Today I was asked why Robby needs a service dog. Given that we are trying to raise an enormous amount of money for this dog, it is a completely valid question. I told part of Robby's Story in an earlier post on this blog. I will continue it here.
Since my previous post, Robby has had 4 more revisions. The most recent shunt failure was a mere 10 days ago. They are all terrifying for their own reasons. For instance, his last two failures were in April and June of 2017...just two months apart. This time was one of the scariest. His neurosurgeon was concerned that there may be some sort of infection in his brain causing the shunt to fail so frequently. That is something no parent of a child with hydrocephalus wants to hear. Especially when it's the second time you hear it, because now you know what it means.
And what it means is that your child is about to have not one, but two surgeries and roughly a week of what amounts to torture for mom and dad. Why? Well aside from the additional surgery, there is the EVD (external ventricular drain). The EVD is a tube that drains the excess CSF (cerebral spinal fluid) from the brain into a bag which hangs like an IV bag on a pole next to the bed. In order to maintain proper pressure and CSF levels the patient has to remain in a position level with the drain. So every time your child wiggles into a different position the nurses have to be called to re-level the drain. And every time he reaches up to scratch the area you nearly jump out of your skin because you fear he may yank that drain tube right out of his head. When a neurosurgeon says your child may have an infection, it means they are going to remove the entire shunt (rather than just the catheter)...also more extensive surgery. They put in an EVD and the EVD does the job of the shunt for several days while your child is pumped full of antibiotics. Once it is determined that they are infection-free, another surgery is performed to remove the EVD and place a new shunt. So for us it meant that Robby spent 8 days in the hospital and came out with 4 new scars.
His most recent revision was also scary because there was no seizure. Don't get me wrong, seizures are something I wish Robby didn't have to deal with. However, they are also one of two giant red flags that alert me to his shunt failure. The other is vomiting. I'm not talking about flu vomit where it's a few times in a day and he can keep down crackers and Gatorade. I'm talking twelve times over a six-hour period. There does happen to be a virus going around so I didn't take him straight to the children's hospital. Our local ER checked him out and his scans looked normal (whatever, they never look any different...imaging is almost completely useless for Robby) and the doctor seemed content that he had a virus and sent us on our way. But one thing kept nagging at me. His flu test came back negative. Now I know there are a hundred other viruses they didn't test for, but let's be real. If it was a virus then it would likely have been the one everyone else is testing positive for. So off to the children's hospital we went and after a quick shunt tap we found that he was in fact in shunt failure.
The thing about this failure is that when they tapped the shunt they got zero fluid. Now usually there is at least a tiny bit. So I'm honestly not convinced that he didn't have a seizure. It just may have been one of those that was so quick and quiet that I missed it. Which is were a service dog would have come in very handy.
If Robby did have a seizure, his service dog would have been able to alert me that he needed medical attention. A service dog could also provide many other benefits to him as his cerebral palsy and recently diagnosed dystonia leave him with limited mobility. A service dog could help with such tasks as opening doors, providing stability during transfers, and even pulling clothing on and off. Robby also has extremely low vision (about 5%), so a service dog would make it easier for him to navigate his environment safely. There are also studies that show that service animals improve the social and emotional well-being of their owners.
If reading Robby's story has moved you to donate to our campaign you can help in several ways. You can donate to our GoFundMe account or through PayPal using the email becky.wetzler@live.com. You can also purchase my book from Amazon if you would like to read more about Robby. And please like and share Service Dog For Robby on Facebook to see updates on my little superhero and our fundraising campaign.
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