Balboa Navy Medical Center (Balboa) does not have adequate facilities to treat children with cancer. Our insurance refused to send her to Rady Childrens Hospital even though it was 10 minutes away. Children being treated at Balboa are confined to their rooms on the pediatric ward because of their low immune system. The doctors feared she would catch something from another patient, so even asking to go outside was rarely allowed. Doctors feared she would catch something doing the walk from her room to the elevator doors. I think on two or three occassions we were given a wheelchair, since Lulu wasn't able to walk more than a few steps, so get some fresh air.
Rady Childrens Hospital has its own cancer floor where everyone has low immune systems, away from children that have anything contagious that could harm them. They even have a playroom that gets sanitized frequently so that Lulu can socialize with other cancer cuties like herself.
When Lulu was at Balboa I asked for a physical therapist because she was wasting away to bones. We were able to have someone come once a week to work with Lulu. It was a great idea, but a disaster. At that time Lulu's hair was falling out in clumps and housekeeping came once a day doing minimal cleaning. The physical therapist was having Lulu stand, with assistance, and toss a bouncy ball back & forth. Picture a dusty floor with hair clumps and a ball bouncing around. Gross, right? She also recommended floor exercises, so we would grab a hospital sheet and spread it out. As soon as a hairball came rolling by like a tumbleweed, that ended that exercise.
Fast forward to mid April and Lulu was bumped up to high risk (the chemo treatment wasn't getting rid of all the cancer like it should have). Since Balboa can not treat high risk patients we were transferred to Rady Childrens Hospital. In the mix of transferring the first focus was chemo, then vision testing (she had blurred vision from the leukemia & high blood pressure), and finally getting her taken off her seizure meds. (seizure meds were prescribed when she had the seizure after an extremely high blood pressure). Getting her back with a physical therapist took a back seat.
A few months after being at Rady's I asked for a physical therapy referral. That process took some weeks and we were authorized to see the physical therapist at Radys. We're 70+ miles from the hospital so that didn't work. Another referral was put in for a local facility. While all this referral mess was going on I asked my trainer if she would help & she agreed. Insurance snubbed the idea of a personal trainer because "they don't know childrens bodies". This is far from the truth. Erin has been so helpful with building Lulu's strength. She can now walk up the stairs by herself. Lulu also has nerve damage in her legs which causes her to collapse to the ground simply walking around the house. This was a HUGE self esteem crusher for Lulu. HUGE. With Erins training, Lulu's stumbles and falls are rare. Thankfully, she loves working out with Erin. It may be because Erin makes it fun and dresses up in costumes, then lets Lulu keep the costume.
Troy & I are very thankful for all the fundraising done when Lulu was first diagnosed. It has allowed us to provide Lulu with services when she needs them, not when insurance is ready to improve them. For that we are greatful! Thank you!
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