Aug. 15, 2014
Today started out as a pretty normal day. The kids and I took our new puppy Cassie to the vet for the first time and then hoped to spend the rest of the day doing some fun summer stuff. But after we got home, Emily started complaining that her left eye hurt, specifically her lower eye lid. I checked to see if maybe an eyelash or something else was in her eye and that's what was causing the irritation, but I didn't see anything. I flushed out her eye well with some saline drops and she went back to playing. A few minutes later she came back complaining of the same thing. I didn't see anything wrong but repeated the drops again. By the third time she came back to me, now crying in pain, I knew something else was going on. I gave her some antibiotic drops and Tylenol, and told her that it might help if she went to lie down in her bed and rest her eyes. A little while later I heard her crying for me and running to the bathroom, to throw up. Not a good sign.
My immediate thought was that she either had a stomach bug or strep throat. Strangely enough Emily doesn't get a sore throat with strep, she throws up and gets a fever. So if she developed a fever I knew we would be headed to the doctor. She threw up one or two more times, and then eventually fell asleep in bed. I kept checking her for a fever, but she never felt warmer than normal. A part of me wondered if the upset stomach and eye pain were related, but it didn't make much sense at the time. I thought about when we were at the Vet's office earlier, she was touching the exam table and had pet another dog that was in the waiting room. Maybe she had touched something and then rubbed her eye, causing the irritation? But how did the upset stomach come into play? Could it be a complete coincidence that these two things happened at the same time, but weren't caused by the same thing? I wasn't convinced. I kept checking Emily's eye throughout the night, it did begin to get irritated and bloodshot and she continued to say it hurt. I had hoped that overnight it would resolve itself. Although it was her left (bad) eye, I was still concerned about it being an infection that could spread to her right eye.
Ironically we were supposed to go to the Ocularist to get her painted prosthetic lens the next day...obviously we needed to cancel that appointment which was disappointing since we were making such good progress with the lens.
Aug. 16, 2014
I woke up before Emily and went in to check on her. She didn't feel like she had a fever and hadn't thrown up all night. I was really hoping she was better, sadly that wasn't the case. When she woke up, her eye was even more red and swollen...and it was a lot more painful. I gave her more eye drops, Tylenol and let her put a warm wet washcloth over it to see if that would help at all. It didn't seem like pink eye, there was no discharge and it wasn't itchy. Because it wasn't a cornea related issue, my first instinct was to call Dr. Kane...but it was Saturday. Why does it seem like all emergency issues happen on a weekend when you can't get in touch with your normal doctor? Am I the only one this ever happens to? Because it happens almost every. single. time. Anyway, I had Dr. Kane's cell phone number, because in the past we've had to reach him for surgical follow up issues when his office was closed, but I didn't think that was his weekend emergency contact number. I called his office line and got a message that said the office was closed for the next week...wait, what?! Ugh, frustration set in and my blood pressure began to rise. The message said that he could be reached at his emergency number, which apparently is his cell. But in my head, I knew if he was on "vacation" from his office, that he was at his upstate NY home, which was over 2 hours away. I know this, because Emily and I were invited to visit there once after she had surgery just before Thanksgiving one year. IF she needed to be seen...either he would suggest going to NY Presbyterian emergency room, or up to his NY home. I didn't want to interrupt his vacation if I didn't have to, so I called Dr. Morgan, who is her more local Ophthalmologist. If anything, he and the hospital he works out of were a lot closer than going to NY.
Around 9:30 am I called Dr. Morgan and of course got his emergency line. I had his service page him. Over an hour later he hadn't called back, so I had him paged again. Another hour or two passed. Within that time, Emily had thrown up again, which was strange since she was fine all night and had eaten something earlier. I called a third time...this time I received a phone call within a few minutes. He apologized for not returning my calls earlier, apparently he was at the gym and someone went into cardiac arrest and he had to do CPR to save the guys life. OK, valid reason for not answering a page. I explained what was going on with Emily and he suggested that he call in some oral antibiotics, Augmenten specifically, to try and get some more meds in her system since it seemed that there was some kind of infection going on. When I mentioned that she had recently thrown up again, he said that if she can't keep the medicine down that we would have to bring her to Morristown Hospital where she would need to get IV medication. Wonderful. If she was able to keep it down, he would call us first thing the next morning (Sunday) to see how she was doing.
He called in the medicine to the pharmacy right away, except when I got there to pick it up, it was Amoxicillin instead of Augmenten. I figured that maybe he changed his mind on what to give her and didn't really question it. Thankfully she was able to keep the meds down and spent the rest of the day sleeping on and off. She would wake up asking for another warm washcloth for her eye and then go back to sleep. It was obvious that whatever was going on, really was taking a toll on her body and not just her eye.
Aug. 17, 2014
Dr. Morgan called just after 9:00am on Sunday morning. Unfortunately the antibiotics had not helped because Emily's eye was much worse than it was the night before. He suspected that it could be more than just an infection, that maybe it was a pressure related issue and he was going to contact a retina specialist to consult with him on it. He would call us back in an hour and let us know what we should do, suggesting it might be necessary to bring her to the hospital. After hearing that, I prepared for a hospital visit just in case and then waited...and waited...and waited. I knew in my heart that this wasn't a pressure related issue. Her eye wasn't functioning at all since she lost all vision a couple years ago, so there was no reason for a build up of pressure. It made no sense to me. I tried calling him back on his cell phone a couple of times and left multiple messages. It had been over 3 hours since we had spoke and with the amount of pain Emily was in at this point, I made the decision to just bring her to the Emergency Room. Her eye was getting worse and I couldn't wait any longer to get her help.
