Emma Update…Many people have asked me why Emma has had so many ER visits recently and why she has been admitted this weekend. First, thank you for asking, caring and sending healing love. The hospital can be a very lonely place.
Second, the good news is that Emma’s blood cultures have not grown anything SO we will hopefully be discharged home tomorrow.
Third, why is Emma in and out of the hospital/ER. When Emma contracted RSV this winter the acute infection caused major issue for her intestines. Emma has always had (since birth) slow motility. She has medical NEC as a preemie and this has caused ongoing issues. When she got the RSV her bowels became so sick and she has the most severe case of Pneumatosis (gas cysts on the bowel wall) that both Children’s and MGH have seen at her age. This was not good. Because Emma’s bowels needed complete gut rest she had to have a central line placed so she could receive TPN (Total parenteral nutrition (TPN) is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. The method is used when a person cannot or should not receive feedings or fluids by mouth). The hope was that with a few weeks gut rest Emma would be able to come off the TPN. Well this didn’t happen. Emma was eventually discharged home on TPN and a enteral feeding tube. Going home with a central line is risky. She is at risk of infection daily. To get Emma off the TPN her gut needs to be working and working well. She needs to be able to tolerate G-Tube feeds or more feeds by mouth. (Yes she is allowed to eat anything she wants by mouth). However, because her intestines cause her so much pain she doesn’t want to eat and because she does not have regular Bowel movements we cannot increased her g-tube feeds, and therefore she is stuck on the TPN.
Emma’s case is quite complicated, and we have multiple Doctors that we work with and are helping to manage her ongoing complex medical needs. We are currently discussing if getting an Ileostomy will be the next step. Due to Emma's medical challenges she has multiple medical appts a month, spends time in and out of the ER, and risks a hospital admit from just a fever. Our main priority is to keep Emma safe and help her progress toward getting her central line out. We also work very hard to keep Sophia's life as normal as possible while her sister endures countless hours in the hospital.
I hope this helps answer many of the questions people have asked me. Please feel free to ask any more if you have them.
As always thank you for ALL the support, love and prayers.
Our village makes this journey much more tolerable!!
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