I have that yucky feeling today. No matter what I do I can’t shake my anxiety. A year ago at this very moment, Von was still in the PICU. He had just been diagnosed after a crash that had nearly killed him. We had just started him on his new medications, and he was starting to improve. I know he’s doing ok today, but the anxiety and the PTSD from the trauma we experienced last year is palpable. I can feel the sensations, the worry, the doubt, and the panic. It’s been hard to concentrate on anything else the past week, and when I’m not having serious anxiety, I’m finding myself completely exhausted and drained.
It doesn’t help that Von is still fighting some sort of virus. Yesterday he was at 101.5 just prior to bed, and overnight he woke up hotter than a furnace. Tylenol is helping to keep the fever down, but it has yet to break. I just put him down for a morning nap, and his fever was back up to 101.6. I wish I knew the cause of the fever. He’s definitely coughing more today, and he’s retracting a bit more when he breathes. He’s had a nebulizer treatment this morning, but his breathing is much more labored than normal. I wish I had an idea of what was going on with him. He doesn’t seem to be tugging at his ears, he is coughing and has a fever. If he doesn’t improve by tomorrow, I will take him to the doctor.
The past few weeks have been really, really hard on me. I’m struggling to smile at times because I’m just so stressed about the memories of his crash. His crash was so terrifying. I’m sure so many of you that are reading, were watching it happen from our posts online, but confronted with it face to face was the worst nightmare of my life. For the past year, I have been able to push it out of my brain, but it’s definitely hit me and hit me hard the past week. I’m hoping it’s just the time period and not the onset of something deeper in me. Todd seems to be handling things a lot better than me lately. We tend to go in waves. I have periods where everything seems so manageable, and I feel like we completely have a handle on his treatment. Days like today though, I feel desperate, and I wish my baby didn’t have to rely on medication to live.
The one silver lining today is that there is some really good football on this afternoon. I hope I can just lose myself in the games and enjoy myself for a minute. I hope that Von wakes up a bit more refreshed after his nap. Hopefully the fever will break and we won’t have to go to the doctor. We have an appointment in a couple of weeks to see the ENT. Von seems to get sicker than the average kid. We know he is dealing with asthma like symptoms, and we use a nebulizer daily. I’m hopeful the ENT can give us some insight on what is going on with his ears and sinuses. He’s had 4 ear infections since September. Our next stop after that is the pulmonologist. These are actually normal kid problems they tell me. Which should make me feel better, but it stresses me out because I’m dealing with normal kid problems with an abnormal child. Every illness makes him more sick than his peers at daycare. He misses a lot of daycare, and we miss a lot of work. His endocrine doctor promises us that the first few years are the worst, and then his immune system will improve. Fingers crossed.
I realize these blogs are so down. It’s just where I am at right now, and having this format is allowing me to face these emotions. I often feel better once it’s out. I can move on with my day. Part of having a child with special needs is you are constantly dealing with some sort of grieving. Right now I’m definitely grieving the fact that he has to deal with so much more than the average kid. The daily shots, the pills, the blood draws, the finger pricks to test blood sugar, the nebulizer, the syringes of medication, it just never seems to end. Well. That’s it for today. I wish I had more sunshine and lollipops, but it’s been a pretty cruddy weekend. Maybe tomorrow will provide some more smiles. Until then.