This has been one heck of a week. Between Caleigh and Eric, our family of three showed up to 11 doctor's appointments. Eleven. I'm pretty sure that was a record for us. A number I don't want to repeat anytime soon.
Eric is doing good. He had a regular doctor's appointment and also several dentist/endodontist appointments. His root canal is healing well.
For Caleigh, her trouble started Saturday morning with a bloodshot left eye, some nasal congestion and she complained of a headache. I was thinking allergies, so we laid low all weekend. Monday morning she was still feeling yucky, so I called the pediatrician to see about a different allergy medicine. All children's allergy medicines have some sort of sugar to them. We haven't found one that Caleigh can tolerate yet. I went that afternoon and picked up a sample of a different nasal spray. The age on that one was 6 years old. We decided to wait until the morning to give the first dose just in case she had a reaction.
Tuesday morning only the eye issue was remaining and the skin around her eye was pink and swollen. I thought, ok, so it must be pink eye. We didn't give the new medicine. I made an appointment and saw the nurse practitioner that morning. She didn't think it was pink eye, but maybe an irritation caused by allergies that was trying to get infected. Not contagious. She did give us some drops as a preventative and we started those as soon as we got home. They burned horribly, and Caleigh acted like she wanted to crawl out of her skin when we put them in.
Wednesday we went ahead and had PT and we stayed home the rest of the day. By Thursday the redness on the skin had spread and at this point I was getting a little worried. I made another appointment and we saw the pediatrician that morning. She stopped the drops and switched to an antibiotic ointment. She noticed some white spots in Caleigh's throat and noted it was red as well. The rapid strep test was negative, but she sent it off for culture. She told me to do the ointment and then call her the next day with an update. At this point she was thinking it was conjunctivitis, pink eye.
Friday morning Caleigh woke up with tiny blisters, about 4-5 along the upper and lower lids. I called the pedi again and she told us to go to the eye doctor. At this point I was thinking it was one of two things. Either a fungal infection or a cold sore.
We got into the eye doctor and it ended up being Ocular Herpes.
Now I've had fever blisters, cold sores, whatever you want to call them, for as long as I can remember. They pop up at the most inopportune times in my life. School photo day, weddings and basically anything big and stressful. I get them from being sick, stressed, eating too much chocolate, hormonal issues, weather changes and getting too much sun exposure. Pretty much at any moment. The difference here is that mine are always on my lips or nose. As a kid I was told horror stories about people getting them in their eye from not washing their hands when they have one. Because of this, I'm a crazy hand washing lady when I have one.
The thing with this virus is that you can be exposed at any point and then it just lays dormant until it is triggered to come out. The articles that I've read suggest more than 25 million people have the facial type and only about 500,000 with the ocular type. Leave it to my kid to get the more rare version. My family has history with these things and I'm sure at some point I gave Caleigh this virus. In fact, I've had one fever blister after another for the past month. The thought that I gave Caleigh something so incredibly painful is making my heart hurt. It sucks. We can't even use the over the counter numbing ointments because of the location.
Ocular Herpes Simplex is a different ball game. It's kind of scary actually. It can cause scarring to the cornea and even blindness. The outbreak that she has right now isn't on her cornea. It actually started in the white of her eye. We have an ointment to put on 5 times a day but it doesn't take the pain away. We also have an oral medication to keep it from spreading. The medication contains sorbitol, a sweetener, that we haven't experienced yet. If it's like the other sugars, she probably won't be able to take it, but we decided to try. As of this morning, she threw up the dose, so we'll see. We take her back to the eye doctor in two weeks.
The strep culture at 24 hours was still negative. Most likely she initially got a virus which caused the congestion symptoms, and consequently, her eye to breakout. We will watch her very closely while it heals and add this to our ever growing list of diagnoses.
We also had appointments with neurology and Caleigh's surgeon this week too. Neurology was fine with no real changes. We will continue to go up on the Artane as Caleigh tolerates it. We will also be meeting with a team, working on getting iPads paid for by insurance, in January. They need someone familiar with the programs and we need help with positioning, mounts and independence. I'm hoping to get a little something out of it, but I don't have super high hopes.
Tuesday morning was our appointment with Caleigh's surgeon. He is actually moving to Eastern Tennessee Children's Hospital in Knoxville to be the chief of surgery. He will also teach at The University of Tennessee. His move comes from the need to be closer to his parents in Atlanta as they get older. We sat and talked about the old days, how Caleigh is doing now, our options if future surgery is needed, his partners and his decision to leave Texas. He tried to get us to move with him. I can't express how I feel about this man. He's like family. Such a selfless man. He has saved our daughter repeatedly. He is our safety net. When we walk into a room we don't have to go over anything with him. He knows Caleigh and that is a huge relief. Caleigh and I made him a going away card and he gave us his contact information at the new hospital. It was a sad appointment that brought back a lot of memories for me. He will be greatly missed. We are happy for him and his new journey. We left with a "cross our fingers and pray that Caleigh doesn't need anymore surgeries" comment. I have a feeling this won't be the first professional in Caleigh's life that we will have to say goodbye too. That's just the way life is.