to Gavin’s lungs to strengthen and turn the corner needed to move forward. Love Amy, Phil,Phoebe and Tom xoxo

  3. Uncle Graham says:

    Erica: Hange in.

    We are praying for him that he will improve and will be able to come home for Christmas.

    Hope he is well enough on Thursday as Bev and I are planing to visit Gavin.

    All our love and prayers.

    Uncle Graham

  4. Melanie says:

    He will be better soon – you have to think, eat, breathe it – I know that you are doing all that you can. He just needs to rest more that’s all – he’s been through so much.

    Love you all – always thinking of Gavin!

  5. Cherie says:

    You have every right in the world to feel as you are feeling. I wish there was more that we could all do to make Gavin better. Try to visualize him healthy and at home playing with you and his Dad. I can’t begin to imagine how hard it is to be positive in you situation. We are sending vibes of strength and healing to you all.

  6. Lisa says:

    When you have no strength, don’t worry. There are so many of us out here with our thoughts and prayers on Gavin that your ‘off day’ won’t effect the whole. There are so many out here sending love that you can’t even imagine. I know of four elderly Portuguese women that are including Gavin in their prayers every day. Fee the love!!

  7. Aunt Karen says:

    You have every right to feel negative and tired and frustrated and angry and sad. This struggle has been going on so long and it must seem like a living hell for you and your family, not to mention our little Gavinator.
    We’re not there in person, but try to imagine all the people you know who are praying for Gavin, right in the room, crowded in, saying nothing, just surrounding Gavin’s bed with their aura of hope. These people will hold you up, will dry your tears and will lead Gavin to safety. Sending love and special prayers…

  8. I have decided that instead of praying today I am going to give the universe %$@&, give it a serious hard time – enough is enough. I’m sorry it’s got so difficult, you must be so tired. We’re sending love and energy your way. I’ll try to bring something fortifying for you tomorrow and by then he’ll be back on the healing track.

  9. Amanda says:

    Erica- I agree with all your familia and friends. Your amazing strength and love for Gavin are being multiplied by everyone who loves him and your family. We are all sending you our strength and prayers and know that you have all of us to help Gavin heal. You are constantly in our thoughtsxoxo

  10. Mairi says:

    Calling in strength & healing for Gavin, the others wee ones & all their parents.

  11. Murray family says:

    Just received an email from Kyla. Although we have never met you or Gavin, my family is sending our most positive thoughts your way and wishing you all strength. I looked through the pictures that were included in the email…I must say…he is one of the cutest little boys I have ever seen. Thinking of you and your family

  12. Sue Cullain says:

    Kyla (my daughter) has told us all about the struggle this poor little Angel is going through. My heart just breaks for him and his family. We are all sending special wishes and prayers to a favorite Saint (Brother Andre – who was just canonized – known for healing the sick). Great faith in him. We will continue to send positive thoughts, love and prayers for Gavin until we hear he is safe and sound at home. Stay strong.

    Sue & Mick Cullain

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