Noah's Current Condition

This past week has been rough. To be back in the ICU, with chest tubes, and a ventilator, and a PICC line, and to top it all off, be in the SAME bed we started our Denver journey in... well lets just say uugghhh! Are we starting this again? Although, it's been harder this time. Before we knew what was wrong. We knew what he needed to get better. And we didn't have to wait very long for it. What has made this so hard is the unknown...
Here is what has happened:
Noah had a bad transfusion reaction to the blood he received on Saturday. By early Sunday morning, he was back in the ICU, sedated, and on a ventilator. And, he's swollen head to toe, can't open his eyes because of the hives on his eye lids, and he's cherry red.
He was started on Steroids to treat this reaction but since we had been questioning rejection, they gave him very high doses of steroids known as Rejection treatment... He didn't get better.
He continued to have weird heart ectopy (missed beats, pauses, bigemini, PVCs, PACs, and bradicardia). We also couldn't get an accurate blood pressure. For some reason we couldn't get it to read. His heart rate was very low though. SO... Dr. Pietra finally decided we needed to do a cath. Noah should have been better and since he wasn't and not even headed in that direction, we needed to know more.

He went into the Cath lab about 6:15 last night. Once they got access and were working the cath up to his heart, Allison called to give me an update. Turns out, Noah's blood pressure was DANGEROUSLY high! In the 180's. Since he's an infant, that's the equivalent of an adult being in the 300's. (I can picture the Dr's reactions when they saw that... "HOLY CRAP!!") They finished the cath procedure, which included testing function, checking pressures, and taking 5 biopsies of his heart and he went straight down for a CT scan. The only thing they could think of that would cause pressure that high in addition to why his red blood cell levels keep dropping was a brain bleed. And from the way they were talking, they totally expected to find something completely devastating if not fatal.

We walked down to imaging and I felt like I had a beast locked in a cage inside my chest. It was screaming and clawing to get out but I was able to keep it locked up and stay composed. It didn't take long and Allison came out to tell me everything was fine. They didn't find anything even slightly abnormal. No bleed and no damage. I could not have been more relieved. They also scanned his lungs and they looked fine too (still wet and sick but nothing horrible) except the upper right corner of his right lung was bad. What they figured was very resistant pneumonia. So he starts several new antibiotics to treat the pneumonia. He was started on several drugs to try and bring down his blood pressure. He had a renal ultrasound to make sure it wasn't kidney related and everything looked great. The heart biopsies came back 100% negative. NO REJECTION! The steroids got rid of it all and his heart looks great! In fact, since it can pump so much pressure, it's a very good strong heart!

Now we just need to figure out what is causing the high blood pressure. The first thing the Dr. mentioned that it could be was............... Pheocromacytoma! I nearly fell out of my chair! It's a very rare Adrenal gland tumor. When I was having episodes several years ago and I was very sick, the Dr's thought I had Pheo. But luckily my symptoms went away and I was told it was possible the tumor went dormant and when it flared back up again we would start treatment then. So to hear that Noah might have Pheo nearly knocked the breath right out of me. Could this seriously be possible? My little boy, not even in this world for 2 months and he already had some of the most rare conditions you could possibly have. (TRALI, Pheo...You know they are rare when 98% of the Dr.s have no idea what it is or have even heard of it.)

So, we are running some tests to see if that's what it is. They are also still running the tests for TRALI. The other test they ran this morning was to see if he is making his own blood cells and he is. So there is still no explanation for his crit level to keep dropping. But we are going to do Direct Donor blood this time. Shane comes in to town tonight and first thing tomorrow he's going to the blood blank. I am not risking THAT again. *stupid blood transfusion reaction....*

Hopefully things will start to look up. Even if we never know whats going on and causing the problems, as long as they STOP and he gets better, I will be completely fine with that!