“Mom! I’m home!”
I came home that evening from school in February 2009 having no idea that this day was the start of a long journey that might last the rest of my life. I started out not being able to keep food down and feeling extremely dizzy. After time, I became very malnourished and was admitted for the first time to the Children’s Hospital of New Mexico April ‘09. I was diagnosed with Vestibular Neuritis, given an NJ feeding tube, and sent home. Physical therapy cleared the Vestibular Neuritis, but the vomiting never went away. It was during this time we had trouble with our GI doc. He was thoroughly convinced I had an eating disorder and demanded the tube be taken out. Of course, we said no and kept the tube as long as we could. During our last appointment, this doctor tried to scare me out of having an NJ tube by telling me kids at school would laugh at me for having it and that I would be mortified with embarrassment. He then sent his nurse in to tell me that people die under anesthesia all the time and that I should, essentially, cut the act out. I wasn’t ticked at the time, only crying. Mom was VERY unhappy. I was able to have the feeding tube pulled October 31st, 2009, because I was able to maintain myself with an extremely limited diet. However, come February ’10, I started not being able to keep anything down whatsoever. I lasted until April ’10 of not eating or drinking, going to school, doing band, etc. I was admitted April ’10 for dehydration and some malnutrition. It was during this admission that we met Dr. James Noel, pediatric motility expert. He has been our lifesaver. He diagnosed me with Gastroparesis and sent me home with a PICC for TPN and another NJ for minimal feeding-my intestines would not tolerate anything above 12ml/hr. In June ’10, I went in for a motility study that was meant to only be an overnight stay in the hospital. Well, to keep it short, this ‘overnight stay’ lasted three and a half months. It was during this stay I got Georg, my gtube, Jacques, my jtube, my broviac, and my diagnosis of CIP as well. It was also during this stay that we discovered my chronic line infections. That is why I was in so long. At one point, I was put on contact precautions and had to stay in the same room for a month and a half X( After I went home, I was able to stay infection free for two months! In October, Mom and Dad went to Germany, placing Eli and me in the care of my Grandma and Grandpa Harman. So…story time.
The way I torture Eli is I write the first page of a story, cutting it off at a huge cliffhanger, and placing it into her backpack. Of course, she came home, fuming, and demanding that I write the second page. I made the mistake of telling her I already had page two in my pocket. As we went out to get the mail, she stuck her hand into the pocket the page was in, the pocket nearest my jtube. She jerked out, pulling the jtube with her. POP goes the jtube. That’s right, my jtube popped out. It didn’t really hurt. It just…was super surprising. Here was this gaping hole in my abdomen with my jtube lying on the sidewalk. Eli ran back to the house yelling that my jtube had been pulled out, and I was freaking out outside, trying to hold my shirt over the leaking intestinal hole as I bent over to grab my jtube. Here Eli and I were, freaking out. Grandma and Grandpa?
“Oh, your jtube is out? Okay.”
They were super calm about it. The contrast in attitude between Gma and Gpa and Eli and I was funny. They replaced it in the ER without too much trouble Eli did get page two after that. I didn’t want her to go pulling my gtube out too!
So, in November ’10, I was admitted again for an infection. During this stay, I had another motility study done of my colon. Turns out, my colon is ‘dead as a doornail’ as Dr. Noel put it. So in total, my stomach and colon are dead, and my small intestines, from the jejunum to the ileum, have minimal motility, and very abnormal motility at that. My GI system is just all wacked. In light of this information, I got Buzz, Marty, and Jacques, my ileostomy, mucus fistula, and a new jtube. I was released to go home December 14th, 2010. Just in time for the holidays. While I was in the hospital, I started this tradition I always do. I “invade” the unit with pipe cleaner critters. First it was turkeys for Thanksgiving (I was in for thanksgiving), and next I invaded with penguins. I hide them all around the unit for patients, families, nurses, techs, and doctors to find.
Another artistic touch I add to the unit is drawing. My drawings. I draw a busy picture and then hang it up on my door. I’ve done over 25 of these pictures. I love drawing, and I love bringing smiles to people’s faces.
So, from my discharge in December to about January 11th. 2011 I was able to stay home. I was looking at classes I could take at UNM and had even seen an academic advisor to plan out what classes I would take. All of this changed when I was admitted January 13th, 2011 for yet another infection. The infection cleared fairly quickly, but I got a new infection right after that landed me in the PICU for about two weeks hooked up to a bunch of machines. I don’t even remember the first half of my PICU stay. After a month, I was released home once this infection cleared up, only to come in the next day with symptoms of another infection. I started out in Peds Specialty, the unit across from my home away from home, GPU. They moved me to the adult SAC unit, the stepdown unit from the ICU. The adult unit is EEEEVVVVIIILLLL >:{D –evil adult unit guy. I was sent home in four days because the cultures weren’t growing anything.
In March, I got to go in again for a yeast infection in the evil SAC unit. My body got to the point that no one could get an IV in me minus SUPER STICK (aka Dr. Monge/Dr. Tito, one of the PICU attendings) because my veins just aren’t there. I had the IV team saying “Holy Cow!” “You have no veins!!!” and “You literally have no veins left to stick. We cannot get a line in you.” When the rapid response guys hear that Brittany Remund needs an IV, they start to sweat and start fighting over who has to go stick me. We finally got a PICC in me (by Dr. Monge) and a lumbar puncture that showed I have increased pressure in my spinal fluids, thus bringing about my diagnosis of a pseudotumor cerebri. I was admitted mid April for a line replacement-my PICC sprung an unfixable leak, so they placed a tunneled IJ and sent me home after a week. I was admitted a few weeks later in the beginning of May for a suspected line infection. It was then determined that I just had a virus and was sent home a week later. I was admitted yet again June 21st. I was in for four months. Back to back line infections. I was diagnosed with the Addison’s Disease and a suspected progressive autoimmune disorder. I had a complete colectomy October 10th in hopes to prevent line infections because I’ve lost 19 PICCs, 2 Broviacs, and 1 tunneled IJ to line infections. I’ve lost all PIV access-it’s been officially declared-if a line becomes seeded and cannot be cleared, we have to replace it with another CL instead of placing me on PIVs for a day or two. One after the next. I was alfo recently diagnosed with RSD, Reflex Sympathetic Dystrophy Syndrome. And that’s just the past year. I’ve not managed to stay out of the hospital longer than a few weeks. The hospital is more home than my actual home is.
Well, that’s everything in a nutshell. I don’t really have the patience to go into great detail…but here I am. We’re trying to keep me in Peds a while longer because the adult units just aren’t the type of care I need right now. They take forever to answer calls, and if I’ve got an IV in, I need something going through it. A delayed response to a need for a reset pump can cause my IV to blow, which is one of the least desired things of all.
