Yesterday I had one of those moments where you want to crawl under a rock and hide. Dominic had gone back for his MRI and I was sitting in the hospital Starbucks pumping (that's right... I pump in public, covered of course) when the nurse from the pre-op room came in and called me over. I saw him holding the trach that Dominic had in so of course I instantly felt my stomach drop and started thinking all sorts of bad things. You see, the type of trach he normally wears has a metal coil inside of the tube that goes in his neck, and the rest of the trach is gray and clear. For the MRI we have to switch it to a all plastic one so the metal in the other trach doesn't make it pop out during the MRI (which uses really strong magnets). Well, I thought I had put the plastic one in (all white) but turns out I put a metal one in that looked like the plastic one. I felt like the world's worst mother... if the anesthesiologist hadn't caught that he would have had his trach ripped out during the MRI!
Anyway, on with the story. After the MRI, he came out of anesthesia fine and had blood drawn for more tests that the neurologist wanted to run for possible metabolic disorders. **Side note: the longer I go without working the weaker my stomach gets. I felt the urge to throw up mingled with the urge to tackle the phlebotomist when she was fishing in his arm for a vein. Whatever happened to my iron stomach??** The MRI took so long that we missed our neuro appointment so we had to reschedule for next week.
Lucky for me I already had an appointment set today to review his medical records, and thankfully the MRI report was in. It showed increased ventricle size from two weeks ago, a narrowing of the cerebral aqueduct and extra fluid surrounding the brain. I didn't write it down and could not take the report with me today (they have to mail it to me) so I don't remember the exact ventricles affected. After I was finished with Medical Records I ran into his Neurologist in the hall (luck or divine?). I told him I just read the report and he said he was going to talk with neurosurgery about what to do. He said normally the big thing they worry about with increased pressure on the brain is damaging the eyesight but this MRI was able to visualize the optic nerves well (the nerves that go from the brain to the eye) and they are atrophied, so he's not sure if the benefit of a shunt is worth the pain and risk of the surgery. If they do perform surgery, I think they will place a shunt under the skin that would allow excess fluid to drain from the brain into the belly.
I'm talking bluntly about this, but really I was quite upset today when I read the report. It's so strange... being on this side of health care. I can't count the number of reports like this one I have read about various patients, but sitting there in the medical record department, with someone sitting beside me for my 2 hour time frame, reading this was surreal. I thought of all the kids I have treated that had this type of stuff going on and how I processed the information in such a factual way. I remember talking with other therapists before going to see these kids in the ICU and just listing off their diagnoses in such a matter of fact sort of way. I do think I really did care, as did my co-workers, but we had become so accustomed to these awful reports it was just an everyday thing. Now that it's my kid, it's not so ordinary.
After the hospital visit the two middle kids and I went to mass. That is just what I needed. I was reminded of the simplicity of our faith, how all we have to do is open ourselves and allow God to transform us. He gave me such graces after communion that I felt completely open to asking Him for His will to be done, without any thought of what I wanted. Just totally open and inviting. Whatever brings Him the most glory and souls I will happily accept, and I will praise Him for the privledge of being His instrument. Just as long as I remember I can do nothing, and need not do anything, He can work in me.