This word, "acceptance" -- and phrases and words like acceptance -- have been pushed on me of late by more than one person and from many different angles. Reading, talking, trying, and crying my way ever so closer to this allusive state of being and I am now being tested -- all when I think I just might give my interpretation of acceptance a try:
Willem's surgery to put in his broviac was successful but he is having trouble breathing and his oxygen saturation levels are dropping. He is currently in post op fighting any attempt to give him oxygen...
We told the doctor to let us go back there and help Willem and they finally agreed. We arrived to find our boy struggling. Struggling for air and struggling against attempts to give him air.
To make a long story short... They just needed mommy and daddy in there to do some tough love. He kept the mask on after we got in the room. We also did some visualization techniques and worked as a team. Willem agreed to leave his mask on for x time to get y time in breaks -- even agreed to hold the mask so I could rest my arm. My ruse.
Heart Rate (HR)150 BPM; Oxygen Saturation (Ox) 80; and Respiratory Rate (RR) at 60+ means he goes to PICU. Docs talked of ventilating and I got a little upset and said to give it some time because he started to get better with mommy and daddy in with him.
7PM
Where he's at now: HR 119; Ox 98; RR 35-52; BP 93/20 (all good stuff) RR needs to drop and stay dropped or he goes on the ventilator.
Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.
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