Fine Tuning

We are getting into the bad habit of staying with Elli until the wee hours of the morning. Last night we stayed until almost 3. Elli has been pretty up and down. She is either oxygenating or ventilating but not both for some reason. Her gases have looked pretty much the same, not horrible but not great.

This morning Brian and I went to the Community Blood Center here in Kansas City so Brian could give blood. He has been wanting to do this for the last week or so since Elli has been relying so much on blood he wanted to give back ( I am not able to give for another 4 weeks, but plan to then).

The Doctors decided that Elli needed to have her Nitric Oxide turned up to 20 because she was not oxygenating well. Dr. K thinks that her pulmonary hypertension is back. This is due to the fact that during development, her lungs did not form correctly. Because she has only one "true" lung, the amount of blood flow that normally goes to both lung is forced into the right and very tiny left lung. It is basically like trying to fit 20 gallons of water into a 10 gallon tank. The other reason Dr. K thinks that Elli might not be oxygenating as well is that she is having an inflammatory response to the amount of blood that is collecting in her chest. This causes increased release of white blood cells from the bone marrow that are trying to restore harmony in her body (since there was intestines in the space, the body wants to fill it with something, and it happens to be blood). They are hoping by tweaking the vent settings, keeping Elli calm (aka sedated) and by starting steroids that they will be able to reduce some of the hypertension and allow her lungs to relax a little more thus enabling her to have better oxygen exchange.

We are really hoping that they figure out what Elli likes because this afternoon her oxygen saturation ( the percent of red blood cells carrying oxygen) was down to 82% and hung out there for almost an hour (no.. we were not breathing during this time) Finally they adjusted the vent a little and her saturations have slowly came back up as high as 92% but they are hanging out around 89-90%, but Dr. K seems to be thinking that it is acceptable according to her blood gases. As far as her ventilation goes, her CO2 levels have been looking good, as well as her blood pH, blood pressure and urine output (all good signs).

Shoot.. one of resident pediatricians just came in and told us a little bit of news we didn't want to hear. The surgeons and Dr. K had been discussing the possibility of having surgery tomorrow to reduce Elli's slio and either close the abdominal muscle or put in a patch that goes on the skin to give a little more room for abdominal expansion. Honestly Brian and I don't think that Elli is ready for another surgery so soon considering that she really hasn't stabilized from coming off ECMO, we thought that Dr. K was on the same page, but I guess now they are going to do an "exploratory" surgery tomorrow around 1 ( don't hold your breath, I would be surprised if it even gets done tomorrow before 5). Either way the surgery team wants to go in and evaluate the silo, possibly irrigate some of the blood out of the abdomen and decide what the next step should be. We are hoping that if anything they use a patch to allow for more room in the abdomen and after Elli grows a little more, gets more stable, and her lungs have time to adjust to the workload, that they can go back in and do the final closure. The resident pediatrician said that they were going to do it in the OR, but hopefully they will be able to do the "exploratory" part here in the surgical suite so they don't have to put Elli through a big move. It's just hard to believe that they think Elli is ready for yet another surgery, sedation, and possibly the risk of more bleeding. It is all so scary, we just wish that she could have more time to rest between these huge procedures on such a little baby.

As far as tests today, Elli had another chest x-ray, which Dr. K thought actually looked better than yesterday. They have determined that the clouded area on the upper lobe of her right lung is just a shadow from the left-over hematoma from the ECMO cannulas that were in her neck. Dr. K also thought that both the right and left lung were well expanded, and the left a little more than before. Also she had another ECHO of her heart, and the results were about the same as they had been on the previous. The ECHO showed a slightly smaller left ventricle (the part of the heart that pumps blood to the body) and a higher pressure in her right ventricle (the part of the heart that pumps de-oxygenated blood to the lungs where it is supposed to pick up oxygen to take to the rest of the body) Well that is where the pulmonary hypertension is coming from. So really nothing new with the heart that we didn't already know. In other news, the blood culture from Elli's arterial line in her foot didn't grow any real type of bacteria. It grew out a little something, but if she were in "normal world" they would not use antibiotics on it, it would resolve on it's own. Since Elli has had so many surgeries and has so many lines she will continue the current course of antibiotics for about another week.

Ok this post is getting longer and longer, but Dr. K just came back in to talk to us once again. The surgery is not definite for tomorrow, he will have to okay it first depending on what kind of night and morning Elli has and let us know that they will be able to do the surgery right where she is. Dr. K even said "they do open heart surgeries in this room, they should be able to do this little procedure" I don't really think he wants her moved, and neither do we. On that note, we are going to be so bummed when Dr. K leaves. He was scheduled to be the Attending neonatologist until last Friday or Saturday but decided to stay until Thursday (since he thinks Elli is such a fighter, he wants to see her get stable). Seriously I must stop typing now...If more news comes up, I will put it in another post.