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Liz Stokes

The BIG Move.

We made it! We finally met all the goals to move to the step down unit.a47fd180-5af0-4f62-8b72-5c0519d646f9

This opened up so many emotions for me. Carter was in the middle of withdrawals. We were moving to a room section where no one knew our baby. They had fresh out of orientation nurses on this floor, some of which had never even heard of Heterotaxy syndrome or knew what to do with a baby who had a single ventricle heart. It’s intimidating to say the very least.

Our worries were short lived as at 4a we were summoned back to the hospital. Carter’s saturations had plummeted and weren’t recovering. They had raised the wall oxygen up as high as they could on this floor but it wasn’t high enough for Carter. He was still struggling to breath and get the oxygen flowing in his body. By 6a we were back in the CICU settled. Not sure what’s going on but all signs point to the terminal blood clot. We wait for echo to show up they take their readings. They arrive and take an extra long time trying to work Carter’s heterotaxy ridden body but they get what they need and breath a sigh of release. No clot.

Looking back on this day I wish I could say that their first thought was true that the cause for the desaturations was due to aspirations but that wasn’t the case at all.

Back to the past. The solution for the aspirations is to move his ng tube to an nj tube. The first attempt was in the CICU room. With no luck. After multiple attempts, it was determined that he needed to go down to IR to have this tube placed. 45 minutes later he was back but we did learn something. His heterotaxy syndrome was why it was so difficult to place the tube. As soon as they were into the intestine they hit a 90* wall and the feeding tube refused to bend and turn. With a few extra tools and man power, they were able to make the turn and get the tube in place. Therefore warnings to take extra care were put into place. Extra tape…

With an NJ tube we’re looking at being stuck in the hospital for at least another month and a half. Just to monitor his feeding. Yay. Not.

July 15th. A day that’s forever stuck in my brain. Carter’s retractions began. He started struggling to breathe. Life in the CICU continues and things start to spiral out of control at this point. Carter’s saturations began dropping and he was still struggling to recover them. No one seemed to have an answer for why except blood clot in the shunt. They decided to move him to high flow to help him over this hump.

Carter continued to throw up and I brought it up to Rob if it wasn’t the infant formula he was on. He dismissed my thought then brought it up with the team. At this point we were desperate to get him to stop throwing up bile and to have his saturations return to happy place. The team switched his formula to Similac Alimentum and the vomiting ceased.

The team started Lovenox due to his aspirin resistance.

July 19th the Pain came in. They started to lower the high flow to switch Carter back to the wall. Carter was with his Dad wanting to be held all day which is a little out of the ordinary for him.

July 22nd Carter is still masking his symptoms. His saturations are still dropping, he’s angry, in pain, and yet the team was still talking of moving us to the floor to send us home. We had no idea at the time what was brewing or if something was brewing. I just know looking back I’m so thankful they never sent us home.

July 24th. We’re moved back to the cardiology floor. I am so nervous but thankful that we knew how to raise Carter’s saturations without having to remain in the CICU. Problem was none of the nurses on the floor would listen to us and do as we said. Overnight his saturations kept dropping to the 60’s. They gave him a blood transfusion and scheduled a heart cath for him. His first.

He was delayed in getting to the heart cath the next day which was frustrating for Rob because our baby was supposed to go back at 10 and it was early evening before they called for him. Our baby hadn’t eaten in nearing 24 hours. We were sent back to the CICU for recovery. All our worries were amplified when they weren’t able to extubate Carter from the ventilator. Then I noticed that Carter’s leg was ice cold. He has a pseudoaneurysm in the leg they performed the cath. Not good but fixable with more Heparyn, Lovenox, and aspirin… I’m calling it in today.

Dr. Bryant informed us that the shunt was not working and he needed to go back in and either patch it or replace it completely.

In other words, we’re starting over. Again. I’m scared.

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