Saturday, June 21st - Everything is fine, sorry for the late post

Well, Kinley's first night off of ECMO went as well as we could have hoped for. Nurse Kathy did a great job taking care of Kinley. It was pretty quiet for the most part, so I was able to get some sleep. We were lucky enough to be able to stay in our PCU room overnight so I didn't have to leave the hospital, or even the NICU, to get some rest. Kevin on the other hand did not sleep. He stayed with Kinley, at her bedside, until 6:30 am and only after I came back from my full 4 hours of sleep did Kevin step out to get some much needed rest of his own. He is such a wonderful dad and I am sure Kinley already knows how lucky she is to have a dad like Kevin.

Overnight Kinley was weaned on the amount of oxygen that she received from the vent. At one point during the night she was down to 60%, but her oxygen saturation got too low (92%, not bad, but not over 95% like the doctors want). When I came back to Kinley's room in the morning she was receiving 78% oxygen from the vent and was doing good keeping her oxygen saturation up. Kinley was also doing a good job of keeping her CO2 down and when her 9:00 am labs were drawn her CO2 was at 52 (we want this to be in the 50's or low 60's).

A little after 9:00 am Dr. M came by to round on Kinley. Overall she was pleased with how Kinley is doing. She decided that Kinley's bleeding is much, much better, so she is going to stop the med that was paralyzing Kinley and let her move a little again. Also, we are going to start to wean Kinley's BP meds slowly since her BP is starting to normalize again. (I guess she has never really had "normal" BP, she has been at one extreme or the other.) The plan for today and into early next week is to monitor Kinley's oxygen saturation and continue to wean down the percentage of oxygen from the vent. We are also going to monitor CO2 and try to control that with vent settings. Kinley still has her belly button IV tubes that the nurses are using to give meds and blood products. Normally these are taken out around 9 days of life since that is typically when the belly button scab falls off. Obviously Kinley is a little over 9 days old by now, but since she was on ECMO everyone was hesitant to change out those tubes and put new ones in. Now that she is off of ECMO, and the heparin, she really needs new tubes placed in a different part of her body. We are going to wait until Monday when someone can come to insert new tubes and then pull out the belly button tubes once and for all. One bit of information that I really got excited about was that Dr. M said once Kinley's belly button tubes are out and she is off BP meds she can start feeding!! (For those of you that don't know, Kinley has plenty of milk at home that I have been collecting for her.) She will not be able to eat normally at first. She will need to have a feeding tube to deliver breast milk directly into her stomach, but at least she will finally get to use her stomach and bowels. Up until this point she has been getting her nutrition via IV.

At around 3:30 pm we got the results from the most recent blood gas test. Kinley's O2 is really good, but her CO2 is rising and was at 72, which is too high. Dr. M and Kinley's new neonatal nurse practitioner (NNP) Patti ordered an x-ray to see what was going on with Kinley's lungs. The upper portion of both lungs were a little collapsed, so they decided to change some of Kinley's vent settings some more to try and open those parts of the lungs.

Later on around 5:30 pm we get the next set of blood gas test results. Kinley's O2 remains good and her CO2 is down back to 62. Yeah Kinley! I guess the new vent settings are working. With Kinley looking pretty good, Kevin and I left around 6:30 pm to get a bite to eat.

After shift change we return to see Kinley, and nurse Kathy is back taking care of her. Kinley has maintained good O2 and CO2 while we were at dinner, but just because it is Kinley and things can't go too smoothly, now her BP is back on the rise. Kinley was on dopamine to raise her blood pressure, but that has been stopped and her blood pressure is still on the high end. Nurse Kathy changed Kinley's diaper, suctioned her breathing tube and gave her an extra round of pain and sedation meds to see if any of that would help to lower her BP. Dr. H was thinking that we may even need to start Kinley back on hydralazine to lower her blood pressure. Kinley sure likes to keep everyone on their toes.