Lucas Camilo

On Monday we had a major medical adventure: a six-hour long trip to Children’s Medical Center for a supposedly routine MRI.  It turns out that, despite Lucas’s severe muscle weakness, he can in fact move his head when he’s trapped inside a tube with his arms buckled to his sides and horribly loud siren sounds going off all around him!

Having never experienced an MRI ourselves we assumed it wouldn’t be that different that the multiple CT scans that Lucas has undergone over the past 20 months.  And unfortunately no one really prepared us in the weeks leading up to the MRI.  We asked to not have Lucas sedated, explaining that he doesn’t move much and that he’s never had to be sedated for other such scans.  But none of the nurses responded that a brain MRI takes 45 minutes and that Lucas would get strapped down with his head locked in the middle, staring straight up.  Had we known this we probably would have thought twice about sedation.

For starters, we had to change Lucas’s trach tube since there are bits of metal in his usual Bivona trach (the Shiley we switched him to is all plastic and thus wouldn’t be effected by the powerful MRI magnets).   Then we waited for a couple hours for who knows what, and then finally they started wrapping Lucas up in this crazy contraption.  We found out then that his head would have to be held mid-line, facing straight up to the ceiling, his least favorite position.  Even before Lucas was rolled into the MRI room the tears were already flowing.

The trip into the MRI room was shaky because they had to switch him to the MRI-safe vent and didn’t have the proper respiratory equipment to make the transfer.  Meanwhile, we had been told that he could listen to music but instead they stuck giant plugs on top of Lucas’s ears, eliminating that possibility.  Still, we got settled and gave him a final suction before sending him into the abyss, with Krista standing by the machine to hold the end of his foot, which was popping out of the machine.  Then five minutes into the lengthy procedure, with Lucas’s heart rate spiking and the two of us becoming increasingly traumatized, we realized that his head was in fact moving and made the call to take Lucas out and bring in the anesthesiologist.

Ultimately we figured out that they had been unprepared for Lucas, with his trach and vent, as apparently no one had really reviewed his file and made a call about what would be needed.  It’s a complicated situation that gets us thinking about responsibility with a medically fragile child: should we have made more calls in advance of the appointment, should the complex care doctor have done more to prepare us and the radiology department, or should the hospital bureaucracy be more on top of things as it relates to kids like Lucas?  At any rate, by the time it was all over and Lucas was awake and ready to roll, we were four hours late to see the neurosurgeon, meaning that we had to reschedule that appointment for another time weeks down the line.

So after all that we won’t get an official read on the MRI results for some time.  We did hear from one doctor that the results could show a slight increase in the size of his ventricles (you may recall that this was a big issue back when Lucas’s hydrocephalus – or excess fluid in the brain – nearly led to him getting a shunt) but that it’s probably nothing to worry about.

In more positive news, we had a new nurse come for the first time in a few weeks today.  Her name is “Tope” and she seems to be very diligent and determined to figure out Lucas’s sometimes complicated schedule.  There’s less than 2 weeks until Victor returns, but with Burke heading off to Seattle next week it’s nice to get someone else ready to help out.  We want to thank all our friends for stepping up during the two weeks in which we didn’t have a second nurse.  Various people stopped by for a few hours to play with Lucas while whichever one of us was around got some work done in the adjacent room, and it was a big help.  While “babysitting” usually implies parents leaving the house, these hours that we were able to consentrate on other things while Lucas was happily entertained felt like real babysitting to us!