After what has been a scary, stressful, traumatic week for my family, I am so happy to say we are home and all doing well. We made it through the crisis and have a plan in place to prevent future incidents. We have so many visits, labs, tests, and followups planned with every specialist available: neurologist, nephrologist, geneticist, endocrinologist.
No one is entirely sure what happened. Preliminary diagnosis is some sort of mitochondrial metabolic disorder that made his blood react in super wonky ways. Plan is to try and let him be a normal kid, resume school and friends, and rush him to the ER if he does anything other than sneeze or fart. Any fever or vomiting and we are to go immediately. We have a letter to give to ER docs to tell them what labs to run and what to look for. So ya know, no pressure on me, not at all.
Kiddo is about 80% himself. He is still tired and pale, but is thankfully eating again. I was so happy to see him get all stubborn and stinky with me today, instead of weak and apathetic.
Mom (me) is about 60%. The first night back I did what I always do to numb myself, turned on dumb TV and ate everything in the house without sleeping all night. The adrenaline was so high I could taste it. Even though I was exhausted, hardly slept all week, and most of the sleeping was in a chair next to his hospital bed – I could not turn it off yet to sleep. The next day, yesterday, I completely crashed. I could not hold it together any more. I could not hold back the tears and the anger any more. I could not keep going. I’ve been strong all week with no breaks, always on edge that we might lose him, and never getting and answers about what was causing all of this. My own tummy shut down, waves of nausea, and then chills. I had no appetite. I got in bed shivering and shaking and fell into a fitful, dreamful sleep.
Today I had the first round of followups, with pediatrician and more bloodwork. Kiddo did not want anyone to touch him or look at him. He freaked out when his doctor tried to check the central line incision. I’m not sure he knows how of the pain he has endured came from his own body or what doctors inflicted, so he is understandably not as trusting.
We went over to the lab at the local hospital for the bloodwork – no appointments taken, walk-in only – and saw a crowded room. We waited over an hour, gave them the paperwork and were told we were there at the wrong time?! Apparently cortisol must be measured at 8am or 4pm only to get the peak values correct. No one told us this. So we had to go home and return several hours later and wait again. I was really upset by this, and it flipped something in me, as it one of several instances of lack of communication that resulted in inconvenience and frustration for kiddo and us. Everyone was coughing in that waiting room and I’m terrified we’ll all get the flu, and hate that we have to go back again. A total of 4 hours of doctoring today if you include driving and waiting rooms. I got angry and panicky all at once, and felt woozy. I realized I hadn’t eaten today, or yesterday, and was about to cry. We walked quickly back to the van. I immediately felt safer in my seat, though everything was spinning. I was happy Hubby was there to buckle in kiddo and drive us. Except I didn’t see that kiddo was still climbing in the back and I thought I would die when I heard his scream. I closed his finger in my door! I F-ing closed the door on his little finger! Me! I did it! I was too tired and dizzy to see him there. I lost it and started crying. Hubby yelled something like “I thought you saw him there behind you” and I cried harder.
Luckily, there is lots of padding in that door and his finger is so tiny it barely has a bruise. But it was about 10 minutes of both me and kiddo crying before we knew this. I just kept kissing him and telling him I was sorry. I was sure it was broken and was already picturing having to take him back inside to get an xray and splint. I was already swimming in inappropriate guilt from the past week, thinking I didn’t get him to the ER soon enough initially, that I should have seen the other signs more quickly, that I should have known how to take care of him better, that I should have listened more when he said his tummy hurt last month, etc.
We were going to take kiddo out to lunch after his appointments, but I asked to go home. Hubby dropped me off, and I cried and cried and cried. Until I was done crying. And then I made myself eat some applesauce and laid down. But strangely I could not rest, I felt like doing something useful, so I washed a sink full of dishes, which was strangely calming. Hubby and kiddo came back from lunch and I was pretty much ok again. Pretty much. I just have so much ickiness to work through, and so much rest to catch up on. And prayers that kiddo will continue to get his energy back and that this is not going to the beginning of a dreadful life-long disease.
I have had so many flashbacks of my own hospital traumas. I feared what he would remember as traumatic and tried to make each situation the least stressful as I could. Luckily for him, the worst images are mine alone. He has no idea what his tiny body looked like curled up in the huge icu bed with a space age looking bipap mask harnessed to his head, heart monitor leads going to one computer, iv going to the pump, and a catheter. It was like he was a robo-boy. He fell into a deep sleep on the breathing machine, which made him look even more helpless. I can’t get that image out of my head now and keep looking at him, not believing he is still here with me. I nearly lost him on several touch and go horrific moments. Never has nearly been such an important word.
Thanks to everyone for the words of support – your friendship gave me strength and allowed me to do what I did not think I could do – remain present and calm in the face of fear. And thanks to Hubby for being there for kiddo, and for me. And thanks to Grandma for watching the other kiddos all week for us. Most of all, thank you god for not taking my sunshine away from me and letting me see his beautiful smile again.