Friday, May 30th - ECMO surgery 1 & 2

It is 1:00 am and we are heading back to our PCU room, from the lactation room, when Dr. H finds us and lets us know that surgery has begun and should last 45 minutes to one hour. We wait in our room until 1:40 am when Dr. H and the surgeon, Dr. M, come in to let us know that surgery went well and Kinley is officially on ECMO. They also let us know that we should be able to see Kinley soon. Dr. H stays with us to talk about how Kinley's treatment will change now that she is on ECMO.

Kinley's new ECMO treatment: She has been moved from the high frequency ventilator to the conventional ventilator. This will allow Kinley's lungs to rest more. She is no longer receiving NO2 and they also took away her trial blood gas tester. Her BP medications will be weaned and most likely discontinued because the ECMO machine will maintain her BP. She will receive a head ultrasound every day for 5 days to check for bleeding in her brain. This is because Kinley has to be on heparin (a blood thinner) to make sure that no clots form in the ECMO machine. After the first 5 days, the head ultrasounds will done every Monday, Wednesday and Friday until she is off ECMO. It will be at least one week before the surgeons try to determine a date for Kinley's diaphragm repair surgery. They can do the diaphragm repair surgery while Kinley is on ECMO, but ideally they will want to wait for her to be off of ECMO. The reason for this is due to the heparin (blood thinner) that Kinley has to be on for ECMO. Heparin greatly decreases your blood's ability to clot and that is a huge concern if they have to do surgery while she is on ECMO. Only after Kinley has been on ECMO for two weeks will they consider doing her repair surgery while she is still on ECMO. The maximum time for Kinley to be on ECMO is three weeks.

If there is anything positive about Kinley going on ECMO, it is that she will be more stable and therefore less sedated. This means that Kinley should be more awake and that we will be able to touch her more.

At 2:40 am Noel, Kinley's night nurse, came to let us know that they are almost ready for us to see Kinley.

At 4:00 am we get to see our baby girl again. Kinley looks good, but it is hard to see her tiny body hooked up to the ECMO machine and all of its tubes. Due to going through surgery her morphine and versed are both up to 40. Her BP medications, both dopamine and dobutamine, have been turned off completely. As informed by Dr. H, both the high frequency ventilator and NO2 machine are gone. Her only new machine, other than ECMO, is her conventional ventilator. It is currently set at 30% oxygen. The pressure from the ventilator is just enough to keep her lungs from collapsing. This is to allow her lungs to rest as much as possible. Unlike the high frequency ventilator, this ventilator allows her to breath on her own if she needs to.

4:15 am, we are about to fall over from exhaustion and the stress we have been feeling the past 6 hours. We head back to our room for some sleep knowing that Kinley remains in the best care possible.

At 10:00 am, after a little shut eye, we head back in to see Kinley. Very quickly we hear some news that does not lighten our spirits. Apparently one of the tubes in Kinley's neck got a kink in it and now it needs to either be adjusted or replaced. It sounds like the surgery team will be back around 1:00 pm to perform the procedure/surgery. We can see that something needs to be done by the way they have Kinley situated on her bed. To get around the kink for now, they have Kinley's head positioned at an odd angle that does not look like it would be comfortable for anyone. They have also given her an extra dose of morphine and versed to make sure that Kinley is not too uncomfortable. Kinley has a new medication, it is milrinone, and it helps her heart to circulate blood while she is on ECMO. I don't think this is true, but Kinley might have done all of this for the attention. She will now have 2 nurses per shift. One will take care of Kinley and the other will take care of the ECMO machine.

I (Kevin) received a call from my parents around 10:20 am. You may have been wondering why you have not read much about my parents. That is because they are in Europe (a trip they had planned prior to finding out that they were going to be grandparents). They were scheduled to be back before Kinley's due date, but once again Kinley had different plans. Don't worry, they have been well informed via phone, e-mail and the blog. They will be back soon and can't wait to see Kinley in person.

By 2:30 pm, Kinley still has not been seen by the surgical team to fix the kinked tube so we let the nurses know that we are going to head home to clean up and pack a bag for the night. Aunt Kate (Kevin's sister) has gotten us a room for the night, at the Hyatt across the street. That will be a much shorter drive to see Kinley and hopefully we will be able to sleep better knowing that we are close by.

While at home, around 3:50 pm, we receive a phone call from Children's Mercy. Apparently one of us has to be present to give consent for the surgical team to fix Kinley's kinked tube. And we cannot give a verbal consent over the phone because it is considered an elective procedure/surgery. (It turns out that this was simply a miscommunication between the hospital and us. We never would have left if we knew they still needed us there) Between the two of us, Kathy is the only one close to being prepared to leave. Luckily our good friend Kim is there and can get Kathy off to meet her parents who can take her the rest of the way to Children's Mercy.

Kathy arrived at Children's Mercy at 4:45 pm to give our consent. The surgical team and nurses were all in place when Kathy arrived and began to work immediately.

At 6:00pm, we found out that the surgery went well and that they had to replace the entire tube. Poor Kinley with her double surgeries in 17 hours time.

At 6:40 pm, Kathy and I are allowed back to see Kinley, but we soon have to leave for shift change. Before we leave the nurse (Dot) shows us the kinked tube that Kinley had been dealing with for the better portion of a day.

After the shift change we return to meet Kathy and Carrie, Kinley's night nurses. Kathy (the nurse) attempts to give us a run down of the ECMO machine and how it works, but unfortunately we are still to tired to retain everything. Since Kinley was in a odd position most of the day due to her kinked tube, Kathy (the nurse) and Carrie spend about 40 minutes trying to adjust Kinley's position to make her more comfortable and maximize the flow of the ECMO machine. The doctors want Kinley's ECMO flow to be 0.39 - 0.40 liters/minute, but the best that we can get tonight is 0.36 - 0.37 L/min. More concerning is that Kinley has begun to bleed/ooze from her neck where the ECMO tubes go in. For now the nurses have addressed her bleeding with gauze. They also decided to stop trying to reposition Kinley for fear of making the bleed worse. Kathy and I remained with Kinley until everyone felt that she was pretty stable and then headed to the Hyatt to try and get the sleep that we missed last night.