Oh What A Night

Benjamin’s rally yesterday was a good one, but brief. Last night, his temperature spiked with his heart rate staying in the 200’s, and minimal active movement except for labored breathing. After multiple assessments from nurses and doctors, a resident stopped, turned to me and asked, “as a mom, what does your gut tell you?” Well, she opened the flood gates. I told her he looks horrible, needs to go to the PICU, and something needs to be done to help Benjamin before I bursted into tears. I am not an overly crazy mom that worries all the time, so when I am worried, everyone should be worried. I made sure the physician was aware that a large percentage of angels with MTM do not survive past a year, so whatever needs to be done, needs to be done now!

The physician consulted PICU and a wonderful nurse practitioner came quickly. She requested an IV line for fluids, since Benjamin looked dehydrated. (he has pretty much been running a marathon for two days) After multiple failed sticks, the nurses had to resort to putting the IV in Benjamin’s head. (NP said he looks a little like a unicorn) Now he wants to move his arms, and I had to restrain his little arms to sleep. Around 1 am, about thirty minutes of receiving fluids, Benjamin started to turn around. His heart rate started moving closer to normal, and he quickly fell asleep from exhaustion. Poor baby slept all night long.

Benjamin’s X-ray last night and this morning showed no changes, so he will have a bronchoscope today that will hopefully clear up any blockage to his left lung.

He is more himself today swatting and trying to reach for the IV at the top of his head. His vitals look great and he is currently napping. I will work very hard to get that smile we love so much from Benjamin. Thank you for the prayers and keep them coming.

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