update

So it was very important for John and I to be there for rounds this morning (both the NICU team rounds and the cardiology team rounds). Normally, I like to be there for this part of the day, but I REALLY wanted to be there with John. With the crazyness of the week and the holiday and everything I wanted to make sure that he heard the same things I did and that we could clarify for one another if necessary. He knows how I think, so if i say something that might come out funny or vague, he can help me to rephrase it in an appropriate manner for the docs who don't obviously know me and my thought processes as well.

Right now, the biggest and most life-threatening issues for Malachi are his heart rhythm issues as well as his oxygen saturation levels. The terms that they are throwing around for naming his heart rhythm are "junctional rhythm" and "atrial ectopic tachycardia." Basically, without medication his heart would be constantly racing at the rate of over 200 beats per minute. This is currently being treated with a combination of atenolol and digoxin. These levels need to be closely watched and then adjusted on a weight-based scale. His biggest risk at this point with the medication is that these anti-arrhythmic drugs can cause more arrhythmias--primarily bradycardia or low heart rate. It's now a matter of finding the middle road of keeping the SVT away, but not inducing bradycardia. If they are unable to keep the bradys from happening, that is when a pacemaker may be considered. The only alternative to a pacemaker would be holding off as long as they can so that Chi can be bigger so they can fix his current heart problems. With his first open-heart surgery (click here for quick description of the modified stage I Norwood procedure) they sort of disconnected his pulmonary artery (which takes blood from heart to lungs) and combined it with his defective aorta (which takes blood to the rest of the body). They then placed a gore-tex conduit called a Sano shunt from one of his ventricles to his lungs in place of the pulmonary artery. He still has his ASD and VSD which currently allows for his oxygenated and deoxygenated blood to mix within the heart. This mixing of his blood is contributing to this low saturation levels. Without any of Malachi's other problems, just his heart defect should have his sats in the 80% range WITHOUT the support of a ventilator with oxygen and nitric oxide. Right now they are starting to wean him on his oxygen support. They go down on his support by 3% every hour as long as his sats stay above 70. When I called just a little bit ago he was down to 76% oxygen--this is HUGE for Malachi. When he is steadily at 60%, they will start trying to come down on the nitric oxide. It is important for Malachi to get off the ventilator as quickly as possible and to lower his settings so that he is less likely to develop some sort of lung disease while in the NICU. But, according to his cardiac catheterization the other day, the oxygen in his blood after the lungs and within each of the four chambers of his heart is good, like 94% on average. "Fixing" his heart would include replacing the shunt with a new conduit which has a valve as well as repairing and patching his ASD and VSD. That surgery would be a more permanent situation; however, it would still need revision as he grows and needs a bigger valve to handle his increased blood flow. We'll cross that bridge when we get there.

Lung disease isn't the only thing that he could develop while in the NICU. They have now added iatrogenic anemia to his ever-growing list of conditions and diagnoses. Basically, because of all the blood that they draw on a regular basis, his body hasn't exactly been producing enough red blood cells to keep up, so he has been requiring blood transfusions over the past couple days due to low hemoglobin levels (also required to take oxygen throughout his body).

a picture showing his heel from all of the blood samples that they have needed to draw for gas and electrolyte levels.

We are hoping and praying that he will have a stable and uneventful weekend. If he can do this, we will then be able to kind of look ahead a little bit. Hopefully next week there will be a cardiology conference regarding Malachi. This may include up to 15 cardiologists as well as 3 cardiovascular surgeons hearing his case, weighing all the facts of his history and current condition, and offering any opinions or theories that they might have in order to give some insight as to where we need to be going from here on out and possible options. Also, depending on cardiology's input as far as Malachi's stability from a cardiac standpoint, we will be revisiting the upcoming g-tube with Nissen surgery and the possibility of a trach at that time as well. It would really be great to get Malachi off the ventilator, but right now it is necessary due to the fact that he is still on the nitric oxide. At this point, no one on the NICU team is willing to see what happens when he comes off the iNO. So this is where we are... for now.

A couple more pictures. Disregard the weird look on my face. John only took two of me and Chi and unfortunately this was the better of the two ;).

We finished our day spending time with Curt and Laura. Emerson and the twins are only like six months apart. It's been amazing to watch them play with one another, like actually play and jabber on. Love it!