When you can't fix it

 There is a silent suffering that comes with parenting a child who is chronically ill. 

Two years ago there were emergency room visits then neurology and MRIs. 

Since then we have visited the long covid clinic at Children's National Hospital in Washington, D.C. and Oschner Children's in New Orleans, we gave up on the local children's hospital in Pensacola - we never felt they were any help. 

Specialists my child has now:

cardiologist

neurologist

immunologist

hematologist

ENT 

general practice

Diagnoses they have: 

Long Covid

POTS - postural orthostatic tachycardia

Dysautonomia

migraine

iron deficiency anemia

PEM - post exertional malaise (This is where any energy Bird uses to go out and have a normal life costs them dearly and they end up in bed for days afterwards. - they are well in spurts. One amazing day usually costs them 2-4 days of unwell afterwards). 

The newest complication is ear pain that started at the end of June - we saw the GP who said it looked red and gave ear drops. It never got better. We followed up with antibiotics and a referral to the ENT. Since Bird already had one, we went to see our local ENT who said he couldn't find anything wrong with the ear other than the absence of fluid. The hearing test was normal despite Bird reporting a lack of hearing on that side and at times when they can hear it is muffled. It's most likely neurological, he said. Nerve pain. Could just be another manifestation of migraine. However, migraines aren't nonstop. Migraines go away. This doesn't. 

At times the pain is so severe it radiates into their face and jaw. I asked about trigeminal neuralgia as there is significant history in my family. I also asked about an acoustic neuroma. I requested an MRI. I also mentioned that Bird's migraines changed a few months ago and they now lose vision in one eye when they get a bad migraine. The neurologist said this wasn't a concern - but coupling the vision loss with the severe nerve pain in their "ear" wouldn't it be wise to image the brain just to make sure things are ok? The ENT agreed. 

Upon researching - acoustic neuromas in young people can be connected to neurofibromatosis - something that Bird has been screened for by a previous MRI two years ago. They have around 11-15 cafe au lait spots on their body, which puts them at a higher risk of this condition. The MRI was unremarkable but it was not done with contrast. There was no follow up genetic testing, either. 

Now we wait for the new MRI with contrast results. The CD was delivered to the ENT office this morning, but the radiology report won't be ready until mid-week. 

There is a feeling of utter helplessness when your child is in pain and there is nothing you can do to ease their pain. Advil and Tylenol don't help and stronger medicines you may have won't touch nerve pain. 

This child should be going to college - they should be embarking upon the adventure of their adult life. Instead they are laying in bed with ice packs on their head in the dark day in and day out because it's the only way they can cope with their pain. You go in quietly to check on them throughout the day - hoping today will bring a reprieve - just a break in the pain. You try not to think about the reality of what people who can't get out of pain turn to in their lives. You offer supportive texts when they tell you they can't go on living like this. You hope that something will show on the scan just so you have an answer - but you know that it will complicate your already complicated life and you try not to feel selfish. 

Their friends are either all gone to college or gave up being their friend long ago because it's hard to invest in a friendship when that friend is sick all the time. The few friends they have left don't come visit - sometimes I want to beg them to just come say hi because it can cheer my kid up so very much. They don't understand the importance of investing in friendship yet in their young lives. 

So as the mom you go in your room and cry, a lot. You try not to feel alone but you do. Utterly and terribly alone. You act like things are great - you try not to unload your burden on your friends because it's a lot. You feel overwhelmed and alone.