Getting worse before better

Post surgery is always rough, and Sam is no different.

Expected post surgery:

His puffiness would return – check

His oxygen requirements would go up – check

Pretty much everything would be out of whack – check

Last night he started puffing up again; his blood pressure was all over the place so they started him on dopamine again. His blood gases started deteriorating, but it’s mostly a metabolic issue.

What we didn’t expect though was for his oxygen to be in the 90s today with him barely satting in the 80s. He also had another event that lasted about 2 minutes and required chest compressions for 90 seconds. Thankfully his blood pulse remained strong and no epinephrine was required. They believe this was caused by the tube position, that it shifted and pushed up against the side of his trachea.

A chest xray shows a small effusion (excess fluid) on the right side of his lungs.

A cardiac echo was ordered to check his heart, to determine if the heart was causing problems. Nope. In fact, the stenosis now seems to be only in one vein. They don’t currently understand.

They wanted to limit his fluids to combat some of the swelling, but they can’t because of the blood gas and blood pressure issues. He’s also not peeing as much as they’d like. We’ve been in this position before where they have to load him up with fluids to fix certain things, then give him lasix to make him pee out the excess. I expect that next his kidneys will start acting up and he’ll needs a visit from the nephrologist.

I just keep telling myself, we have to take this huge step back in order to move forward.


16 thoughts on “Getting worse before better

  1. I know it’s so rough on him, poor dear, but also be sure to tell yourself: He’s done it before, he can do it again. He’s a very strong kid.

  2. Jennifer says:

    He’s such a fighter. I guess it’s like some other things. Have to goback to build up stronger and better than before. Hang in there all of you. Keep fighting. Keep inspiring. You are in my thoughts and prayers.

  3. Robbie was a friggin’ mess after his NICU surgery. I was stressed to the max. It took about 3 days for him to seem to get over the hump. I hope Sam is the same..
    Hanging out and hoping for great things in the next few days.

  4. Rebecca from FF says:

    Hang tough! Sam’s definitely the grand champion of defying expectations. The boy has got some moxy! He’s not going to let you down!! Keeping the prayers coming your way. You are an inspiration!!

  5. jessica q says:

    As you said it was a big step step forward with the surgery so some back peddling is to be to be expect . Sam seems to show us his strength and is an inspiration to me. Sending my prayers

  6. Cathy says:

    Sam is an amazing little baby who has defied ALL odds and I expect him to do the same this time. WOW what an amazing difference in his little belly……praying that the surgery will make everything else straighten out eventually and that this is just the start to his total healing and coming home!! You are an amazingly strong mama!!!

    God Bless,


  7. Polly says:

    Also thinking of you all, hoping and praying that Samuel’s recovery is going amazing. Keeping you all in my prayers …

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