We started this long journey on Friday July 10th 2009. Keith was complaining that morning that his eye was bothering him and that he could not see. i took his glasses and washed them thinking it was just dirty glasses again. Then about an hour later he told me that he could see "bugs" in his eye. I went over to him and looked in his eye to see if he had anything in his eye that could be causing him the trouble. When I could not find anything I tried to clean out his eye with cold water. It did not help....When I asked him to describe exactly what he saw he said it was like a big black bug in his eye that he could not see through and that holding out his stretched hand in front of him, it was about an inch big. So I called my pediatrician and said that I was not sure if I was being an over paranoid Mom or not. She said to bring him in because you can never be too careful with the eye. I brought him in, that afternoon, and the Doctor put dye in his eye and held up the black light to it to see if there were any scratches to his cornea. There were none. Now to take a step back Keith was diagnosed at age 5 with amblyopia (lazy eye) in his right eye. He was supposed to go to his regular ophthamologist check up on the following Monday. So the doc said that she thought we could wait until then unless Keith had anymore problems over the weekend. So that Monday we were thinking that it would not be any big deal, so we took all three of our kids to the appointment and had the van packed to head to the beach. The Ophthamologist decided to dilate his eyes to get a better view of what was going on with him. After a 20 minute exam and her partner looking as well we were told that his optic nerve was swollen and that there was alot of cloudy fluid in the eye. She seemed to think that this could be caused by cat scratch fever. She said that this was beyond her expertise so she called a colleague that was a retinal specialist and told us that they would see him now and we had to go straight over. When we got there we had to wait awhile then we went in and all the docs took turns looking at him and seemed to be in awe. Saying that this was not a usual thing to see in a healthy young boy. The doc then said we needed to go over to the hospital cause he ordered a full blood work up. Poor Keith had spent the last 6 hours being looked at and poked at and now he had to get poked with a needle for blood and get a chest x-ray. Then he was to go see our pediatrician the next morning for a TB test and then the retinal specialist wanted to see him everyday that week. I think we spent about 25-30 hours in hospitals and Doctor's offices that week.
We took a long weekend of camping and relaxation. (we had to get permission and promise that we would be back first thing on Tuesday morning. When we got back from our trip there was a message on the answering machine from Dr. Kim (the retinal specialist) that he put Keith on the OR schedule for that coming Thursday to go under anesthesia for a more thorough exam. We were crazy nervous and so when we went in to the appointment on Tuesday we had a zillion questions. He told us that the labs all came back normal and that there was no infection so it was not cat scratch. He said that he had it narrowed down to two genetic diseases/disorders. Von Hipple Lindeau or Coats Disease. Both which were very serious and had to be acted on right away. On Thursday Dr. Kim came out of the OR and told us he was pretty sure that it was Coats disease, but that he would like to send us down to Boston for a second opinion and probably surgery. We went down to Boston the following Tuesday to meet Dr. Jay Duker at New England Eye Center of Tufts Hospital. We did our research on this Dr. and found that he had a great background and was very respected in the ophthalmology field. So we scheduled his surgery for the following Monday morning August 2nd 2009.
We decided to head down a few days early and see the sights of Boston and let Keith have his favorite dinner (lobster!) We had a very special babysitter come with us so that we could have all the kids with us and be able to concentrate on Keith when it came time for surgery day.
The giant teddy bear outside of the Tuffs Floating Children's Hospital
I have never been so scared for my child. We brought the computer with us as this is the one thing that can distract Keith from almost everything! We talked to the anesthesiologist about what had worked in the past for Keith and his procedures. I had spoken with the past anesthesiologist about the fact that it was such a battle to get the "sleepy juice" into Keith. She suggested that we use a nose drop that would make him more relaxed and there would only be a few drops. Unfortunately the anesthesiologist did not have that available. Dr. Duker's fellow resident came in to our room to give Keith the dilating drops (3 in each eye) I tried to tell him that it would be better to wait until Keith was under to give them as he puts up an incredible fight even with 2 adults trying to pin him down. He said that he has handled kids before and was sure he could get them in. After 5 minutes of wrestling and a kick to the chest the fellow says "I think we should wait until he is under to do these" I said " That's a fantastic idea Dr." with (as you can imagine) a big smile on my face. Sometimes parents really know what is best with their kids! After a few more minutes I got dressed up in my OR outfit (very flattering) and went to the OR with Keith. Very scary for me and for him. I was able to lay in the bed with Keith in my arm. We held up the mask to his face and encouraged him to talk and breath deeply. Not even 1 minute and he was snoring. I cried as I kissed him and said goodbye....I was hoping and praying and facebooking while they were working on his eye. I had many more questions to ask the doc but when he came out and said that Keith was heading to recovery I just wanted him to be quiet so that I could go see my baby. He did tell us that it was definitely Coats and that he was able to do 148 blasts of laser and 9 blasts of cryo.
My boy was so upset waking up he complained so much about his eye hurting. They gave him 2 injections of pain meds into his iv and he was back asleep again. It seemed to take forever for him to wake up. We were there from 7am to 1pm. Luckily our hotel was right across the street from the hospital and we were able to carry him over and be in the dark in about 10 minutes.
He slept for the rest of the day and only had a few bites of dinner and back to sleep. The next day he looked like he lost a fight at school. His eye was swollen shut and he could not open it. Dr.. Duker did a post op visit and said that he was doing as expected and that we could go home, 4 hour trip north. Very sleepy boy (very unlike him).
By the 3rd day he could open his eye and that is when he scared the crap out of me. The doctor had not told me that it was normal for the white of the eye to turn blood red so I freaked and took his temp. He was at 100.5degrees F! So I panicked and called the eye doc, they told me they thought it was ok but I should take him to the pediatrician. I took him to the on call Doc and she had never heard of coats. She was also very freaked by Keith's blood eye and told me to head straight to the retinal specialist and to call him from the road. I had Fred (my husband) call while I was driving and Dr. Kim said that it was normal for the eye to be red like that and that he may even have bloody tears. Talk about relief and frustration all at once!!! Next time I told the doctor to tell me in advance about all the things that could be normal so that I would be better prepared. After about the 5th day Keith's eye looked normal again. He still has about only 20/200 in that eye. We are due to go back to Dr. Kim for a check up to see how things are healing at the end of August. We also have a surgery date in Boston for November 2nd. I have spent alot of time reading and researching everything that I can get my hands and eyes on. I have found there is a drug (Lucentis) that has been used to treat some other eye conditions as well as Coats. I will be asking Dr. Kim about it at our check up. Until then more research. I hope that anyone who is going through this finds this blog helpful. I would love to hear from you if you are in the same situation as it would be great to swap information.
