Alex and Maddy

Alex and Maddy

Tuesday, May 2, 2017

Heading Home...for Now!

I am so happy to announce that we are heading home tomorrow!!! After the meeting of the minds yesterday they all came to a consensus. We know the port cannot be replaced right now. We also know our length of treatment will depend on whether the yeast is actually present in his heart. But for right now it doesn't change anything. We will head home tomorrow and continue the same treatment we were following here. Because Alex still has Pancreatitis and cannot feed he will be on IV fluids/TPN around the clock He will get his IV antibiotic 3 times a day and his IV antifungal once a day. Then we will come back on May 22nd for his port placement and the Transesophageal Echo. At that point we will determine how much longer we will need to treat. They told me depending on the echo it could be months.There is also the possibility that we will need to do a heart cath at some point to try and remove the yeast.

13 years ago, I walked into a meeting of the Keller-West Moms club, desperate to meet people before Alex was born. I made some of the greatest friends who have been a rock for Alex and I for so many years. 3 1/2 years ago I rejoined the same group so Maddy could also make lifelong friends. It has been harder for me to make it to activities and meetings, but I have watched this group of ladies give selflessly over and over. Today we were the recipient of the love they give so willingly. I am so lucky to call these women my friends and astounded about the way they have been there for us. Twice we have been forever changed by this group of moms who come together for fellowship.

I cannot begin to express how grateful we are. The kindness and love that has been showered on us has been amazing. We feel so blessed to how so many incredible people in our lives!


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