Yesterday was another crazy day in the Children’s Hospital. We started off the morning with our usual swallow studies, seeing a little girl with Cornelia de Lange syndrome and a 7 year old boy who refused to chew his food which resulted in his swallowing huge bites and choking. When asked why he does this and if he thinks that swallowing food whole rather than chewing it was a good idea he responded with “I don’t know.” Greeeeeaaaat.
After providing his mom with some strategies to use at home before jumping into therapy, which included having him eat in front of a mirror to watch himself chew, we headed upstairs to check orders and start making our rounds to see the patients on the floors. We saw a 15-year-old girl who has atelectisis, a pneumothorax, and had a recent bout with meningitis (and by the way, Microsoft Word doesn’t think these things even exist). She participated in a swallow study on Monday, which revealed that she was silently aspirating every time she swallowed liquids and as a result was put on a mechanical soft diet and was now only receiving fluids through an NG tube. But this was a girl after my own heart. We had given her ice chips and told her that liquids were strictly forbidden but when we turned to walk out of the room she held her cup of ice up to the light in an attempt to melt it so that she would have something to drink. The poor thing was so thirsty and we were the mean SLPs who told her she couldn’t have anything to drink. Though we had to take the cup away and gently reprimand her for trying to melt the ice, inside I was thinking “girl, you melt those ice chips…I would do the same thing if I were you!”
We continued our rounds, stopping to check in on some of our cardiac babies, before heading down for two more swallow studies. One with a 36-month-old baby with achondroplasia (aka. dwarfism) and one with a 13-year-old boy who shoved a cupcake down his throat at school along with the plastic Hello Kitty toy that was originally stuck in the icing and was now stuck in his esophagus!
But it was the next patient we visited that stole my heart. For the purposes of this post I will call her B. B has been in and out of the hospital since she collapsed at her elementary school last March and doctors discovered she had a ganglioglioma (a scary, cancerous, tumor) on her brainstem. Though doctors did their best to remove the tumor it had become woven into her spinal cord and they were unable to get rid of the whole thing. She has since had multiple rounds of radiation and on Monday she received a tracheotomy. The trache was put in to help her breathe more easily but because it is below the level of the vocal cords, air no longer passes through the larynx and she is no longer able to speak. Unfortunately, her parents did not completely understand (and therefore did not explain to B) that when she woke up from surgery she would not be able to talk. You can imagine how this sweet little girl was feeling when we went to see her just 24 hours after the surgery. But we were there with good news for B. We were not there to poke or prod her but we were there to tell her that in just one week we would begin to help her learn to use a Passy Muir speaking valve on her trache that would allow her to talk again! I don’t think she completely understood what the valve would allow her to do, especially since we were able to read her lips when she mouthed, “a valve?!” with a look of terror in her eyes. But we comforted her and let her know we were there to help her get her voice back and pretty soon she was smiling and showing us her new Glee DVDs. I can’t wait to be there when she is able to tell us out loud how she is feeling and her parents can hear her voice again!