Sleeping at the Hospital is Like Camping

Every day Sylvie is thrown a challenge which she rises above and truly humbles me. Today's "Tribal Council" was the reinsertion of the NG tube. We opted to switch nostrils mostly because Sylvie's skin was so irritated from the sticky tape on the left side of her face. So when Sylvie's favorite nurse Jessica asked me to carry Sylvie into the treatment room [of doom], I anticipated it being more than Jessica, Dr. Andrea, Sylvie and myself. I saw the different size NG tubes on the sterile stainless steel tray and hoped that Sylvie didn't catch a glimpse. This would scare Jack Bauer. But when they asked me to put Sylvie onto the table, on her back, and hold her head perfectly still between my hands, I let them know that I was not the right woman for the job. In came Karen, Sylvie's next most-favorite nurse. The first tube was too big and I was mortified that Sylvie might have endured pain. I gently squeezed Sylvie's feet so she'd know I was there. I thought if I made direct eye contact with her, I might then see the tube being inserted and immediately throw up all over Sylvie's pink blanket. The doctor went back to the small tube which to give you any indication of size, is meant for the NICU babies. Afterwords, we retreated back to the safety of Room 5E-04. Sylvie was wiped out. Once back in bed, Sylvie turned onto her side and went to sleep. We were waiting for the mobile x-ray giraffe to come to x-ray her stomach just to make sure the tube was in place. Minutes later, Sylvie's nose rubbed onto the mattress and out popped the NG tube. For lack of better words, shit. Half an hour later we were forced to return to the treatment room [of doom] and without much fanfare, in went the tube. Sylvie's bravery is inspiring. We're trying the 'real food' version today. I considered calling Angelika Kitchen and having them pureee and strain a Dragon Bowl for Sylvie but thought Michael might get very annoyed at me.

We had an impromptu follow up meeting with Dr. Appel again, followed by the head of infectious diseases to look at Sylvie's awful rash and make some kind of determination. I'm not a doctor (but I play one on TV) but one would think that myself, Michael and his mom having allergies to certain antibiotics would raise an eyebrow or two. They did discontinue one of the antibiotics just in case. I thought it was humorous when a nurse asked me about the hippie sulfate-free baby soap that I wash Sylvie with (albeit infrequently since we're here). I mentioned to her the additives to Sylvie's NG tube food since they contain a ton of preservatives. I want to ask Dr. Rosen about the rash tomorrow. He might have a few good suggestions.

Now that Sylvie's "numbers" are getting better and her liver is functioning better, they opted to also provide nutrients to Sylvie through her port. It's called TPN (Total parenteral nutrition). It looks like Gatorade. The good news about this new NG tube and the TPN is that there will be 1 less alarm to go off every 90 minutes. Yeay. I'm so happy I could go to sleep right now. Small victory for mom.

After the dramas of the day, we gave Sylvie some morphine and wouldn't you know it, our old Sylvie was back! She was hilarious, vivacious, silly and adorable. Michael, Sylvie and I pretended to bake a pretend cake (like the fairies in Sleeping Beauty), opened presents, made magnetic ballerinas. Sylvie even commented that my dinner smelled good. This is big news for the family Hughes. Perhaps tomorrow she'll even eat something??? Stranger things have happened.

Only one more day of toxic tushy and we can stop wearing gloves for perhaps a whole week.

Sleeping at the hospital reminds me of camping. I roll out sheets & blankets, I shiver all night and my back kills in the morning.