6/19/18 - Paralytic To The Rescue
It's ironic that literally having a broken heart, requires so much "heart" to survive. I am fighting so hard, guys. I have put all of my "heart" into this fight. You, my family and friends have all supported me with all of your "hearts", too. Mom's "heart" is in pieces and Dad's "heart" is strong for us all but I bet it's held together with glue because I know how scared he is, too. My life revolves around this heart failure; around hearts. My new heart...we pray comes soon. That's what we will talk about today; my new heart and making it to that point.
The fact of life is that I am in heart failure. My heart is broken beyond repair. In order to live, I need a new heart. So, the ugly truth, I am dying...but, with the help of great medical care and doctors, they have kept me alive with medicines and machines for 117 days. I have fought to live for 117 days; 2,808 hours in a hospital bed. As you know, I now have Pneumonia. It's a miracle that I went over 100 days in the hospital without getting it. So, as bad as it is, it was expected at some point. I am doing my best to get thru it. The antibiotics are helping. Mom and Dad thought I was doing pretty well the last two days with it. I looked like I was getting a bit better and looking stronger. I guess I may be doing better with the Pneumonia, in general. Now, today though, it seems my heart is showing signs of getting worse. I started the day well, just needing a little sedation to get thru. Therapy came and helped me sit up, like usual. I even laid onto my right side a while. This afternoon, though, i began breathing very deeply and frankly having trouble. My heart rate was up about 180's and held. So, I got more Morphine and Adivan. I settled, numbers normalized and Mom felt comfortable to go home. Not long after she left, my girlfriends for the day noticed i was struggling again. My temperature went up to 104* and my heart rate was up around 230bpm! I couldn't do it. That was very scary. The attending doctor came in and had the girls give more Adivan, Morphine and after those didn't work to normalize my numbers, they decided to give me a Paralytic. The Paralytic knocked me out and I was still...it worked to bring my numbers are back down to appropriate ranges. I am also getting a blood transfusion. It's a new donor this time, so that's a little nerving, but I hope to see it help my numbers, too. And to help my heart. It's been an stressful, overwhelming and scary afternoon.
Let's go back a little...last week was rough. The start of the Pneumonia, yes, but also, I had those bouts of high heart rates in the 200's bpm and high temperatures in relation. We thought that the Pneumonia was the culprit, but today the symptoms came back in the picture. Being that the Pneumonia is seemingly under control, now the question is my heart function again. I had labs drawn today and will be re-checked for anything that may be a contributor, but we think my heart is having trouble. The care team will work it out and keep me going. Mom and Dad are nervous about ECMO again, if all of this continues, before my new heart arrives. It is not at all out of the question. Unfortunately, the reality is that I am only "stabl-ish". ECMO here at Children's is not like what I had at UW AFCH...this ECMO would be more barbaric and absolutely terrifies Mom. The ECMO they would do, would require me to have my chest cut open (with the cannulas going thru my chest) and then the chest cavity is left open (taped up to cover things) while on the life support. It looks as horrible as it sounds, but it would give me more time to wait for my heart, so it's not all bad. Going back onto ECMO could be a risk to my heart transplant though, too. If I am not healthy enough, I can't get a new heart. Everything sounds so dramatic, I know, but this is all a very scary and very real fear for us. So, for now, I am trying not to "jump the gun" and am hanging out, doing my best. We hope things will normalize and I'll continue to be "stabl-ish", as I have been. That would be good. Sure, has been a hard day though. If you could all say an extra special pray for me tonight, my family and I could really use it. I need a new heart and soon. Please keep my someday donor's family in your prayers, too. Good Night. Love, Heath