On our way to the hospital, I called and left another message telling Dr. Morgan that we were on our way down. We stopped and dropped off the boys at my parents house and then made our way to the ER. When we got there I told the nurse that I had been talking to Dr. Morgan and explained the whole ordeal over the last 2 days. I also called again and left him another message letting him know we were now AT the hospital. When we were finally seen by the ER doctor, I was told Dr. Morgan had called and spoken to them and told them he felt it could be an issue of high eye pressure. They insisted they try to take her pressure, give her 3 different glaucoma drops and start an IV for fluids and antibiotics. If it helped to reduce the eye pressure, redness and swelling then they would have some explanation as to what was going on. But I knew the eye pressure concern was a waste of time. Dr. Morgan did call me and tell me that he spoke to Dr. Lalin, a retina specialist, and this is what they felt would be the best course of action to start with. I told the nurse and the ER doctor that she had dealt with high eye pressure in the past, we know exactly what it looks like when the eye is bulging or a bubble forms in a weak spot of the cornea graft. This was not that AT ALL. At that point I bit the bullet and called Dr. Kane. I hated to do it, but I knew the doctors were going in the wrong direction with this.
Dr. Kane immediately agreed with me that this was not a pressure issue, but by that point they had already given her the glaucoma drops and were waiting to take her pressure again. He felt very strongly that there was an infection of some kind going on and that either an ultrasound or a CT of her eye was needed to make sure the infection wasn't inside or behind her eye. What he said next made me feel like I got punched in the stomach and stabbed in the heart at the same time. If the infection was either inside or behind the eye, it would be necessary for them to do one of two things; either do surgery to go in and clear out the infection, or remove her eye completely. I felt sick. I wanted to throw up. I wanted to scream at the top of my lungs that this wasn't fair. I was not mentally prepared for that at all and emotionally it would wreck me. It would damage Emily's spirit and I couldn't imagine how she would handle losing her eye completely. This just couldn't be happening, not now, not to her.
When I got off the phone with Dr. Kane, I explained everything to Jason and inadvertently Emily overheard the part about removing her eye. She started to get upset and crying about not wanting them to take her eye out. I tried to reassure her that I would do my best to make sure that didn't need to happen. I quickly found the ER doctor and explained that Dr. Kane insisted they do an ultrasound or CT. There wasn't an ultrasound technician on duty that would be qualified to do it on her eye, so we were forced to do the CT, which was fine because it would show in more detail what was going on. Within 10 minutes she was brought to radiology. They ordered the CT with contrast and I waited outside in the hallway. I remember standing there saying a prayer quietly, but out loud. "Please let her be ok, please let her be ok, please let her be ok..." I probably said it 50 times or more before she came out of the CT room. Images of her with no eye kept flashing through my mind, I had to force myself to push the thoughts of her wearing a full prosthetic eye for the rest of her life out of my mind. I just couldn't go there. Now, we had to wait for the results.
Back in the ER room, we sat...and waited, and waited, and waited. Emily's eye was getting more swollen and her pain level was increasing. While we were waiting for the CT results, they gave her a dose of morphine to try and help alleviate the pain she was in. A short while later the doctor came in and said that the CT showed a fluid pocket inside her eye which could be a sign of infection, but nothing was seen behind the eye, which was at least some good news. I couldn't help thinking that since her retina had detached a couple years ago, is it possible that the retina was what the radiologist was seeing as a "pocket of fluid"? Maybe, just maybe, it wasn't what they thought it was. Because of the location of the "fluid", a retina specialist would need to determine the next course of action. They decided to admit her overnight in hopes the IV fluids and antibiotics would help and that by morning the swelling would be less. Ironically they never bothered to re-check her eye pressure so I guess Mom's do know what they are talking about sometimes. I just wish they would have listened to me from the beginning, it would have saved some time and aggravation.
The silver lining of todays ordeal...A good friend of mine is a pediatric nurse at Goryeb Children's Hospital in Morristown, where we were, and I had texted her earlier to let her know Emily would probably be admitted overnight. She just happened to be on duty that night and we were lucky enough to have her as Emily's nurse! What a blessing because it put me at ease knowing that Emily would be in excellent hands! We were able to get situated in a room and chat for a little bit about what was going on. It was nice to see a familiar face, one who already knows so much of Emily's medical history. Jason's brother and his family happened to be passing by the area and decided to stop by to see Emily and say hello. At first when they arrived, Emily seemed to be awake enough to know they were there, but she sat up in bed and the morphine must have kicked in...wow was she loopy! I haven't ever seen her like that before, it was kind of scary, but we knew it was the meds and that it would wear off as she slept. Then I noticed something really weird. As Emily was taking a sip of juice, her face started to get all blotchy, not all in one place, but in random spots. Christine, our nurse, also noticed it, but then it was gone! Weird. She at first thought it could be a reaction to the morphine, so that's what we were attributing it to. But as it kept happening over and over again, we got to thinking...what else could it be from? There was no rhyme or reason to it, it showed up in different places each time and was gone as quickly as it showed up. Then I remembered that she had the CT with contrast...could it have been a reaction to the dye? We might never know, but within a few hours it stopped happening. We settled in for a long night, and tried to get some sleep, we knew the next day would be a difficult one.