Sam’s Story

Site created on November 12, 2019

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.


Newest Update

Journal entry by Travis Norton

Sam update. He was moved back to ICU last night as a precautionary after a really bad day yesterday. He slept most the day. His heart is racing. He threw up a couple times. They think it's mostly due to side effects to the new drug he's on, but it might also be some kind of cold or illness that's making its way through the hospital. He did great last night and slept well and kept all his medicine down. Prayers for a good day today. Thanks to Pastor Bob for covering a funeral for me today! It's hard to know what work to try to do and what to give up. Trying to find that balance. Tori and I have both been given high marks for our training in mixing his medicine, so that shouldn't' be an issue to keep us here much longer.
Patients and caregivers love hearing from you; add a comment to show your support.
Help Sam Stay Connected to Family and Friends

Your $25 donation to CaringBridge will help keep this site online for two weeks. And if you donate by March 28, a generous CaringBridge donor will match your donation, dollar for dollar, up to $10,000.

Make your gift in honor of Sam by midnight on March 28 to be counted!

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top