On the 4th of July, Baxter, my happy, bouncy 5 year old, was playing by himself when he suddenly screamed, that horrible 'something-is-really-wrong' scream. He was holding his face and we couldn't get him to open his right eye. We didn’t know it, but he had accidentally poked a hole into his eye on the inner edge of his cornea, with a plastic toy. What?!?! A parents' worst nightmare - accidents happen but I never thought I'd be facing my boy loosing his eye.
After a harrowing week of trying to figure out what was wrong, Baxter and I drove 5 hours to San Francisco for a three hour emergency eye surgery. I remember trying not to cry alone in the waiting room, in the middle of the night, pacing and breathing, hugging myself for comfort.
Thankfully, the surgery was successful, followed by weeks at home in recovery. In November, I was horrified to realize Baxter was blind in that eye, which was due to his retina detaching - so another long surgery - all to save his eye and his sight.
Post surgery he had to spend 75% of his waking hours face down for 14 days, to ensure the air bubble in his eye pressed the retina into place, and endured 4 sets of eyedrops a day.
And other surgery is coming up in February...
We could use your help
It’s really hard to ask for help - If you have any extra you can share this holiday season, it would really help my boys and I. We’ll put funds we raise towards our basic needs: rent, utilities, car/gas, groceries and medical trip expenses.
I have missed weeks of work over the last 6 months trying to save Baxter's vision - which is terrifying on both accounts. I cry pretty much every day, at least once - it's the stress of holding our lives together as a recently relocated, single mom, still in the middle of this medical journey. I’m managing expenses and even so our resources are depleted and I’m scared. I wake up scared - which bills can I put off? We have another surgery in 8 weeks and the stress is taking it’s toll.
I'm recently divorced and my ex has the boys on the weekends with a very limited ability to assist during the week - so the travel, hospital stays and weekday care have fallen to me.
Medi-cal has covered the medical costs for which we are profoundly grateful and humbled. Thank you, Californians, from the bottom of our hearts. I just never expected all the additional costs, like parking lot fees...
There is also the challenge of arranging care for Baxter’s big brother, Hugo, when we are out of town. My family has helped with housing and food when we are in SF. We’ve had to pay sitters to cover Hugo a few nights/mornings. Sweet big brother, he asked the opthamolagist to teach him ecolocation, so he could teach Baxter, ha!
What happened? - A detailed description
The pediatrician we saw misdiagnosed the injury as pink eye and withheld a referral to an opthamologist on the first visit. On finally seeing an opthamologist, he confirmed there was a puncture wound into his eye and referred Baxter to UCSF Benioff’s Children’s Hospital for immediate surgery. Baxter and I were on the road in an hour and he had surgery with an amazing team that night. He was chipper going in, and impressed all the staff with his cooperation. I'm still dealing with my feelings of rage and shame per the first pediatrician - there's so much emotion to process through this journey, as parents of ill children know... and it's difficult to take space, while being the strong parent.
The surgical team sewed up the hole after confirming that the retina was intact and in place, the optic nerve uninjured and that nothing was inside his eye. They put in dissolving and non-dissolving stitches, which required a subsequent surgical removal. We spent a few days in the hospital, with a follow up return visit a week later, and removal of the stitches 2 weeks after that. Three two- plus day trips to San Francisco in July and August, plus Baxter staying home full time.
In November I noticed that Baxter’s pupil was not dilating. We went to the opthamologist who was unable to get the pupil to dilate and confirmed that Baxter could not see out of his right eye.
I couldn't help but think that this was it, he was loosing his eye all together. Before the age of 8 vision is not fully stable, meaning that with an injury, the brain can pull resources and stop supporting the eye(s). 6% of our bloodflow goes to support our resource heavy eyes. The grief and shame I felt were crippling, even when I tried not to give in, to withhold judgement; I just felt this viseral mother grief, even knowing many people have one eye - it's the loss, the loss of that perfect, beautiful eye. I found myself crying in my car - probably because that's the place I find myself alone long enough to fall apart.
Baxter was upset to hear the doctor say he might not see with that eye, if it could be saved. His face fell and I was angry the doctor had said that in front of him. I told Baxter that he made his eye in the first place, and he should focus on healing his eye, not listen to that one doctor.
Back at UCSF an ultrasound showed that Baxter’s retina had detached. His lens had been more injured than they originally thought, and scar tissue had formed, attached to the retina and pulled it out of place. They felt confident about a surgical repair.
A week later, right after Thanksgiving, Baxter had another three hour surgery in which is lens was removed (and discarded), his vitreous eye-gel replaced with silicone, scar tissue removed and his retina lasered and belted into place (yes, a permanent belt implanted.) He was then directed to spend 75% of his waking hours face down for 14 days, to ensure the air bubble in his eye pressed the retina into place, and 4 sets of eyedrops a day. Baxter did his best with a massage table and iPad, enjoying games and movies until he couldn’t stay still!
Last week we returned to UCSF to check on the eye post the surgery, which required putting him out to get a look. With each procedure he is more sensitive. Thankfully, the surgeons say he is healing well. Next surgery will be right around his Valentine's Day birthday.
It’s really hard to ask - If you have any extra you can share this holiday season, it would really help my boys and I. We’ll put funds we raise towards our basic needs: rent, utilities, car/gas, groceries.
Thank you for your kind thoughts and consideration.
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