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No News is Good News: July 15, 2012

July 16, 2012

Not much to report today, and as they say “no news is good news”. Oliver had a very boring day. He got his arterial line put back in (it blew yesterday), he was thisclose to getting it in his groin but in the end they got it in his left hand. Which leaves his right hand completely free for snuggles! His mean airway pressure got put down a bit but they’re really in no hurry to switch him over until his heart is better. So we wait. We are really learning patience. It is such a struggle every day to watch him lie there unrepaired. The hard part hasn’t even started yet. After his surgery he will get so much sicker. But that is how he will get better and it is difficult to not want to rush him to the OR. But I know the doctors really do want him to have the best result possible. And if he reacted so badly to a day of handling he clearly isn’t ready to be cut open and have his organs all rearranged.

Today two people said that they understood that Oliver has 1/3 of a lung but he still has that whole other one. I hated bursting their bubbles but there is no other one. All he has is 1/3 of one lung. That’s it. They can see that there is some lung tissue on the left but they won’t know how much til they rearrange him. And it’s likely not very much. I just wanted to make sure everyone understood. Because I could see both of their hearts breaking when I told them and it was so sad. Lungs keep growing until you’re 9. His will never catch up all the way but he can try. It’s just that for now, he’s got a pretty rough go. But he’s doing his very best. He’s fighting so hard and he is incredible. Keep praying for that little heart that’s stolen mine! Xo

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Oliver got himself nice & comfy

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7 Comments
  1. Continuing to pray for Oliver. Presurgery days are filled with ups and downs and lots of waiting. It is so hard not to get ahead of yourseld and wonder how he will do in surgery, how will he do right after, and then after that. I remember getting ahead of myself and my guy one day and his nurse said to me “we really have to take it one breath at a time and slow down to his pace”…words to live by with all our children, not just the ill ones. CDH is so complicated and there are many mysteries like why some with virtually no lungs adapt and do well and some with lots of lung volume struggle. I know the doctors explained to us that more important than the volume was how well they functioned…yet another question mark at Oliver’s stage. Hoping for more boring days ahead and that the pressures that they would like to see go down for surgery go down.

  2. Alex, I wish there was something worthwhile I could write, but all I can do is marvel at your strength and wish the very best outcome possible for your little man. ❤

  3. Nadya permalink

    I think about Oliver every single day…all day, I check your posts to see how he is doing. Even though I don’t know you guys, I feel that I’m already in love with little Ollie.
    Alex he will be fine and he’s gonna make it…you’ll just have to be patient. I know it’s easier said than done, but please be strong. Look how incredibly well he is doing considering he has not much of a lung, but lungs they grow and Oliver’s lungs will grow…you’ll see. I have a very strong feeling that Ollie will do just fine…my intuition never really fails me. I send positive thoughts to him constantly. With all my heart I wish him the soonest recovery after the surgery and for you guys to have lots of strength to go through this.

  4. Praying for those sweet little lungs. Even though he doesn’t have much lung tissue, they’re functioning well enough for him to be hanging out on the ventilator (as opposed to ECMO), so that’s awesome! I know you said they don’t do ECMO much at your hospital, but if he *really* needed it, I’m sure he’d be on it, ya know? And even though he hasn’t had his repair yet, his little body is still making some progress. He’ll let them know when he’s ready. Hang in there until then–after surgery is when Bonnie turned the corner in a big way. Praying that Oliver does the same!

    • Leslie, Canadian protocols for CDH babies are different than U.S. They use more nitric oxide, oscillator, milrinone, dopamine and less ECMO. But I agree with you that the lung tissue must be more than predicted for him to be ventilated at all. The surgery will tell… and that IS coming soon, Alex. Hang in there.
      Corinne (in Calgary)
      Mama to Samuel, lcdh, Feb1/11
      http://www.samuelslight.blogspot.com

  5. Rooting for the little guy. I think surgery when he is ready will make the recovery so much quicker. I cannot but imagine how hard everyday is. Go Oliver Go.

  6. Before Baxter was born our amazing surgeon told us about some of the CDH babies he looked after that have now grown up. One was a long-distance runner, another was a saxophonist, and another a pro hockey player. They certainly got the best out of their lungs! Baxter has also proven that a little lung-stuntedness doesn’t stop yelling, screaming, running or jumping off innaporpriately high pieces of furniture. Go Oliver!

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