Jaymun has been a visitor to the PICU for a week now. While I've deeply appreciated the kind "hospitality" shown us here, I'm anxious to leave.This past week has been nothing short of a bad nightmare, and I'm happy we have hope that the end is finally in sight. A week ago, things were looking very bad for our little guy. I'm not sure if we'll ever be able to paint an accurate picture of how critical Jaymun's condition has been. Dave's last journal entries were frantic and painful to read, I'm sure, but actually living through it has been both physically and emotionally draining. I have learned over the years that he and I handle crisis situations differently. His first impulse was to pass on our circumstances immediately to the website. Mine was to crawl inside a dark cave and live the life of a hermit. Writing entries here is never therapeutic for me, as some might expect. Rather, it dredges up painful emotions that I'd sooner leave unexplored for the time being.
Jaymun was sick. Deathly sick. I have never seen a stomach swell up like that before nor have I ever thought that the words "liver disease" would be applied to a child of mine. Every day since last Sunday, there would be more bad news for us, more blood counts that were coming back elevated, and more tests that alerted everyone to the fact that this boy was nearing a very serious point of no return. We could see the deep lines of worry furrowed into our team of doctors, the way they tossed his condition around and around the circle, each specialist looking more and more concerned. You didn't have to be a physician to pick up on the fact that no one had a solution for what was happening to Jaymun's body. They gave it to us straightforward and honestly, "His liver is failing. If we can't reverse the damage somehow, he will die." They don't voice sobering possibilities like that to the parents unless they're fairly worried that things are heading in a downward direction quickly.
Dave and I have handled five months of worry and stress since the day Jaymun was born. We have somehow settled into a routine of taking care of Jaymun's needs and medical issues over this time. People have a way of adapting to their circumstances and dealing with what life gives them. It's a strange sort of survival mechanism that kicks in when hardships happen. We've seen this on the HOT unit with countless families who are adjusting their lives around their child's cancer diagnosis.
We were dropkicked into the ICU on Sunday night when Jaymun's heart rate started to skyrocket. It was a sudden launch into yet another scary world of brand new doctors, new nurses, new machines, new rules, new everything. I don't think we were fully prepared for the way things escalated with Jaymun's condition. His belly kept getting more and more swollen until it was pushing up into his lungs. He went from wearing a size 3 diaper to a size 5 in a matter of days. His face was barely recognizable and his hoarse groans were barely audible. His breathing was extremely labored. The mucositis that they warned us could get very ugly, did.
I won't go into all the medical details of the past week. There really isn't any point--so many numbers, tests, lab results, drugs, side effects, medications, etc.etc. We were completely helpless to stop any of it and the retelling of it all never settles well with me. The ICU is an undeniable world of sorrow, each room aching with a different story. We've met some of the parents and heard their heartache and frustration with life. It doesn't matter whether the diagnosis is a birth defect or a heart condition or cancer--we're all just parents who love our children and want them to get better. The horrifying reality is that not all of us will leave the ICU with our child alive and well.
I fully share the pain that all of the mothers here live with on a daily basis. My sweet baby has been through four rounds of chemo and a bone marrow transplant. That would seem to be enough for a lifetime, yet he's now fighting multiple viruses and infections on top of the leukemia. The last time I saw his smile was more than a week ago. To watch him laying completely still in his crib, with tubes down his throat and nose, is unbearable. He has so many drugs and medications being pumped into his little body that I've lost track of the names of them. Every night I fall asleep with the sounds of machines beeping and humming away and the thought that it's quite possible I'll be awakened by alarms letting us know there's yet another problem.
They tell us he's doing better. The liver problems seem to be lessening. He's getting some rest since he's been intubated and the machines are doing more of the work for his lungs. They drained his poor belly of massive amounts of fluid and it looks much softer now, closer to his former chubby tummy. Devon's cells have begun to engraft in his body and his BMT doctors are pleased with the results of the actual transplant so far. But even with this latest encouragement, I don't think I'll ever relax until we're able to take him home for good.
He scared us badly this week. I'm realizing just how strong he's had to be to fight so hard for so long and I wonder how much more he can take before he gets too tired to keep going. It's the same thing I wonder about myself. It's frightening to love a person that much and hear a doctor actually utter the words, "He may die." We live with this fear every day. It consumes our every thought, no matter where we may be.
We're just trudging through the days as best we can, trying to keep our focus on getting that breathing tube taken out and finishing up his recovery from the transplant. I'd venture to say he's in a much better place than he was a week ago, with a firmer grip on getting the VOD and CMV under control. We won't know the full extent of damage until he starts to heal from the trauma of this past week. When I wrote about the side effects from the chemo drugs a few weeks ago, people may have thought there was some dramatic exaggeration about the risks and complications.
There hasn't been. It's all very, very real.
Thank you to those that sent thoughtful guestbook messages and a special thanks for all your prayers throughout this time. I think Dave would agree that we could definitely feel all the prayers upholding us. I have the feeling that God knows His reputation is on the line when it comes to Jaymun's healing! I like to think of everyone's prayers surrounding Jaymun like a thick cloud of protection during his fight with the infections. Someday I hope to tell him of how people rallied around the world to storm the gates of heaven with their prayers.
Looking at Jaymun right now is painful. There is no smile, no hint of recognition, few signs of the active baby we knew just a short while ago. In some ways, I don't want any visual reminders of this time spent in the ICU. But as I was searching through my photos for something to share with those that are praying for our son, I saw this one and I felt as if it sums up the week spent here. Ignore all the tubes and tape, if you can, and focus on what I see: a little boy, peaceful in sweet slumber, snuggled in cozy with his teddy bear.