Sisyphean

We received some sad news yesterday from the eye surgeon. Benjamin’s eyes have stopped progressing and he will need additional surgery in order to try to save any vision. For those keeping score at home, we are now up to Plan D. The problem is that his retinas are not unfolding and reattaching as they should. This might be because of scarring  that is forming (though he can’t see any) or because of stiffness of his retina. the surgeon wants to operate again and see if he can tell why the retinas are not improving. If there is scarring he can try to remove it, or he may just re-inject gas bubbles to help unfold the retinas. His also said his eyes are much smaller due than they should be at this point due to the disease – making the surgery more difficult.

“So when is this surgery?”, you might ask. Well since they put Ben back on CPAP after his last long run of being off, he hasn’t been very stable staying off for very long and they are trying  more regimented on/off schedule. The surgeon wanted to discuss with the primary doctors when is a smart time to do this (the timing isn’t super critical it seems). But then more stuff came up…

Benjamin had an x-ray that showed some disease in his bones that could point to a bone infection. They ran 6 more x-rays and every test they could. The x-rays show that his bones are not smooth and regular on the outside as they should be. His blood work does not show any sign of infection though and we are waiting on cultures to come back in a few days to see if anything grew. Then he ran a fever this morning (it was gone next time they checked though) and that added fuel to the fire so they have already decided to start him on antibiotics again. They also did an abdominal ultrasound and found possible fungal balls in his kidneys again. If he ends up being positive for a fungal infection this could mean an additional 6-12 weeks of being in the NICU.

Amy and I hope they are over-reacting, but it’s better to be cautious. We just hope everything comes out clean, he gets more stable and they can do the surgery so we can get back on track pushing this boulder up the hill.

Benjamin doesn't let it bring him down... besides, Tantalus had it worse than Sisyphus

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12 thoughts on “Sisyphean

  1. Sending you hugs from Montana. I’ll keep Benjamin in my prayers. I hope you’ll get some good news when his labs come back.

  2. You guys are real troopers. We are right behind you giving you all the support possible. Benjamin is a fighter–he WILL WIN. I know it’s hard, but try to hang in there. BTW, this latest picture of Benjamin is the best yet. He’s adorable!

  3. I know is hard to be in your possition guys but Benjamin showed so much strenght since he born, he’s just a fighter…. with ur help He
    will win this fight… From the bottom of my heart I wish Benjamin to get well soon…
    Pd. Rebecca is waiting for him to have a little walk around Central Park.. =P

  4. That is some boulder you are pushing! Keep going!

  5. Wish I could hold you guys and kiss you and make all this better! Love you!

  6. Well, crap. I was really hoping for better (more optimistic? more definite?) news for you all by now. As always, he’s in my thoughts and we’re praying for a breakthrough soon.

  7. Poo…I know y’all are so ready for him to come home! We are thinking about you and please do let us know if you need anything at all. My personal goal for you as that he at least beats Sanjay home. Tell that boy to beat Sanjay home. Boys like races, right? Go Benjamin!

  8. This is one tough kid! He’s loved by the Spiro’s, in case there was any doubt. And in this picture he looks like Joe to me but sometimes he looks more like Amy, I can’t decide.

  9. Amy and Joe and sweet sweet Ben— I send you warmest waves of support from us down here in Virginia. I know he is the luckiest boy to have such great parents who make such amazing decisions for him day in and day out. I know we all wish we could lend you some strength as you must be getting awfully tired…. Know we love you, and think about you everyday. He’ll get there.

  10. I am so sorry this is such a hard road for all of you. We think of you daily and hope for the best. Give him lots of snuggles!

  11. Ben is one tough kid and he will come through everything I am sure. I know it has been a long road for all of you, it will be over soon and you will not have to go back to the hospital anymore. Just hang in there and think of that. Everything will get fixed and cleared up and then you will take your wonderful little baby home. Our prayers as always are with all of you. Tell Ben GACA says Hi and give him a kiss for me.

  12. We pray for Ben every night and will keep on doing so. I am cheering you three on every day. Sending hope for strength to you all.

    Ps, he’s awfully cute with that grin of his!! 🙂

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