Sunday, September 29, 2013


We had a very successful trip to Duke.  To say Matt and I were a little concerned about the car ride would be an understatement.  After all, he screams on the way home from day care most of the times I bring him home.  We had an appointment at 1:00 with Duke Audiology (he also needed his hearing tested while he was sedated) and we wanted to have plenty of time to get there since Connor's longest trip to date has been to West Ashley!  We left at about 6:20 a.m. and were cruising along until we got stopped by an accident. We weren't far behind it, so we couldn't get off on the detour they had evidently set up. Of course Connor had been sleeping soundly until we came to a stop.  We ended up having to change and feed him while parked on the interstate.  We ended up calling Highway Patrol because we had to get up to Duke and were curious what the deal was.  They told us a lane had just been opened and we should be moving soon.  Luckily we got moving and we were off.  Connor did great and we didn't have to stop again until the North Carolina Welcome Center.

Connor's first out of state trip

Connor enjoyed walking around a little bit and eating outside in the shade.  We had to stop a little closer to Durham for gas, and luckily Connor was able to hold off on eating until we got to Durham.  It took us a little while to find the Children's Hospital, but we got to our appointment about 5-10 minutes late.  Not bad for a drive from Charleston and getting lost parking and getting to the appointment.  They thought they could test Connor's ears there, but we of course knew better.  We decided we would go ahead with the hearing test while he was sedated.  Then we scooted off to our appointment with ophthalmologist, Dr. Freedman.  She looked at Connor for a while and said she highly doubted we should do a cornea transplant.  It would require multiple surgeries and multiple sedations so we were kind of relieved about it.  She said it was very likely she would proceed with the optical iridectomy after she looks at the eyes while he is sedated.  She confirmed what we already knew which is that he's not tracking with his good eye and there is likely some underlying neurological/cognitive things going on.  She said by 7 months, most babies with a bad eye would have essentially already trained their brains not to use the bad eye.  She said in a way his developmental delay might be helpful because if he's not tracking or seeing yet, his brain hasn't learned to rely only on one eye.  One of our questions was at what point do we stop saying his lack of vision (in his right eye primarily) is due to a developmental delay and start assuming he won't see.  She said vision develops up to a year and for him it could be even longer so we still have some time.  He is very sensitive to light, but primarily in his right eye.  So we will see.  Here is our sweet bug sleeping before he got messed with!

After our appointment with her, we went upstairs to sign the paperwork for the anesthesia.  It's a little scary to sign a paper that says a risk is loss of life.  After we left here, we went to the hotel.  Matt was on Connor duty and I unloaded the car.  There was a restaurant at our hotel, but we weren't sure when it opened so I set off to find dinner.  Luckily I found an Arby's close by and didn't have to stray too far from the hotel.  When I came back, I saw this sweet sight:

We rested up for our big day and were up Friday morning around 2:30am.  We had to make sure Connor got as much Pedialyte in before 4 as possible.  We loaded the car back up since we couldn't stay there again and were the first people at the eye center at about 5:40.  Connor was starving and it sucked because we found out they wouldn't take him to sedate him until about 7:30.  We realized we should've woken him up around 11 the night before and given him some more formula, but live and learn.  He eventually took a nap and then after they gave him the dilating drops he screamed until they took him back.  It ended up being about 10 extra minutes because there was some confusion about audiology.  Luckily it got sorted out.  They didn't let us go back when the put him under so it was hard to hand him over.  I of course cried because I just wanted everything to be done with.  We went out to the waiting room and sat alone in our own little antisocial area where we could see the update board.  Even though we weren't hungry at first, I ended up going to get breakfast for us after about an hour and a half.  We realized we wouldn't be any good to Connor if we didn't eat and take care of ourselves.  

Shortly after, Dr. Freedman came and talked to us.  She said the right eye was a little more abnormal than they originally thought.  However, he should be able to see to walk around and see and track lights (assuming the neurological aspect was there).  She did proceed with the optical iridectomy.  Basically, she removed part of the iris (where the cornea is clear) from his left eye and expanded his pupil to allow light to get through.  Again though, all of this hinges on the neurological aspect which is a pretty big one considering all of his issues.  Connor is also at risk for glaucoma in both eyes.  We were allowed back one at a time, so I let Matt go back first.  I thought I'd be too emotional coming and sitting back in the waiting room after seeing him.  Eventually I got called back and Connor and Matt came to me within a few minutes.  It was SO great to see him.  He was asleep, but Matt said he was fussing earlier.

