On day 7 of ECMO (8 days old), they decided to begin the process of getting Makenna off of ECMO. They turned the flow of the machine down to 150 and because they had been administering her medicine through the ECMO machine, they needed to do a procedure to install a PICC line in her leg. Now once the machine is gone they can still give her medicine through these lines. By this evening they had lowered her flow to 100. If she handled this setting all night, she would come off ECMO the next day!
Day 8 (10/18/13):
Makenna handled the flow of 100 well, so on day 8 of ECMO they decided she was ready to come off! However, one caveat that scared us all is that if they couldn't get her stable off of ECMO they would have to change out her whole ECMO circuit, which would mean going back to a flow of 300 and starting the whole process over again (aka going back several days in her recovery process). Up until this point the ECMO was not only doing 100% of the breathing for her, it was also adding oxygen to her blood and removing the carbon dioxide. She was getting daily blood transfusions, blood platelets, and plasma. The ECMO was also helping to regulating her temperature by warming the blood. We were hopeful that her body could handle doing these things on its own, but we knew it was asking a lot of her little body, especially since it wasn't able to do these things just 7 days earlier!
At about 12pm the whole crew arrived to take her off. They began by clamping the line so that the flow would stop and then they watched her stats to see if she could handle it. The whole process only took about half an hour, but when you are sitting in the waiting room that feels like forever! After Makenna's line had been clamped for a few minutes her stats dropped and they determined that her lungs weren't able to handle being off the machine just yet. They decided to give her Viagra for a few hours and see if that would be enough to improve her lung function. We were definitely disappointed that she couldn't come off, ECMO is a scary machine that can cause scary complications, every day she is on it there is a chance something could go terribly wrong. We knew that there is a full-time ECMO tech sitting there watching the machine 24 hours a day to make sure nothing happens, but unfortunately even with the tech, some things are just out of there control. Also, we were worried that she may not be able to come off the machine at all and would need to have surgery while on ECMO. This would be extra risky since the machine uses heprin to thin her blood, surgery while on blood thinners brings extra risks!
At 5:30pm after a few hours of rest and Viagra they tried again. This involved another long stressful wait, but unfortunately in the end she just wasn't ready. Her body wasn't getting rid of enough carbon dioxide, so they had to put her back on the machine. They upped the flow back to 200 and decided to try one more time in the morning. In the meantime they gave her cortisone steroid shots to help give her lungs a little added support. If these things didn't work, they would have to change the circuit and up the flow to 300.
Day 9 (10/19/13):
At 10:00am they began their third attempt to get her off of ECMO. Rex and I sat nervously in the waiting room hoping and praying that the third time would be the charm. Rex (a computer programmer) even wore what we hoped would be a lucky shirt. It said "If at first you don't succeed, try and try again!" in programmer speak. :)
After a long 1 hour wait, they finally said we could go back. Thankfully when we got back there our beautiful baby girl was finally off of ECMO. Dr. Kays was still in there and we were able to talk to him about her progress. He seemed pleased with how she was doing, but he was still slightly concerned about he carbon dioxide levels and blood pressure. He said they would watch her for 48 hours to give her body a chance to adjust to its new workload and for the heprin to work its way out of her blood. If she is still stable on Monday he will do the repair surgery; however, there is a chance that the next 48 hours will prove too much for her and she could go back on ECMO. They left the cannulas in her neck just incase, but we are hoping and praying that they don't have to use them again!
Either way, for today we were very happy to see them pack the ECMO into a biohazard box so that we could officially say BYE-BYE ECMO!
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