"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Thursday, July 29, 2010

July 29, 2010

What a long and strange day it's been. We're relieved to be able to return to South Shore, but unfortunately that doesn't mean all is well. The laceration Ben has on his left cornea is a major contributor to the "fold" that's pulling on his retina. Absolutely nothing can be done about that scar. There is a pocket of vitreous fluid that may also be exacerbating the fold; however, this doctor we saw today does not want to perform surgery yet. At this point the risks of the surgery (potentially causing more damage to the eye) outweight the benefits. In addition to the fold, the vessel growth behind the retina isn't centered (again because of the scar) and that can't be fixed. Bottom line is he's going to have extremely poor vision in that eye. Vision in his right eye will be better, so he'll most likely have to wear a patch on that eye so the bad one doesn't become lazy. As seems to be the case, we're experiencing what we were told at Children's would be "the worst case scenario." He'll go back to Mass Eye and Ear in two weeks for a follow-up exam and then the doctor will determine whether he thinks performing surgery to remove that pocket of fluid will lessen the pressure on the retina from the fold. If he wants to do the surgery, Benjamin will be admitted that day to Mass General (if there's a bed space) and he'll have surgery the following morning (if there's a 7:30 slot available). We never really expected to hear that they might not be able to do anything more for his eyes. It's so depressing.

I mentioned above that our day was strange as well and I feel as though I should explain. For those of you who aren't familiar with Mass Eye and Ear, there is no special ambulance entrance. Benjamin's transport system (which consisted of an incubator on a stretcher with a monitor on the top, oxygen underneath, and medical emergency bags behind) was wheeled right through the main doors and into the lobby. We, and when I say "we" I'm referring to Benjamin (who was contentedly sucking on his pacifier), myself, two EMTs, and three South Shore NICU/SCN team members (a nurse practitioner, respiratory therapist, and transport nurse), proceeded past onlookers and to the main elevators. As we were waiting for the elevator, there was a sweet little old couple incredulously staring at Benjamin. The man pointed and said to his counterpart (probably his wife, but you never know nowadays) "there's a baby in there!" She responds "a baby? A BAY-BEE??!!!" The look on her face was priceless and the way she said baby (BAY-BEE) gave us all a good laugh. Ryan had already checked Benjamin in and was there waiting for us when we reached the 12th floor. Because the contraption Benjamin was in is so large, they were trying to figure out where to have us wait and ended up putting us in a waiting room across the hall. After waiting more than an hour, the doctor came into the waiting room and decided because they didn't have an examine room large enough for the incubator, he would just do the examine right in the waiting room! At this point we were all stunned. The other patients were asked to leave, Ryan stood guard at the entrance, and the doctor actually performed an exam. Mind you this wasn't a basic 10 minute exam. Oh no, he also had a technician come in and take digital images AND another one to come in and do an ultrasound. All in the waiting room! Poor Benjamin will probably experience the same scenario in two weeks. I must say he was such a little trooper and again LOVED his ambulance ride. His vitals were rock solid as long as we were moving!

Before I say goodnight, I must thank Lori, Amy and Laura for their patience, time and assistance today. The snacks were a nice gesture too! Benjamin was lucky to have such a wonderful and competent group of ladies taking care of him, and we were just as lucky to have such great company. What could have been a potentially anxiety ridden situation for me, was instead one that we could joke about.

1 comment:

  1. As always, I find it humbling to read about Benjamin's strength. I'm so glad you had moments of humor, and lovely people with snacks, to get you through the day. Our prayers and love are with you!