March has come in like a lion for the smallest Johnston – hoping it will go out like a lamb. Lydia had been doing well earlier in the week, flashing smiles to her favorite nurses and getting her dancing legs going again. As the week has gone on, she has had an increasing amount of fluid and they have not been able to keep up with diuretics. She has been on lasix most of her life and and even with a continuous lasix drip, diuril IV, aldactarone and methazolamide in her G-Jtube, she has still puffed up so severely she was unable to even open her eyes. I’ve seen her quite puffy before but this is the worst she’s ever been. She’s taken on a Sponge Bob figure with her arms and legs still twiggy and all her edema in her head and torso. Last night she was so uncomfortable and working against the vent that they had to end up putting the vecuronium back on board to keep her paralyzed so she could breathe easier. She is now on a different medicine, Bumex in an IV drip and starting to get a little more fluid off. Her kidney function still remains good so it seems this may be a cardiac issue. She ended up getting another blood transfusion today (side note: sure glad we’re not JW’s and my god is okay with transfusions). The plan is to take her the cardiac cath on Tuesday to recheck all her pressures and flow. They are saying she may need the band on her pulmonary artery tightened which unfortunately mean yet another OR trip, another open chest incision and yet another delay in project esophagus. I keep thinking surely someday she will get a small break.
This week marked the one year anniversary of Dr. Sharp giving Lydia a surprise spit fistula and cutting away the lower end of her esophagus making the task of putting it together much more difficult and complex. Not a day goes by that I don’t deeply regret sending her to the OR that day. When the OR nurses were getting ready to take her down and Dr. Sharp decided then would be a good time to tell us she had a 50/50 chance of surviving surgery, it took every ounce of me not to scream “stop everything!” How I wish my pragmatic and calmer side had not won that day and maybe things would somehow be different. I miss her terribly and ache for the day when she can be home and meet her family.
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