Connor spent most of the afternoon sleeping.  We knew from his previous sedation that he would likely be really gassy so when he was very fussy, we figured he needed to burp.  He ate some pedialyte, but was just in the mood to sleep.  It was up to the anesthesiologist if we would be able to leave and stay at a hotel or stay in the hospital for observation.  Because of all of Connor's issues, he wanted Connor to stay at the hospital to have his vitals monitored.  So, we had to wait for a room.  We waited from 10am to 4:40pm!  We had our only little bay area that we stayed, but we were definitely getting antsy for a room.  We finally were wheeled over and literally as we're about to walk out the door the nurse says she forgot to transfer us out, or something of that nature.  I just had to laugh.  We could literally see the exit door and we were still stuck back at the eye center.  Matt gave me a funny look that made me laugh even harder.  We really tried to keep our spirits up this trip and make the best of everything.  

We were a little nervous because Dr. Freedman had told us that if the hospital could discharge us before our 8:00 appointment with her the next morning, we could just come back to the eye center to see her.  Our nurse after surgery said they usually don't discharge until around 11.  We were really hoping to get outta there ASAP, especially since we had a good drive ahead of us.  Luckily, when we got to our room, Connor's plan was to monitor overnight, feel better, and check out before his 8:00 appointment.  We confirmed this with both the day and night nurse and were glad when they said they were getting us outta there first thing.  

Thank goodness we got that breakfast because we never ate anything for lunch.  As soon as we got settled into the room, I grabbed us some dinner from the cafeteria.  After we ate, I went to the car to get our suitcases and some other things we needed.  Matt couldn't go because if you know Matt well, you know that directions are not his forte.  Poor guy would've ended up roaming the streets of Durham!  Once we got Connor to sleep for the night, we passed out too.

This was the first time we put him down...only lasted about 15 minutes.  We ended up having to put him on his belly.  He's a belly sleeper naturally and I was hesitant because of the board on his arm, but as soon as we rolled him over, he was out.

Poor Matt had to sleep on the floor!  What a good dad!

We were exhausted and even though I should've passed right out, I couldn't sleep.  It was so loud out in the hall and our room was right across from the ice machine.  Connor woke up around 12:30 and at that point I moved my chair out so it could recline.  I was able to sleep a little bit until 4:40ish.  When Connor woke up in the middle of the night and Matt was putting him back in his crib, his probe fell off.  Our nurse ended up keeping it off because Connor's stats looked so great!

We got ready and I made a lovely trip to the car in which I dropped Connor's pack and play mattress about 3 times and our snack back about the same.  Thank goodness no one was out and about that early in the morning because it was a little embarrassing!  As it neared 7:00, we were both a little nervous because we knew shift change was coming up and we were worried if we didn't get out soon we likely wouldn't get discharged before our appointment.  Luckily, the resident came in, looked him over, and gave us the green light to get outta there.  We left around 7:15, got breakfast to go, and then got to the eye center nice and early.  We were the first ones there and they took us back almost immediately.  

They checked Connor's eye and it wasn't as red as I was envisioning it.  They did a few tests and I think they were hoping for some more immediate results, but that didn't really happen.  Connor's left eye seemed about the same in regards to reaction to light.  We got about 4 different kinds of eye drops to give Connor and a lengthy eye drop schedule.  In addition to the eye drops, we will go to a follow up appointment with our ophthalmologist here on Friday, then another follow up appointment two weeks after that, and hopefully not, but possibly an exam under anesthesia just to make sure all is well.  He will also wear his protective eye patch for a week and we'll give him sponge baths just to make sure nothing gets in his eye.

After that, we were off!  Connor fell asleep almost immediately in the car and woke up when were over an hour away from the border.  I hoped he could hold off until we got there and he did!  It was a little chilly and even though he was in pants, we didn't have a jacket for him, so we didn't move around as much at this rest area as the other one.

Happy baby on the car ride!

Here we are sitting in the car back in S.C.!

Connor did great in the car (again)!  We were so proud of him.  We stopped for gas near Lake Marion and tried to feed Connor since he hadn't had a big meal since Duke, but he wasn't interested so we kept on moving.  We made great time and spent the rest of the day eating, watching college football and just relaxing.

Connor ended up passing out during tummy time...he was wiped!

Overall, it was a tough trip, but we tried to make the best of it.  Connor did really can't keep him down!  Multiple people commented on how fiesty and strong he is.  His recovery nurse was telling another nurse that he did better than she expected.  We are just so proud of him!

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