Aug. 18 - 21, 2014
As hospital stays usually go, you don't get much rest...which seems counter intuitive because in order to heal or get well, rest is usually the first thing your doctor tells you you need. I get it, nurses have orders to take vitals and dispense meds at all hours of the day and night, its their job. Christine always made sure she was super quiet and quick...letting us go back to sleep right away. No bright lights switched on or loud sudden entrances into the room. Most nurses just walk in like its 2:00 in the afternoon and everyone is wide awake! I truly appreciated how much she tried to avoid disturbing Emily.
When we woke up Monday morning, they brought us breakfast and we actually had to switch rooms. After we ate breakfast, Dr. Morgan came in to examine her and told us that he personally looked at the CT and in his opinion the pocket of fluid inside her eye was really the retina that had detached, not a sign of infection. So it appeared, at least for the moment, that no surgery would be needed, THANK GOD. However, once she was discharged we would need to see a retina specialist just to be sure. He diagnosed her with Periorbital and Orbital Cellulitis, which is an infection of the interior and exterior skin surrounding her eye and inside her eye socket. I didn't get very much detailed information about what any of that means or what causes it, so I of course googled it.
Basically everything I read says that it can be caused by one of a few different types of bacteria, most commonly Haemophilus influenzae, Staphylococcus and Streptococcus. The first of these three , Haemophilus influenzae, is the common cause for sinus infections, but Emily wasn't sick prior to showing signs of the eye infection. She also didn't have a Staph infection or Strep, although I was suspicious of Strep on the day this began because she had thrown up a few times. So how else could she have gotten this? Other ways bacteria could infect the eyelid or skin around her eye include scratches, insect bites and other skin injuries...none of which she had. I started thinking outside the box and only came up with one other possible reason...water. It was summer after all and she had been swimming in my in-laws pool 2 days before she showed any symptoms, and in the lake at my moms house a day or so before that. I asked Dr. Morgan if bacteria from the water could have gotten into her eye and caused this infection, he said it was "possible"...but without a scratch or place for the bacteria to enter the skin, it wasn't likely. We will never know how or why this happened, which is frustrating because we want to make sure it never happens again!
One of the biggest risks involved with orbital cellulitis is that if it isn't treated quickly enough, it could cause permanent damage to her eye and cause blindness. While the issue of vision loss wasn't a concern because she already had no vision in the left eye, I was scared out of my mind that it could spread to her good eye. I asked probably a half a dozen times and I was always reassured that there was little chance of it spreading. There is a "wall" so to speak (called the septum) that acts as a barrier between the eye sockets. I was of course relieved to hear that but still scared...you never know what can happen.
Emily had been on very strong IV antibiotics, fluids to keep her hydrated and a round the clock series of eye drops. Thankfully the nurses and doctors trusted me to give her the drops, it made me feel like I had some control over helping her get better. The nurses had to scan her bracelet and then scan the drops so there was record of them being given, but they often scanned them all and left them with me to give to her 5 min apart. Monday was rough, I could barely open her eyelid to get the drops in, and the swelling seemed to be continuing to get worse. The infection wasn't responding to the antibiotics as quickly as we had hoped. Jason and I had both stayed with her Sunday night, but there was only room for one of us to stay the next night, so Jason took the boys home and planned to come back the next morning. Needless to say I didn't get much sleep. Nurses for both Emily and the girl she was sharing a room with were in and out all night and the awful chair that converts to a bed was ridiculously uncomfortable to say the least. I tossed and (tried) to turn, but all I could do was worry about her. I should have asked if they had any Xanex available for parents...it should come as an add on to your meal choices for each day. Seriously.
When Dr. Morgan came in on Tuesday with the on call doctor who had seen her the day before, they both agreed she had begun to turn the corner. Yes, the swelling was bad, but it wasn't getting any worse and looked slightly less red. She would remain on the IV antibiotics and eye drops, and stay overnight again that night, with hopes she would be able to go home the next day. I wasn't prepared for more than 1 night in the hospital. But to be completely honest, I would keep her in the hospital for weeks if its what was necessary to get rid of this infection. I hated seeing her like this, but once again she proved to me that nothing will keep her down. The child life specialists came to visit after the doctors left and brought her some paints and playdough to play with. And the second she could get up out of her bed, IV attached of course, she wanted to walk down with her IV pole to the playroom and get back to being a kid. It was so good for her, and us too.
