Braden's Eye

Last summer Braden's eye would get red after being in the pool....which I assumed was from the chlorine so we really didn't pay it much attention. The redness would go away after being out of the pool for a while so of course I thought it was normal.

Once, for two days in October his eye was red randomly then went away. I wasn't sure why but it went away so quickly that I forgot about calling the eye doctor. This story sounds A LOT like the Cailey Pfapa story...something that comes for a couple days and then disappears right before I'd call the doctor and the timing is also very similar.

We went to Disney in November and he got pink eye while we were at Epcot and a day of Magic Kingdom. Luckily I had drops since I seem to get it ALL the time and it cleared right up. I know pink eye well enough to know that's what it was then.

December got crazy busy like it always does but Braden's eye KEPT getting red for a couple days then clearing up. It was always the same eye and I knew I needed to call the eye doctor but they didn't have any appointments until January because of Christmas.

So started the months long saga trying to figure out what was wrong with his eye. When we showed up for the first time the doctor was VERY alarmed and wanted to know what had happened to his eye. Umm...we had no idea and told him about the reoccurring two day lasting redness and he was appalled that we didn't bring him sooner. Note to self...anytime anything is red, even for two days, DO SOMETHING about it! It's not like it happened all the time...and it seemed random when it happened so honestly we had no clue it was bad. He and our pediatrician ran all sorts of crazy tests on Braden (ones that we knew would be negative from testing he had done as a baby). We went back almost once (or more often) a week from March-June. Brian would take him early in the morning before work to have the progress from antibiotic and gel drops checked. His vision in that eye went WAY downhill and he had to get a new prescription for his glasses that weren't that old. He NEVER complained that he couldn't see and never said a word about pain.

It never cleared completely up (though the drops seemed to make it a little better) but in June the doctor said to come back in October for the next check.

Over the summer I noticed it was red after swimming (again...ASSUMING it was from the Chlorine and not putting two and two together). Lately we haven't spent much time in the pool because of Cailey's recovery so it hadn't been red until her birthday party (a week before we were leaving for the beach). I meant to make an appointment for the week but it got lost in packing, taking care of sick children, school, and everything else. It's not like it was always red...and he NEVER complained. (Reflecting on all of this now I DO realize I was a dummy who had no clue).

This week we're at the beach. Ephram has a broken leg and can't get in the water. Kinsey has an appointment with an oral surgeon next week to be seen about cutting her lingual frenulum, and Cailey is having a lot of the problem's with pfapa that she had before her surgery. On Monday I noticed eye was red and said to Brian on a run, "why do I have the feeling that Braden is going to have something really bad happen now?" To which Brian agreed with since that's the way things seem to be going lately.

Tuesday night Braden's eye was bad. And I mean TERRIBLE. My stomach was in knots just looking at it because not only was it blood red as soon as he got out of the water but you could no longer see his black pupil. It was gray....almost like he was blind. I asked him to read a sign with large letters and he couldn't even make out one (while he could read it just fine with his other eye). We needed to do something quick.

Wednesday morning after my run I called Kelly to chat and asked her to pray for Braden's eye. I told her all the details and Brandon was there so she told him. (This I believe was TOTALLY from God...that Brandon was home, that Kelly answered the phone that early, and that he wasn't out of town). Since he's knows so much about the eye he said we needed to take Braden to a dr. immediately and not wait until we got home because the damage could be irreversible. I was terrified. We didn't know if it was cataracts or if he would be able to see out of that eye again or what?! Brian got right on the phone with eye doctors to BEG them to see Braden that day. Thankfully one did but we had to wait and watch his eye ALL day until 3:30.

We all headed to the doctor before Cailey's birthday dinner and my stomach was a MESS. I haven't been this scared since Kinsey had the mole on her knee (except when I thought Cailey had a brain tumor from her bad headaches...which turned out to be from the PFAPA). Brian went in with him while I watched the other kids. I was on pins and needles the entire time until they came out. It took an hour.

