Friday, June 20th - Bleeding Issues

Kathy and I ended up staying pretty late last night to watch over our beautiful baby. This caused us to get a little later start than normal.

As we were walking into Children's Mercy my cell phone rang, it was Dr. H. (FYI - Anytime my caller ID shows "Children's Mercy Hospital" my heart stops.) Dr. H informs me that Kinley's BP number and urine output did not improve overnight and now they are having a hard time feeling Kinley's pulse in her legs. The doctors have already met and they feel these problems are probably being caused by blood leaking and pooling in Kinley's abdomen. Extra blood in the abdomen puts pressure on the veins returning from the legs and stops that blood from returning to the heart. This would cause the pulse in her legs to be weak and would also explain why she is not producing urine. The kidneys cannot produce urine if they are not receiving much blood. As I am speaking with Dr. H, Pablo (a surgeon) is in with Kinley and he is putting in an abdomen drain.

When Kathy and I arrive at the NICU we are shown to the same PCU room we were in yesterday to wait. We cannot see Kinley yet since they are still working on her and they need to keep the room sterile. We end up waiting for close to 50 minutes before we hear anything. It felt like an eternity and our worries grew more with each passing minute. Dr. H was the first to come by our PCU room. She lets us know that everything went well and Kinley is looking much better. The new abdominal drain had already removed 300 mL (10 ounces) of blood. (If you are not sure how much that is you may want to measure it out when you get home.) Kinley's abdomen is already smaller and the color and pulse is returning to her legs. On a different note, this new found bleeding means that we need to move faster on getting Kinley off of ECMO. The new plan will be to test Kinley this afternoon and see if she can support herself by doing all of her own gas exchange. Before we can see Kinley the nurses will need to get her cleaned up.

Our next visitor is Dr. M. She reiterates a lot to the information Dr. H told us and gives us a few more details on why Kinley needs to come off of ECMO. The main reason is still the amount of bleeding, but Dr. M feels that Kinley's heart needs more support right now than her lungs. Kinley's set up on ECMO only helps her lungs and Dr. M can support Kinley's heart better if she is off of ECMO. They will let Kinley rest for about an hour and then around noon they will start to lower the support of the ECMO machine. If Kinley can tolerate supporting herself they will clamp and cut her ECMO tubes. This will allow the heparin levels in her body to drop and her blood will begin to clot.

We return to Kinley's bedside and see that she looks very similar to when we left her. The few changes are the new abdominal drain and her skin is pretty pale, but we have been assured that her pinkness will return as they work to replace the blood she is losing. This is kind of sad to say, but it means so much. Kinley is peeing again. She has catheter since she is paralyzed (by drugs) and we finally have urine output. There is almost constant motion in the operating room/Kinley's room as Dr. M, Dr. H and multiple nurses work to stay on top of Kinley's blood loss and also get her prepared to come off of ECMO. Around noon they begin to lower Kinley's ECMO support.

Kinley has handled the lower support pretty well and they decide to cap off the oxygen that is being put into the ECMO machine. Kinley's oxygen saturation levels are still good, but her CO2 levels are going up a bit. It looks like Kinley will need to be moved to the high frequency ventilator because it helps more at removing excess CO2. They have discovered that Kinley is leaking blood around her abdominal drain and this is causing her BP to drop. Now that Kinley is losing more blood than thought before, she has to come off of ECMO soon. A perfusionist will be here at 2:30 pm to cut her ECMO tubes and the surgeons will be here at 3:00 pm to remove the tubes from her neck.

We will try to post an update later today when things have settled down.