I.C.U. ( as in "I see you") :)

So, yesterday was the day we had been waiting for (with a combination of hope and dread) since January.


Amy and I actually left Thursday night. Our appt was 730 on Friday, and I just had no desire to fight Memphis traffic, (plus I had a free night from hotels.com) so we went down early. I found a hotel about two minutes from the hotel. We found out on Wednesday that we could have stayed at the FedEx house, but we already had reservations, so we just went ahead. From the pics I saw of the FedEx house, I might have never been able to get Amy to leave, so it was probably a good thing.

The hotel we stay at was probably the smallest hotel I have even stayed in…maybe 30 rooms? It was very trendy. My only problem was no vending machines. No quite so cool when you want to give your kid midnight snack because you know they won’t be able to eat breakfast the next morning, but we survived.

Neither of us slept very well. I just got a king bed because I knew Amy would sleep with me. She told me, “ You are on the Mama side and I am on the Daddy side. I will be Daddy.” Then she rolled over and pretended to snore like a buzz saw. HAHAHAHA! She also woke me up at three am by barking in my ear. Ah, adventures….

Friday morning, we got up and got ready and headed to LeBohnner. I could see it just fine, but had a difficult time finding parking. Then, we had to navigate the hospital maze to find the waiting room. When we finally made it, we were only about 15 minutes early instead of the 30 I had thought. It was fine, though. We waited out there until about 8, and then they took us back to pre-op. On the way, we stopped in Bunny Lane for Amy to pick out a toy to be hers and she chose a puppy that rolls on the ground and giggles. Everyone there was WONDERFUL. So nice and patient. However, no amount of wonderful could make up for the HELL of putting drops in Amy’s eyes. We finally ended up with me lying on her and two nurses putting them in. Three times. For a total of seven drops in each eye. :( After that she was pretty gun shy, and even testing her pulse was met with resistance, but we made it. She finally calmed down, and then a patient life specialist (Lauren) came to see us. She was SO SWEET. She talked to Amy about the anesthesia (but never called it that) and how they would do it, and that she could have popsicles after she opened her eyes. Amy really liked her, and so did I. She brought Amy some pictures to color. Amy was pretty much exhausted at this point (about 915). I tried to get her to just go to sleep, but of course she would have nothing to do with that. Lauren came and took us to the playroom about 930, and we waited there until 10 when they came to get her for the procedure. (Only 15 minutes late, I think that’s pretty good.)

Amy took this picture. :)

Waiting Room

All ready!

In the playroom

I got to walk with her for a bit, and then she went with the nurses and I went back to the waiting room. She was bouncing and happy as she walked with them, so I felt very good about it.


I went down and got a snack, and made a few phone calls. I sat in the waiting room and read for a while. There was a lady on a couch beside me. She had her shoes off and her nasty crusty feet sticking out from under a blanket and her head covered up. She was snoring so loud that she eventually woke herself up. When she finally roused up, her mom yells across the room, “They done took her (sleeping nasty foot woman’s baby) back there.” SNFW went back to sleep. OH. MY. Is all I have to say about that.

Around 1130, they took me to a little room to talk to the dr. It was Dr I. We talked for quite a while. He said that he still thinks she has Malattia Levantinse (Doyne’s honeycomb macular dystrophy), but we will not be 100% until the blood work comes back (they drew blood while she was sleeping, thank goodness). If it is NOT this, they will test for other genetic disorders. At any rate, these tests will serve as a baseline for her in the future. If it IS this, she will be the youngest recorded case in the world. Yeah. :( Still no for sure treatment plan; and treatment may not even be needed. They will both be examined again in six months, and tests repeated in two years. If there is no change, we will maintain. If there is a change, we will go from there. Yeah, I know frustrates me, too, but I TRULY trust Dr. I and what he is telling us. There is not a “quick fix” for this. You cannot take a pill for it, nor have surgery to fix it. We are at a definite disadvantage in that we have no access to Jason’s paternal relatives, as they are all deceased, and the tests that Jason had as a child were not sophisticated enough to see this. The fact that Dr I keeps saying over and over “I can’t believe they can see as well as they can,” both comforts and concerns me. The ONLY immediate vision problem that Amy had is her night vision is slightly impaired. Well, you know what, so is mine, so that may not even be related to this.

After our meeting, he told me Amy still had a while longer. I went back out to the waiting room. He came back out again a bit later. He had mentioned donating some of Amy’s blood sample to a DNA bank, and needed to get my consent for that. Basically, I said that they can do whatever they want with the blood sample (already drawn) and compare that to her test results in any way they want, and it will be in no way associated with Amy, unless they find something that could help her. Of course, I did it. If it does not help her, hopefully it will help some other little child.

Finally, about 1200, they came and got me. Amy was out. She was very distressed when I got back to recovery, thrashing and talking out of her head. The nurse repeatedly assured me that it was TOTALLY normal. She finally did calm down and fell into a good sleep. We ended up having to wake her up with promises of popsicles. :) They took out her IV (such a tiny little straw like thing! Nothing like a grown up IV. It didn’t even hurt her when they took it out) She went potty, and ate her popsicle, and we got her dressed. I went and got the car, and the nurse brought her down in the trademark red wagon. We loaded her up, and we were on our way!

She did fine the rest of the way (and we had to stop for beans at Taco Bell on the way home). She was distressed last night b/c she had the little heart monitor things on her and we had to soak in the tub to get them off. By bed time, she was VERY tired. She slept well, and seems to be totally back to normal this morning.

So, the answer we got is that we still don’t have an answer. We are a step closer, but not there yet. As we were driving down there, I was really thinking about all we have to thankful for. I have a friend with a daughter Amy’s age who has already survived leukemia. Another friend who just donated part of her liver to save her infant son’s life. We have to take fish oil tablets at dinner. Amy has sight, and is in no immediate danger of losing it. In fact, her vision is better than mine. God placed us where we are for a reason, and we will ALL be fine. If a cure is needed, there WILL be one, in time. Until then, we will keep our faith in the Giver of Sight, the Giver of LIFE.