Ethan has been making slow but steady progress from transplant until now. He has gotten to ride a grown up trike through the hallways, go for walks around the unit, sunbathe on the 3rd floor patio, play basketball in the gym, walk up and down stairs, make origami mobiles for one of the RTs who is expecting soon, and play some pool in the teen lounge. He has certainly been keeping busy while throwing some curveballs at the doctors and nurses. He certainly likes to keep everyone guessing.
We learned early in Ethan’s life that nothing was easy with him. Even if he had the option to do easy, he did things the hard way. This is exactly like that.
Ethan has been very fatigued, for many reasons, but especially because his hemoglobin levels are very low. This evening, Ethan began having difficulty breathing and so we called the doctor in to evaluate him. They did x-rays, EKG, and bloodwork. The x-ray shows the the existing collapse of the left lower lobe of his lung is worsening. Also, the swelling in his lungs is worsening. Also, he has partial paralysis of his diaphragm on the left side. The EKG shows that he has inverted T waves. This is very concerning.
The doctors have decided to begin a transfusion of 2 units of blood to help raise the hemoglobin. This will help his fatigue, however, it also poses problems. Transfusion adds fluid. He is already retaining fluid and this is a problem. To correct that, they will increase his lasix to IV and give a substantial amount to help him void off the excess fluid without loosing RBCs. The other risk is that he is a transplant patient. RBCs can introduce antibodies into his system that could cause problems related to rejection. So they will need to monitor him closely for signs of rejection.
His right ventricle is struggling because it is pumping to one lung rather than two. This contributes to his swelling. However, the doctors are watching everything very closely and responding appropriately and in a timely manner.
We have some real hurdles to get over in the next couple of days. We know that our God is big and more than capable of providing healing; however, we also know that His thoughts are not our thought, neither are His ways our ways. No matter the outcome, we trust our God who is LOVE!