img_3898This week started out to be the first regularly scheduled week we’ve had in some time; Monday morning it quickly changed.  Shortly before taking Grace to her morning therapies and then school she was showing signs of discomfort and then had a tonic clonic seizure.  We gave her some diazepam (valium) to stop the seizure and called 911.  Her seizure stopped and when the paramedics arrive her oxygen level was low so they started on oxygen.  Grace was still pretty out of it and her temp was up, by the time we reached the hospital it reached 104.5.

In the ER they started checking for infection running blood and urine cultures.  She was started on an antibiotic proactively and the blood culture came back positive for MRSA.  MRSA is a staph infection that is difficult to treat, while it can be a skin infection Grace shows no signs.  MRSA is easily spread in hospitals, nursing homes, etc and considering how much time she has been inpatient these past two months she could have easily acquired it.  MRSA can live on your skin and you will be just fine but when it colonizes the infection occurs; in Grace’s case it could have come in through her central line port when the needle was inserted, but there is no way to verify.

There is a chance that Grace’s port may have to be removed if they infection does not resolve with the antibiotics.  Daily blood cultures are taken and if results are negative two days in a row she could go home and continue with two weeks on IV antibiotics.

We have been having extensive conversations with infectious disease, interventional radiology (who put in Grace’s port) and nursing supervisors as there has not been a clearly documented, communicated, or followed port protocol for Grace.  We have found that health organizations have different port protocols and there can be differences within one organization.  We continued to push for clarification so we know when to ask or question if we feel that the protocol is not being followed.  All parties are now in agreeance that Grace should follow the same hematology/oncology protocols used with other children at Blank and we should defer to hematology/oncology or the Blank Infusion Center for her port cares at any time we desire.  Grace again falls in her own category and without standards to base her treatment on we have to push the envelope to establish our own protocols.

Between the home and work needs, port issues, learning about MRSA and conversations around the potential removal of her port that was put in just two months ago we have been a bit overwhelmed.

Grace has been showing signs of more energy and is sitting up and playing on her own.  Based on past sicknesses this is a really good sign.  Now we just wait for the culture results.

Grimes/Johnston EMT staff were excellent and took great care of Grace and we got to meet one of our neighbors who is an EMT.

Kevin

UPDATE 9/29 11:10 – Blood cultures drawn on yesterday are negative!  It will continue to be cultured as will the draws from this morning; if they come back negative tomorrow Grace will likely be discharged Friday.

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