Brooke was diagnosed with 💚IIH 💙(Idiopathic Intracranial Hypertension). 07/07/2023 delivered her miracle baby 💓girl that is absolutely perfect!!We were in hopes the 💚IIH 💙would improve after delivery. But, the complete opposite happened! Brooke began getting worse almost by the day. She would push herself so hard, wanting to be better. But this is not a disease one can control. 4 months to the day of her diagnosis, we were back in ER. 7 lumbar punctures in 4 months, kidney failure, tachycardia, stroke level blood pressures, severe vision and memory loss: On Wednesday 09/13/2023 VP shunt surgery. 09/14/2023 Brooke was not progressing as we had all hoped.
There are a small portion of IIH patients that fall into category that the shunt is not enough. Brooke falls into that category. The concern is that there is vascular restriction as well along with optic nerve damage. Therefore, Brooke will need further imaging testing and at least 2 more surgeries.
Stephanie, Brooke’s mom, has taken an unpaid leave of absence to care for Brooke’s child and Brooke as she heals from this surgery. Brooke will have lots of doctors appointments and further scheduled surgeries. We are needing financial help to cover my lost wages to pay for living expenses, gas, etc. Brooke was approved for WIC so formal is covered.
💚💙Brooke returned to hospital Monday 10/16/23 as she had 2 of the 5 incisions infected. Admitted to ICU for sepsis. Surgery completed on 10/18/23 to remove infected shunt.
This time Brooke was sent home with instructions (which we ask for previously) on how to care for all 5 incisions. What to use to clean, sterile gauze etc. Last surgery we were told there was no specific instructions for caring for the incisions. She is on antibiotics and pain meds around the clock. Labs were stable when she left the hospital. She will F/U with ID outpatient. Watching for any signs or symptoms of the staph infection worsening.
Her vision and cognitively are much worse. Headaches worsening almost by the hour. Re: by neuro for IIH treatment right now is to return to ED unit for Lumbar Punctures to drain CFS fluid as often as needed. She has been referred to neuro-opthamology at UTSW for optic nerve fenestration and sinus surgery as the pressure in the brain is causing her sinus cavity to significantly narrow. There is no cure for IIH only treatments to try to slow down the loss of vision, cognitivity and her independence completely! Everyday is a blessing that she can see. We left the hospital knowing that chance of vision loss without the shunt increased significantly.
