I Should B Used to This…
I should be used to how life continues to throw us curveballs and challenges
J is truly a miracle. After years of fertility treatments during a break to save money for IUI/IVF we were lucky to get pregnant naturally with him. The pregnancy was hard many times went to hospital for various things either for me or him. He was born at 39.5 weeks at almost 11 pounds via C-section. He spent 7 days in the nicu due to breathing issues, oxygen levels, heart flap thing (I am terrible at remembering the official names for things) etc. but things generally were okay and then released home. He then had torticollis and needed physical therapy as a baby. Next, it was anaphylactic reaction to eggs during a cake smash at 11 months which resulted in discovering so many food allergies. He thankfully tested out of anaphylactic and all food allergies around the age of three. Next chronic ear infections leading to tubes. Then the behaviors and neurological stuff began. Autism, ADHD, Anxiety, OCD and treatments and navigating it all became the new normal and we continue to navigate it now but are in a good place and “stable”.
That brings us to the present…
Last week (Friday) at day camp a bunch of the kids (including him) rushed a camp counselor to give goodbye hugs as it was their last day. As can happen, the group all fell to the ground. J had a few bumps and bruises but nothing that needed first aid or anything. By that Sunday his nose had gotten extremely red and swollen and some areas darker. I thought perhaps he sprained his nose or broke a blood vessel or maybe even broken it even though he was not complaining of any pain. I had him put an ice pack on it. By Sunday afternoon it was draining yellow puss and was warm to touch. I immediately knew this is an infection and he needed to go to the pediatrician for sure. I called Monday morning and got him an appointment same day. We go and the doctor agrees it is infected. I shared this place on his nose that was draining has always been there since he was born and would drain clear fluid but had never acted like this before. She asked why it was never mentioned to a doctor. I said I did bring it up at his first pediatrician appointment and again at his 16 month appointment and was told both times by his retired pediatrician it was just an extra tear duct and nothing to worry about. So, for years it has drained and for years we never mentioned it again. Her face said it all, this was not it and it is concerning. She said we should see an ENT swiftly (that is a serious word in her practice and I know it). I got him in to an ENT within two days. The ENT was also taken aback by retired pediatrician’s diagnosis and said extra tear ducts are not a thing. At this point I’m still thinking he had a broken nose or infected broken blood vessel…i was NOT READY for what was to come next. I WAS NOT READY to hear this alone (husband was not with us). Not ready guys…
He has an extremely rare congenital birth condition called Nasal Dermoid Cyst that she believes connects to his brain which means it is also a Intracranial Dermoid Cyst. He needs surgery on his face and probably his brain. To determine placement, size, if it does connect to his brain, and if there is only one he will be getting MRI and CT scans with and without contrast. As he has to be still for a long time for both and need IV which none he does well with, he will need to be put under anesthesia for the scans. They are scheduled for September 8. Scan results will determine the surgery type. He will need scans annually to monitor this and make sure it does not come back. Risks to leaving it in is it will continue to grow and pressure on the brain/eyes/nerves which could be life threatening. As he has had this since birth and grown with it, his body could have been affected by it already and or grown around it.
To say I’m overwhelmed is an understatement. I’m preparing for the worst because I don’t want to be blind sided again. I’m mad this was missed by so many doctors and I’m mad it was misdiagnosed and I’m mad I didn’t push back and I’m mad I trusted the doctor. I’m mad. I’m mad that it has been a constant fight. I’m mad that just when things feel like they are settled something else is diagnosed and it’s always been like this. I’m MAD. I’m ANGRY. I’m SCARED and there is not a damn thing I can do about any of it and it sucks and is just not fair. I feel so helpless and lost and did I mention scared??
If you made it this far thanks for reading. I don’t know what the future holds for our guy but I have been able to find an international online group with other parents like us. Looking through the posts and photos it is even more clear he has had this since birth. From the posts it seems that after months of recovery from surgery it looks like kids go on to live life well with annual monitoring and it is even more rare it comes back. I know other parents have it worse out there and our challenges could be worse. However, none of this changes how I feel or my worries. I feel guilty about that too.
As of now J doesn’t understand what’s going on even though he was in the room when the doctor diagnosed and shared about the treatment plan. I’m dreading when he figures it out and or we will have to tell him.
Bloggie world one day, I will post here with nothing but good news. However, it seems this is my place to turn when I struggle. I’m glad I have this space to lean on.
I will share an update as soon as I’m able. Until then, be well Bloggie World.