Monday Mayhem

It is strange to have been in the CICU for so long that we notice patterns in our weeks. It is official, Mondays are mayhem: more new patient admissions and doctors coming off of their weekends ready to tweak and test. While we arrived at the hospital at 10:15 this morning, we didn’t get to see Samuel until noon. There was a new patient next to Samuel who is on the bypass machine that is doing the work for his heart and lungs while he awaits or recovers from surgery. Later in the day we had to leave the CICU for another hour because Samuel was finally getting his bronchoscopy. These interruptions usually arrive with very little forewarning.

Early this morning Samuel’s blood gas numbers were poor so they had to make some adjustments. Usually these adjustments include things like suctioning his lungs (through the ventilator tool) or mouth, changing the settings on the ventilator, adjusting his meds, or giving him new ones. One new adjustment that they made this morning was to turn him on his tummy. The hope was that changing the pressure from the back to the front would help his lungs. Doing so revealed a bed sore on the back of his head from being stationary on the oscillator for several days. They have also halved the dose of nitric oxide (an inhalant drug to treat the symptoms of his pulmonary hypertension) that he is breathing in and halved the amount of breast milk that he is getting – he had “coffee grounds” in his NG tube, signifying some trouble digesting the milk. Knowing that he has had a tough night makes for more anxious mornings – wondering how he’s doing and wanting (but being nervous) to see him. When I look over the last 3-4 days, his lungs and ventilation really have been fairly steady. We may have even made a bit of progress. At the same time, there seem to be a couple of times each day when his condition dips and recovers. These keep us on our toes…and knees.

One respiratory therapist told me today that “the human body is so much smarter than we are. Every treatment or drug that we have eventually creates another problem. But the body adjusts to them to compensate. This is why some of the things we do only work for a day or two before we have to try to fool the body again.” Maybe this is the reason for the dips. Reflecting on the fact that Samuel’s due date (8/25) is not for another week, Kathryn’s mom has commented about how many drugs, how much technology and knowledge, and how much medical apparatus it requires to simulate the womb. God’s creation really is an amazing thing.

This surfaced several days ago, but we haven’t yet explained the latest theory that the cardiologists have about another heart abnormality in our little mystery. When the doctors took a second look at the cath lab images, they saw something that they hadn’t noticed before. They believe that Samuel has a hemangioma (a small, benign tumor of the cells that line the blood vessels; google it – you’ve seen them before). Hemangioma is not so rare, but none of the doctors have ever heard of a hemangioma on the heart before. It is actually possible that this anomaly is reducing the blood flow from the fistulae back into the right side of his heart (which would be a good thing). In the next day or two, the team of cardiologists up at Children’s Hospital Boston should be looking at data, echocardiograms, and cath lab images of our son. Please pray that they may have some further insight in diagnosing and treating him.

As already mentioned, Samuel had his bronchoscopy today. They send a scope with a camera and light through the endotracheal tube (i.e. his ventilator breathing tube) into his lung. The right lung (the one having the harder time till now) looked okay, but the left lung appeared at least partially collapsed in the morning’s xray. Prior to the procedure, the cardiologist involved was concerned about bleeding and/or a blood plugs because of some hemorrhaging he had in his lungs early on. Until he mentioned this, Kathryn and I didn’t even know that his lungs had been bleeding. The pulmonologist, on the other hand, was concerned that the mucus secretions would either be so deep in his lungs or so thick that he wouldn’t be able to get them out. Thankfully, neither doctor’s concern was realized. There was a “moderate” amount of mucus and fluid with a little bit of a pink tint, but they were able to suction a good deal of it out. The pulmonologist said that he feels like Samuel’s situation was the type of case in which he is able to do some good. They sent some of the suctioned stuff to the lab to be sure he doesn’t have an infection of any sort.

We also got to ask the pulmonologist about his perception of Samuel’s lung troubles. We had several months before Samuel was born to get our arms around the anatomy and function of the heart. I’ve had a harder time getting my arms around the anatomy and physiology of the lungs in the last week. It sounds like Samuel has two primary lung problems: 1) mucus secretions gathering in his lungs, and 2) primary pulmonary hypertension (i.e. excess pressure in the arteries and vessels around the lungs). The former is actually the result of him being on the ventilator; his body cannot sneeze, cough, or spit out the things that it would if he were breathing on his own. The heart defects may be contributing via excess blood flow to the lungs, but the pulmonologist said that even a completely healthy person who was put on the ventilator for a week would need the exact same procedure done. As a result Samuel will likely need another bronchoscopy at some point. Please continue to pray that God heals Samuel’s lungs.

We continue to receive encouragement and support – a stack of notes today from our church elders and Buckhead church staff members, friends mowing our lawn, meals and snacks, many prayers, etc. It is very comforting to know that we are not alone in this. We are the beneficiaries of the church living, loving, and serving as it is called to do. It is humbling, and we are grateful. No matter how our God writes the coming chapters, we will (and do) have a story to tell of His goodness and faithfulness. Thanks for being a part of it.