Matters of the Heart: Update on Graham

Graham had surgery to place a tracheostomy, breathing tube in his neck, on February 5. The surgery itself went well but the recovery has been rocky. Graham is still in the ICU four weeks later. Graham has battled with a Pseudomonas infection since last November when he first went into the hospital. Now that he has plastic in his neck, infection will be a frequent if not constant battle. Graham continues to have coughing and vomiting fits. We are not sure why he is coughing. It could be the infection that comes and goes. It could be irritation from the trach. We are not sure why he is vomiting. It could be all the coughing or it could be a GI issue.

We are thankful that Graham is tolerating the trach and not grabbing at it or pulling it out. That is surely the grace of God! It has to be cleaned and the ties around his neck replaced twice a day. He tolerates this sometimes and sometimes looses his mind. Matt and I are learning how to care for the trach and how to change it. We have to change it out a certain number of times before going home. Unfortunately the trach keeps coming out accidentally (when G coughs a lot or rolls suddenly) and has to be replaced emergently by the respiratory therapist so we haven't had a chance to do it much ourselves yet. It can only be changed every few days because we don't want to irritate the stoma (hole in neck) or the trachea too much.

The right side of Graham's heart is getting larger because it is working too hard. We know that Graham's heart is still not in great shape but we had been told that his heart condition is not contributing to his respiratory difficulties and that he shouldn't need any further heart surgery until he is a young adult. Well... due to Graham's slow recovery, increased need for high respiratory support, and the enlarging of the right side of the heart, the cardiologists have been wanting to do a heart catheterization to get a good look at his heart. We had been putting them off because it didn't seem urgent and we wanted to let Graham get stronger first. Last week Graham had a random episode of serious respiratory and cardiac distress that called in all the doctors in the middle of the night. So on Monday they went forward with the catheterization.

He was in the procedure room for about 7 hours. The pulmonary arteries going from the heart to the lungs are narrow and they decided to place a stint in the left pulmonary artery. The stint didn't stay in place and they spent hours trying to move it back into place. They ended up stabilizing the stint in another location so it wouldn't have to be removed with open heart surgery but it isn't doing him any good where it is. Nothing is ever straight forward with this kid. Sigh.

Today ENT scoped Graham (put a camera down his trach) to measure his trachea. We have been waiting on them for a WEEK. They think that he could benefit from a longer trach to stint open more of his trachea to allow air to pass. This requires a custom order trach that will take anywhere from a few days to a month to get. We pray it comes quickly and that it will work well for Graham.

We continue to pray for God to heal Graham at least enough so that we can go home. We continue to be blessed by family, friends, and even strangers as we walk this valley. Thank you for your prayers and support!