We started noticing that Sam was feeling well in January of 2019. He was lethargic and just didn’t seem to have the energy he used to. But there wasn’t anything the doctors could see that was wrong with him. But soon he was having “episodes” where he would throw up after just a little bit of exercising, like walking up the stairs or to the car after school. We went to the doctor and started down the diagnosis trail. At first we thought it was acid reflux, so we got Sam on medication for that. Then we wondered if something was wrong with his swallowing, so we did a swallow study. Nothing made a difference and Sam got worse. He started sleeping a lot, refusing to move, sweating in his sleep. Finally, fed up and scared, Tori took him to the emergency room at Children’s hospital in Colorado Springs. They did an echo cardiogram and saw that he had definite signs of Pulmonary Hypertension. He was sent by ambulance to Anschutz in Denver where he could get a heart catherization to confirm the diagnosis.
Don’t google Pulmonary Arterial Hypertension. We did and our hearts sank. It’s not curable. Life expectancy is low. Sam has a severe case. But the good news is that he is responding to treatment. He is on the three types of medication, including the one for the most severe cases. The medicine is reducing pressure in his heart by relaxing his veins. We just started the most powerful and complicated medicine this week(November 4) after Sam had another episode. We’ve been back and forth between ICU and the step down unit as Sam has reacted to this new medication and doctors are trying to figure out the proper dose and the proper pace to increase the dose to as much as his body can handle.
The plan now is for Victoria and I to get trained on mixing his medication and managing the pump that will deliver it continuously directly the veins leading to his heart. A central line. Sam will come home on oxygen and on this new drug, Remodulin. as well as two other oral medications. These treatments are very expensive and so we’re asking for help from family and friends.
Luckily we have great insurance so the cost to us will be about $5,400 but it is due January 1 of each year. If you’d like to make a small donation towards that, it would really help. If we exceed our goal, we’ll reserve donations for future care of Sam.