About 2 weeks ago Presley started having some strange symptoms. It started on a Thursday night with an episode of diarrhea and then seemed to feel better. That Friday I worked and when I got home Lucas said Presley had been very emotional all day and had refused to eat. That Saturday we were heading to the Lake and Presley would not eat breakfast so we stopped at McDonalds and got breakfast, while Lucas was pumping gas I looked back and saw Presley pouring tears and again asked her a million questions about why she was so sad. She said she didn't know she just wanted to go home. And of course didn't eat her McDonalds. Lucas told her she would be fine once she go to the Lake and started having fun. She seemed pretty normal and did end up having fun that day. Then before leaving she didn't want strombolis like everyone else and asked for some left over hot cakes. We heated those up and she took one bite and started crying and said her food kept feeling stuck in her throat and said she couldn't eat. Sunday morning, same thing she was sitting at her bowl of cereal twirling her spoon in it and quietly pouring tears. On the way to church she started crying and told me her belly was growling and she was hungry so we stopped at Biscuitville and got her a biscuit, she took one bite and said it was not good, so went across the street and got her a Happy Meal, couldn't eat it. In between this time there had been random complaints like, my belly hurts, I feel like I cant pee but I need to, I feel sad but I don't know why, and of course the crying. And by crying I mean finding her pouring tears with a blank sad face, not the screaming for attention type of crying.
So this is not my daughter. She is happy and independent and spunky and not a "cryer" or a drama queen (like her sister). By Tuesday the nurse in me was trying hard to put these symptoms together. There was no fever, her urine seemed OK, she had no belly tenderness, the complaints were so random. Now she was starting to say her left eye hurt. I assumed her eye probably hurt because of the consistent crying. I called her Pediatrician and they worked her in. I just wanted to check her urine and her sugar and rule out appendicitis and thought that would possibly give some answers or at least make me feel better and just chalk this up to a weird phase that will soon pass. Her doctor took one look at her eye and I could see panic in his face. He asked how long her eye had looked that way. I explained that 3 months ago her pupil blew and we took her to her pediatric eye doctor. He looked in her eye and said nothing looked more abnormal than before (this is her "broke eye" that has a destroyed retina in it already) and told us he just wanted to keep an eye on it and would see us again in 3 months. A few days later I called and told him the eye was red but had no discharge like typical pink eye would; he asked if she was having pain and the answer was no, so again told us to follow up later. Still never did any testing.
So back to Tuesday... Her Pediatrician, Dr. Bonney sent us to Alamance Eye to have her eye pressure checked. There we met Dr. Brennan. Her eye pressure was 46. It should be between 10-20. So we have a diagnosis; neovascular glaucoma. Turns out glaucoma can cause these other strange symptoms. Very rare in children. The vessels that twisted and destroyed Presley's retina have continued to twist around and now there is one on the surface of her eye that is blocking her tear system and thus causing the build up of pressure. She started taking 2 eye drops and a blood pressure medicine. By the next day when we followed up her pressure was down to 17. Dr. Brennan was pleased and backed us off of the bp medicine and just continued the drops. On Friday, again I was at work and Lucas called and said her eye was very red again and she was holding it in pain. So I left and we went back to the eye doctor. Started back on the bp medicine and again she feels much better.
3 months ago when I got no answers about her blown pupil I called Duke, and begged for an appointment with the retina specialist who put Presley to sleep when she was 3 to do the ultrasound to rule out cancer, which revealed the vessel problem. They finally agreed to see us but the soonest appointment was months away and turned out to be set for this Tuesday.
This Tuesday we went to Duke and because Presley's case is rare, I completely understand interns wanting to see her and assess her. But of course this means a child has to endure multiple exams before ever seeing the "real doctor". She was in a good mood and tolerated this much better than she did when she was 3. Dr. Toth decided she needs to see a doctor named Dr. Freedman who is a "world renowned pediatric glaucoma surgeon". She also works at Duke and we are scheduled to see her in 4 weeks. After speaking with Dr. Freedman, Dr. Toth explained that if we only had the glaucoma to deal with there would be more options but because Presley's retina problem and no vision in that eye, our options are limited because often treating one eye can affect the vision in the other eye. Her good eye could become "a sympathetic eye", and she cant afford to lose vision in both eyes obviously. They feel like the meds will only be a temporary fix and our only reasonable option is enucleation of the eye. In lay mans terms, the removal of her eye globe and a prosthetic eye in its place. The muscles would remain intact and it would function like a normal eye but without vision.
Wow. Really God? I choose to believe You when You say Your ways are not our ways, I choose to believe You have a plan and a greater purpose. Thankful that despite my fear and pain there is a cushion of peace. I believe You planned this before she was born. I believe You will touch many lives through my little girl. Writing this is the first time I have allowed myself to cry. Its going to be hard, but that's when You shine.
Dr. Bonney and Dr. Brennan have called me many times just to update and check on her. They have given me cell phone numbers and told me to call them anytime for any reason. Dr. Brennan even met me this past Sunday morning before church to give us more blood pressure meds. They have been unbelievably concerned and attentive to her. I cant say how grateful I am for that. Dr. Brennan called again today to ask how her appointment went. I told him and mentioned that I was nervous about it being 4 weeks out and then setting a surgery date and then a 3-4 week healing time was going to cut it very close to my c-section date. He seemed concerned about that also and said he was going to call Dr. Freedman and explain our situation and hopefuly get a sooner appointment. So now we wait. And pray. And trust.
this Tuesday at Duke