A Lot to Process

Mason had a fairly ok night last night. His nurse was great about giving him a burst dose of his drugs before doing anything with him, so he was able to rest comfortably. Mama rested well, too, not getting out of bed from 10:30 when I hit the hay until about 6 this morning when things got moving. A good night of rest. During the day, while we were waiting for the cath lab, he had some trouble with being uncomfortable, but we were able to give him some pain medication, sedatives, and paralytics to try to keep him comfortable.

We talked to the infectious disease doctor this morning about the bacteria that grew in Mason's lung culture. Unfortunately, she burst our bubble. According to her, if you did a culture 24 hours after anyone was intubated, you would get the same results. The bacteria that came up was not the culprit we were looking for. It was just an easy target. So, the antibiotics were stopped today. It does not make sense to treat Mason with antibiotics when he does not have an active infection. Especially since he is exposed to new bugs everyday he's here.

Mason did get to the catheterization lab at about 4:30 this afternoon. Bill and I took advantage of the time when we couldn't be with Mason and got away for a while. Thank you to those who have given us gift cards! We did a little shopping and had a nice dinner out. We returned just a few minutes before Mason was brought back to his room. It was quite the sight as 2 respiratory therapists, 2 nurses, and a transport person tried to navigate all the equipment back into his room.

After about another hour of waiting for the cardiologist, we were debriefed on what they found. There's really no way to explain what they found without getting technical, so I apologize in advance. Basically, what they found was worse than they thought they would. Normally, the blood pressure in the pulmonary arteries is about 20% of our overall blood pressure. In Mason, they found up to 85% of his overall blood pressure -- not good. Fortunately, his pressure does respond somewhat to therapies that can be applied like concentrated oxygen and nitric oxide. Unfortunately, both of those therapies can be toxic to the lungs if applied for too long or at too high of levels. Once again, we are faced with "the lesser of the evils" type of situation. For now, Mason's heart is working hard trying to compensate for the pulmonary hypertension by pumping a lot of blood through the heart, but in Mason's case, though, "a lot" is relative. Mason has become anemic since having all of the lab tests which doesn't really work well with his heart issue, and can become serious quickly so we are doing a blood transfusion tonight. We are hopeful that having more blood in his system will allow his heart to take a little bit of a break and not have to work so hard. I realize this all can be confusing - we talked to the doctors for quite a while trying to completely understand. The best way I understood it was by way of a math type of equation. First, though, I'll define the terms:

Oxygen delivery = how much the body decides it needs and how much has to be pumped out to the body. This is a set number.
Cardiac output = heart rate and volume of blood being pumped with each contraction of the heart
Oxygen Content = oxygen saturation and hemoglobin (red blood cells)

So, the equation:
oxygen delivery = cardiac output x oxygen content

Since Mason's hemoglobin is low, the oxygen content is low, so the cardiac output has to be higher to get the oxygen delivery that the body needs. We are hoping that if we give the transfusion, then the oxygen content can be higher and the cardiac output can be lower. Thus, a rest for his heart.

This is almost more than we can process in a short amount of time. From what we gathered from the doctors, the best chance Mason has is to let his lungs grow over time. We were again reminded that lung tissue does continue to grow after birth. We have heard that it continues to anywhere from age 4 to age 8. We are hopeful that with time, he can get better. The one thing we do know with almost certainty, though, is that Mason cannot grow under the circumstances that brought him into the hospital - working hard to breathe, losing weight, and being on a high level of constant steroids. So, our answer: we will be moving toward a tracheostomy and ventilator for Mason. When? We have no idea. For how long? We have no idea. Right now, we are still in an acute illness. Mason has to be far more stable and allow the ventilator to work while he is awake and aware of what's going on before we can even think about a trach. We have a very long road ahead of us.

Thank you to everyone who posted a comment on the last blog. Your kind words and support really helped keep our spirits positive today. Thank you!