Happy Spring everybody! I have loved seeing the flowers bloom and the grass green over the past few weeks. There's something about spring that rejuvenates my soul and gives me renewed energy.
Easter was amazing! I had a really spiritual experience on Easter morning. The kids woke up happy to start looking for their Easter baskets. Matthew had thrown up first thing when he woke up and wasn't feeling great, but he was still determined to get going. Seeing Matthew with little energy hooked up to his backpack of Milrinone and connected to his IV pole with his feeds while looking around the house for his Easter basket was a humbling sight. I got tears in my eyes as I watched him and contemplated what we were celebrating Easter morning. I realized at that moment stronger than I ever had that Matthew would be healed from his physically imperfect body one day. I felt so strongly that we would all be reunited one day together as families on the other side of the veil. Of course, I've known these things for a very long time. For some reason, on Easter morning, these truths were seared into my soul.I think this was Heavenly Father's Easter gift to me.
I have to apologize for being an inconsistent blogger. I must admit that sometimes I try to wait to blog until I have something positive to blog about. It seems like lately the good news is few and far between :( Nonetheless, here's the Matthew update:
Matthew's red and white blood count have been low for many months. Because he has spent so much time in the hospital, the medical teams were attributing the lower red blood count to the frequent inpatient blood draws and the white blood count to the chemotherapy drug and other immune suppressant medications Matthew was on. As we spent more and more time away from the hospital and got further out from taking the Bordezomib, we did not see a huge change in his red or white blood count production. While he was inpatient one of the times these past few months, Matthew had blood in his stool. The theory was that his RBC was lower possibly because of a GI bleed or several viruses he could have that can lower the production of RBC. And so the testing began. They took a ton of blood (ironic right) and scheduled him for an endoscopy and colonoscopy. The plan was for Matthew to stay for a 23 hour observation after the procedures and get an IVIG infusion while he was there. Matthew tolerated the procedures well and we now have many internal pictures of Matthew's colon and intestines to put in his scrapbook :) GI did not find an active bleed, but we gave him some because they took biopsies :-/ There were no ulcers either. What they did see is some evidences of ischemia in his gut but only in sections- not the entire gut- the pathology also confirmed these findings. I tell Matt that as soon as Matthew is admitted it's like being in a vortex. I feel like with each day we get sucked in deeper and deeper and there's no way we'll ever go home! 23 hours came and went. More tests were ordered and a CT angiogram was scheduled. The results from the angiogram told us that there was no blood clot or any other blockage leading to his GI system that would explain the ischemia. We also saw on CT that his liver and gallbladder are enlarged...probably from Matthew's heart failure. So, Matthew was admitted being in heart failure...we spent three days in the hospital and spent thousands of dollars on tests only to find out......Matthew's in heart failure. Sometimes I get frustrated! We couldn't proceed with another heart transplant though if he did have a GI bleed somewhere or if he had a clot somewhere. I guess being able to proceed with our next transplant still is the good news to report here. The bad news is that his heart failure is affecting other organs and I'm not sure how long they can hold out before permanent damage is done. Matthew has been on the list as a 1A for 30 days today. The average wait according to UNOS as a 1A is 38 days. I feel like we are racing against time and I'm not sure what will come first. I hope and pray Matthew can receive a heart quickly and we can move on from this nightmare! until then, I try to find peace in the spirit of Easter which I felt so strongly this week.