The Bubsy Blaster

It’s wild ride here on Magnolia Avenue, hitched to the Bubsy coaster like we are and all.

The hospitalization of Children’s lasted 4 days. On the first day, he was admitted from the emergency room. Cardiology discontinued Lasix, his primary diuretic. The GI doc (we’ll call him Dr. Josh…mostly because that’s his name) put him on senna, an over the counter medication to increase the motility of the bowels (help the poop work it’s way down the chute).

On the second day Bobby made a poop for the ages. Cardiology decided that he shouldn’t be off of his Lasix, so they put him on a new, smaller dose. GI said that if he pooped the next day he could go home.

On the third day, Cardiology decided to keep him to make sure he responded OK to the Lasix. GI was too busy to see Bobby.

On the fourth day, Bobby vomited up part of his morning feed. Cardiology wouldn’t release him, saying we needed to talk to GI. GI still didn’t see Bobby. After we paged Dr. Josh he said that Cardiology was keeping him. He also said we shouldn’t page him anymore because ‘he had hospital patients to take care of’.

After a flurry of angry calls questioning why our son was in the hospital and no one knew why, Bobby was released rather hastily. All we accomplished for the GI problems that took us to the hospital was getting an over the counter medication the doctor should have thought to prescribe on an outpatient basis. Instead, Dr. Josh poo-poo’d our concerns about Bobby’s constipation until we ended up in the emergency room with a baby screaming with abdominal pain.

With all of his GI problems, as of September 25, Bobby had lost 4 oz since his surgery two months earlier. He’d slid from the 50th percentile on the Down Syndrome growth chart to the 25th percentile. So, finally, the GI doctor (a new doctor, much more responsive) scheduled an endoscopy for this Tuesday, The endoscopy involves sending a little camera down Bobby’s esophagus and another one up his back side to look for any GI issues. It’s the best diagnostic test they have.Of course, the day the doctor decided to do the endoscopy is the day Bobby started gaining weight like a mad man. We tried a new feeding schedule. He spends 2 hours eating and hanging out in his Tucker sling, a device that keeps him from sliding when we elevate his bed. The elevation minimizes the acid reflux. In the last eight days, he’s gained over half a pound.

The week before and after Bobby’s hospitalization were also topsy turvy on the daycare end. It became very clear to us that the early head start program that accepted him never intended for Bobby to attend the program. They were afraid to turn him down because it might look like a violation of the Americans with Disability Act (ADA) so they accepted him and made the transition requirements impossible for two working parents.

We spent about a week, hat in hand, being interrogated by the center nurse who was frightening the staff with misinformation about Bobby’s condition and being ignored by the center director who failed to return our calls and emails. When we did talk to her she said that Bobby’s transition would take 3-4 weeks and would include requirements like Valerie and I taking time off work to attend the day care center without Bobby, so we could understand how the classroom works.

Then, towards the end of the second week, Valerie and I found our fire again. As desperate as we are to find day care, we couldn’t leave Bobby in a place that so clearly didn’t want him. I was struggling being in a position of trying to convince someone that Bobby was worth their time. He’s the sweetest human being in the world. Taking care of him is a privilege, not some problem to be dodged. Plus, if I’m forced to go there, there is the ADA, designed to protect the rights of innocents like Bobby. So, we’ve stopped being beggars and have started being ourselves – mamas fully capable of protecting their baby boy.

First we decided to get Bobby a nanny until after his surgery. We can’t really afford it, but it’s the safest solution for him and peace of mind for his mamas. We think we found the right person – a woman who’s spent years doing special needs adoptions. She’s taking a year off and wants to get some first hand baby sugar. Bobby’s just the guy for her.

Then we turned our attention to the day care center. We spoke with several advocates in the Down Syndrome community. We could sue. The evidence of discrimination is overwhelming. But, we don’t have the energy, nor are we interested in personal compensation. We want new policies. So we wrote a letter to the director, explaining our position and detailing our desired changes. And we copied everyone from the director’s supervisor to the U.S. Department of Justice. You can view it at the following link if you like:

http://docs.google.com/Doc?id=dhgg89hh_25mhc9wg3

Bobby himself is, of course, sweetly oblivious to the drama around him. He spends his days playing and smiling and listening to music. Classic Country Western is his favorite. He can scoot across his playpen now. He makes raspberries on the back of his hand. He is showing a proclivity towards cow related toys. Today we’re headed to Lambs Farm, a place in the suburbs that has residential and work programs for individuals with developmental disabilities. Our goal is to some pictures of Bobby and a real cow, horse, goat, chicken. I’m sure we’ll have a fabulous time – I just wish the rest of life could be so simple.