Within a couple days and further testing Mackenzie was diagnosed with a lymphatic malformation, the doctors were not sure exactly what type, due to her young age and rare presentation. As we were in the hospital Mackenzie appeared to be getting better and we were discharged with a plan to follow up in a few months.
Happy to be home Mackenzie yet again was thriving, she was climbing the stairs, following her 2 and 1/2 year old brother Ricky around the house, was happy and seemed like herself. Three weeks later her father and I were talking with our family and all agreed that although she seemed to be feeling ok, her breathing was a little off and decided to call her pediatrician. Her pedicatrician saw her the next morning and agreed that her breathing was a little off and her belly seemed distended. We were sent to Childrens ER. Upon arriving to the ER nurses and Dr thought she was fine, I asked for a chest xray due to her history, about an hour later the xray came back that indeed the fluid (blood) reaccumulated. Mackenzie was scheduled to have another chest tube placed to drain the blood. The following day Mackenzie went into have her procedure, after her procedure they were not able to take out the breathing tube. It is 1 week later and she is still on a ventilator, has 2 chest tubes, a feeding tube, a central pick line and has been put on a medication to paralyze her so she does not move. She has had xrays, ultrasounds, CT scans, MRIs, echocardiogram, lymphangiogram, 3 chest tubes and biopsys. And as we are closer to a formal diagnosis we are still in for a long road.
Mackenzie is a 13 month old who has been informally diagnosed with a very rare lymphatic disease, there have only been 30- 40 patients diagnosed this disease, mackenzie being the youngest.The prognosis for this disorder in the past has been poor. Given that Mackensie has presented twice at her young age with bleeding and fluid accumulation the doctors are concerned with the aggressiveness of her disease. The reoccurance of this can cause lung damage and difficulty recovering, ultimately it can be life threatening.
We have been hospitalized for extended length of stays at Childrens Hospital in Boston. As for the unpredictability of her disease and the unpredictability of her spontaneously getting worse we are not working, in fear of something happening while we are not there. It has been difficult to continue to make sure the bills are getting paid, to balance caring for our 2 1/2 year old son, as well as the smaller things like traveling the 1 hour back and forth to hospital, parking every day and 3 meals a day for us at the hopsital.
As for the course of treatment we are unsure of the price of her medication regimen at this time and any other further treatments that may occur with this chronic disease that we will have to try to manage throughout her life.
We are so very grateful for the support from family and friends and thank everyone ahead of time for their generosity....
We are currently at 4 hospitalizations in 4 months, can't seem to stay home longer than 1 month...
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