Emily’s current home is a spacious (as hospital rooms go) corner room on the Pediatric floor of the U.C. Davis Medical Center. To get there, you have to wonder through a long maze of hallways and request permission at the always-locked double doors that sound an alarm if little Emily gets too close while they are open. The Peds floor is square – with patient rooms on the outer edges and nurses stations and conferences rooms in the center. There is a playroom staffed by young volunteers and nap-time from 1:30 to 2:30pm daily.
Staying in touch in Peds
Emily’s room houses a steel crib, one padded chair that rolls out into a flat “bed”, a round table with three chairs, a bathroom, a camping lounger for whoever keeps Chrissie company overnight and a convenient storage cabinet stocked by family and friends with healthy snacks. The large window is usually closed to aid with sleep and to prevent the temptation seeing the outdoors would cause Emily who very much wants to go home. The television is almost always showing a Winnie the Pooh dvd that has become Emily’s favorite.
Using her brace to say no to meds!
Caring for Emily is a full-time task right now. She’s always been a handful, but her illness has taken it’s toll on her wild side and caused her to be constantly needing attention and cuddling. Emily rarely let’s Christina out of her sight and puts up quite a fit when Momma does try to steal a moment away. Before her Broviac was put in, Emily had an IV line in her arm and a firm brace wrapped around to prevent her elbow from bending. She managed fairly well one-handed but learned quickly that her brace was useful for letting doctors and family know that she did not appreciate being given oral medications! Emily has begun adjusting to the regular medications she receives, though it still takes at least two people to administer them, and she doesn’t seem to mind having tubes in her chest or an IV cart attached to her – except when the batteries are low and she has to stay put to recharge. She does, however, mind her blood pressure being taken and hates the oxygen reader they attach to her finger, despite her brothers telling her it glows like a light-saber!
Momma, Blanket, Pacifier...all Emi needs
Emily’s main comforts, other than Momma, are her pink leapord-print blanket and her pacifiers. She has at least ten pacifiers and goes through them all each day as she tosses them to the floor in fits of temper or simply decides she likes one better than the others, despite them being identical apart from color.
Play time!
She has books and stuffed animals, pretty shoes and sparkly bows, and a few toys to help pass the time. She enjoys painting in the playroom with dot-pens and has had tremendous fun with stickers.
Not a happy girl
A side affect of one of Emily’s medications is grumpiness and we see that in full force on a regular basis. In all fairness, the dear girl is dealing with a lot of uncomfortable poking and an unfamiliar environment, so her surly mood is understood. She doesn’t nap well despite being tired and changes her mind five times in one minute as to what she would like to do. She’ll insist on playing but the minute she’s in the playroom, wants to go for a walk instead. Anyone who’s hung out at the hospital for a while has likely worn ruts in the hallway floor, as Emily’s favorite activity is walking around the pediatrics floor over and over and over and over and over…you get the point.
Every doctor, nurse, and support staff on the floor knows who Emily is and
Lap 756 with Grandma
comments on her pretty bows and dresses. They tease the family for being on the 800th lap around the halls and know to come find her when it’s time for medications or vitals.
New dress from her nurse
Emily’s own nursing staff are some of the sweetest people we could have hoped for. One of her nurses brought Emily two princess dresses this week and even gave William a present for his birthday! Her lead nurse has shared that she is a sibling of six and was homeschooled, as well. And the child life specialist, who helps patients and their families adjust to the many changes in their lives, cried when she told Christina she had noticed how supported she is by friends and family and how blessed Emily is for that reason. Emily has also come to know other patients on the floor, either in the playroom or walking the halls, and we have shared stories and exchanged prayer requests with several families.
Life in Pediatrics has it’s ups and downs. It is a blessing for Emily to have the constant care and expertise of the medical staff and a comfort for Christina to know there is help outside the door if something happens. However, everyone agrees it will be better all around for Emily to be home. The doctors all say patients heal better in their own environment. At home, Emily won’t have the stress of an unfamiliar place or the constant prodding of nurses checking vital signs. She’ll be surrounded by her siblings who can lift her spirits and will be free of an IV cart to slow her down. Christina will also benefit from being home with all her kids and her husband. The family is holding up well, but there really is no place like home and being altogether. We have all made friends on the pediatrics floor but we hope to leave it soon and not have to return!