Harper will be having two surgeries at 9:30am on Monday July 22, 2013
- Gastrostomy tube for feeding and hydration issues
- Nissen Fundoplication for gastroesophageal reflux difficulties.
The surgeries are at Medical City Dallas and will take an hour and a half. Because she is non verbal, and severe special needs, a surgery that typically releases next-day will require her to go from OR to Pediatric ICU (PICU) for pain management and monitoring for any post surgery complications.
She will stay there overnight and be transferred to a room on a regular floor for discharge. If all goes well we could be discharged as early as Wednesday or as late as Thursday, depending on how long they would like to keep her in PICU. Most likely they will keep her in PICU for 2 days putting us out on Thursday.
In January 2012 a severe increase in seizure activity stole Harper’s abilities including her ability to eat and drink by mouth.
She aspirated her food and contracted pneumonia which lead to a bacterial infection RSV putting us in the Pediatric ICU for a two week recovery in February 2012. We left there with a Nasogastric Tube (NG Tube) and the opportunity for Harper to attempt to regain her oral motor skills.
For a while Harper was doing well.
In October 2012 after reevaluation it was recommended we G-Tube for hydration only as she was doing well eating by mouth but not drinking thin liquids. We kept working at it, but then in April 2013, at age 3, Harper’s seizures increased again and she refused to drink from anything (bottle, straw, cup, syringe).
She has had the Nasal Tube in since May 2013 and after 3 consecutive months it is beginning to bother her throat and nose and now she is refusing to swallow all together. At this point she still has a strong chance of only having to use the G-Tube for hydration and meds and being able to eat by mouth.
However, if we delay this surgery we run a high risk of losing all oral motor function.
We gave it our best shot, she worked hard over this last year and a half and I am very proud of Harper’s efforts. This is a procedure we were doing our best to avoid. Her life is already hard enough; her comfort is the most important thing and right now she is uncomfortable. Therefore, this cannot be avoided any longer.
The positive side is that Harper will NEVER again have a tube in her nose and tape irritating her pretty face. We will NEVER have to worry about her nutritional needs in times of illness or bad seizures. She will NEVER have to taste another awful medication….sister is a little jealous of that bonus feature as she chokes down her vitamins this morning. We still have faith Harper will be able to regain oral motor function and eat by mouth very soon.