Wednesday morning, things looked better, not drastically, but there were improvements. The on call doctor and all the residents made rounds in the morning, just as they had done everyday. I kind of felt like I was on Grey's Anatomy with the head resident presenting Emily's case and everyone else answering questions about her condition and meds. I was able to be part of it and ask questions myself if I wanted to, but most of the time I just stood in the background and listened. A decision had been made to transition Emily off of the IV antibiotics and onto oral medication to prepare her to be released. But they agreed that she should be kept overnight once again so that they can monitor how well the oral meds are working. I agreed that it made sense to keep her one more night to observe how things went once off the IV. She would be on 2 oral meds, an antibiotic and a steroid, plus all but one of the eye drops she had been on so far. They stopped the Timolol since we knew it wasn't an issue of eye pressure.
We made it though one more day, spending a lot of time outside the room, now that she was free of her IV it was easier to move around the floor. Emily loved the playroom and even spent some quality time playing with a younger girl with cancer. The simplicity of the two of them playing seemed so innocent, just two girls being kids, despite the difficult pain and suffering they both shared in their own way. It heartwarming and heartbreaking at the same time, very bittersweet. That night, just as she had previously, Em spent some time in the media room playing video games with Matthew and Tyler. We even went back down to the playroom and had a family game of Sorry. I could tell Emily was feeling a little better because she got bored and kept leaving the game to go play with other toys. So I won for both of us :)
We ordered just about the same things as we had been from the hospital cafeteria for every meal. Emily would only eat either the chicken fingers or mashed potatoes...she even asked for them at breakfast and I had to say no, even though I'm sure we could have gotten them if we really wanted to. Thank god for the small snack room where we could replenish simple things like juice, soda, Lorna Doone cookies, crackers...and coffee. Its basically what we lived on since the meals were, well...hospital meals. I think that speaks for itself. Sadly our days at the hospital were becoming more routine, and it almost felt like we were "settling in". I hated feeling like that, it wasn't home, this place wasn't comfy or cozy. It was designed to help kids feel more comfortable, but it shouldn't ever feel like home. I had a feeling that the beautiful bald headed little girl in the playroom felt more settled in than we did and that makes me sad. This was hopefully our last night here and I was getting antsy to go home. We lucked out and had our less than desirable roomate leave during the day and were able to move over to the larger side of the room, and hoped that we would be able to get a better nights sleep without noise from the other side of the curtain. Jason brought home alot of the bags of "stuff" we collected over the last few days including most of the stuffed animals and gifts friends and family brought her when they visited. I couldn't fall asleep...too many things running through my mind, so I stayed awake watching TV until it automatically shut off around 11:00. I eventually fell asleep but was woken up around 1am with the noise of another patient coming into our room...a baby, who was coughing and crying on and off all night. The second I fell asleep...he'd cry and wake me up. Yes...I was ready to go home.
Thursday morning I was up and ready before I normally would have been. Jason arrived and we were ready to go home...except we had to wait...and wait...and wait. The doctors were later than normal for rounds, and we were helpless without discharge info and scripts for medication. I was crawling out of my skin. Emily's eye looked alot less swollen, still red, but not nearly as much. If they didn't discharge her today I might have seriously lost my mind!
Eventually we were cleared to go home and no one was happier than Emily, she missed our two dogs, one of which we had just adopted days before she ended up in the hospital. She was scared Cassie wouldn't remember who she was. I assured her that no one, even puppies, could ever forget her! We left with instructions to see a retina specialist, Dr. Lalin, in a few days and numerous scripts for meds. The nurses were kind enough to send us home with the remaining pre-dispensed dosages that she would have been given that day, which was a blessing since it meant we didn't have to rush to the pharmacy. We could just go home and rest.
We hadn't planned on a 5 day hospital stay, but we got through it. It wasn't easy on any of us, but Emily was probably the most tolerant of the situation. She was the one going through this and incidentally was the one who complained the least. God Bless Her. I wish I was as strong as she is.
The photo below shows a good side by side comparison of what her eye looked like on Monday, at its worst...and then on Thursday after we were discharged. On the left, she couldn't even open her eyelid it was swollen so much. On the right, there was still some interior redness and swelling, but it was much, much better.
Needless to say, the puppies were super happy to see her when we got home :)
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