I found out the doctor said that Braden's eye is in very bad shape and confirmed that his vision has gotten even worse since June. Apparently the chlorine and salt water were NOT helping and in fact made it get so bad. It explains a lot about why he would have a red eye after swimming though..and I was suddenly thankful that we hadn't been to the pool in a month because of Caliey's recovery! He was told that he couldn't go in the water...to which he wasn't happy about but it just showed on his face...he didn't utter a word. We also found out that his eye had been HURTING him! Braden has such a high pain tolerance and doesn't really complain about things so we had no idea that he was hurting. He didn't even realize his vision had gotten worse which is very common for kids. The doctor thought the 'film' that was on his eye was from the chlorine maybe?? We still don't know for sure what is causing this very tough infection. Maybe it's fungal? Maybe it's something worse?

this isn't the worst it's looked as the white can get completely blood red
while the pupil is gray but i never thought to take pictures until yesterday.

But the antibiotic that the Raleigh Dr. was treating him with wasn't helping and I am VERY angry that he wasn't more aggressive with it knowing what I know now. We feel like he just didn't know what else to do so instead of referring us elsewhere or trying something different he was just 'taking a break' until October. Unfortunately we didn't know better of we would have been more proactive! We had NO idea it had started hurting (which Braden said has just happened recently) and the film didn't appear until Tuesday.

The beach ophthalmologist told us that we needed to find a cornea specialist, gave us drops to put in Braden's eye every hour, then a cream to put in at night. He also wanted to see Braden the next day (Thursday) at 11:30.

So we went back and the doctor said his eye improved a little but we had a LONG way to go and had the other dr. in the practice come in and look at it too. They did every test possible and thoroughly examined it while my sweet Braden boy said nothing. They both agreed it was very bad...but don't think it's irreversible if we have aggressive and diligent dr's working with it. They immediately set up an appointment for Monday morning with Duke's pediatric cornea specialist. Talk about AWESOME!! This is what the Raleigh ophthalmologist should have done MONTHS ago. His eye is in bad shape. We aren't sure of the outcome...and honestly I'm scared. My stomach is in knots and I'm back to having the same problem's with it that I had in the spring. I know worrying can't do anything to fix it but this mama's heart is terrified for him.

Two people called today from Duke to set up appointments and they are on the ball. Our week next week (and our official FULL week of school) is going to be filled with lots of appointments. I'm pretty sure there will be nothing normal about next week. We started 'schooling light' last week which means English, Math, and Reading but it's time to start it all. Monday Braden will go to work with Brian so he can take him to Duke so I'll do some school Sunday so Cailey and Braden can do it together..then they'll finish their independent work during the day on Monday.

Monday- Braden's eye appointment with a cornea specialist at Duke Hospital
Tuesday- Cailey's follow up for her tonsillectomy (ENT)
Wednesday- Kinsey's appointment with the Oral Surgeon to schedule the work on her lingual frenulum
Thursday- Ephram's appointment with the Orthopedic for more xrays to see how his break is healing

Praising God for putting people in our lives to pray. I have to believe that all my babies can be healed. Please pray for peace and not worry. Pray for Braden to regain his sight and for the cornea specialist to be able to figure out what is wrong with his eye. Pray that Cailey will be HEALED and get her appetite back. Pray for Ephram's leg to be healed QUICKLY and CORRECTLY. Pray for sweet Kinsey's procedure as we have no idea what to expect. Any words of encouragement this week would be awesome.

We are still having fun...we WILL have fun:). Yes, I have TWO children who can't get in the water. at the beach. I will always try and make everything fun for the kids. It's rained everyday since we've been here but you won't find me posting or complaining about that because we can be together...and be happy. Thankfully we've still gotten beach time in everyday in between storms. We have gone to the doctor twice since we've been here yet I won't put it anywhere but in this post because I don't want that to dampen our vacation..I want the kids to focus on being together...not about worrying. Are we worried? YES! But we can still focus on the positive. I am TORN UP inside but share that with Brian...and not the kids. Things haven't gone "our way" this week but I guess that's reality. I just want my little boy to see clearly again and be healed.

Please pray.