Saturday, May 10, 2014

His eyes while sleeping

I haven't updated in a while. Danny is now almost 6. We were original told he'd have his next surgery before kindergarten but the last time we went to the ophthalmologist he said it wasn't affecting his vision yet so we decided to wait.

I didn't realize it had been so long since I've updated! We moved to Arizona a couple years ago and part of the reason we put off the surgery is because I don't know about a surgeon here and I really liked the results with our surgeon in Utah and I trust him. I'm considering traveling back there for the surgery but haven't decided yet.

I get a lot of questions about his eye when he sleeps so here is a picture. He's never had any dry eye or vision issues.

Tuesday, October 18, 2011

One Year Post-Op (2nd Time Around)

Thought it was about time to post more pictures. Danny is now 3 years old. It has been a year since his second surgery and things are looking great. He still has no vision problems. We had a check-up with the surgeon last month. He said things are working good and that we should come back in another year.

Most of the time, his eyelid looks fine. When he is looking straight ahead, the only noticeable difference is the crease in his eyelid (which is missing on his ptosis eye). When he looks up, the non-ptosis eye is open wider. When he looks down the ptosis eye is open wider.

Danny's favorite silly face to make is one where he closes his ptosis eye and screws up his face, so in most of my pictures is eyelid looks extreme, but it's not. I asked him if his eye ever bothers him and his looked at me really confused and shook his head no. Sometimes I get people asking me about it. Most of the time they assume he just bonked it or something. If kids ask me about it, I tell them that he was born with it almost all the way closed and had to have surgery to get it open, so now it looks a little different. At home we don't make it a big deal. We joke about his silly eyelid sometimes. Today we were looking at newborn pictures and Danny said, "It's Pirate Dan!" Hopefully he will be able to continue that carefree attitude about himself.

So for these pictures I took 2 from the same day and tried to put them side by side so you can see how different his eye can look on the same day.

Monday, July 25, 2011

Sleeping Eyes

I get a lot of questions about how much Danny's eye is open when he is asleep and how often I put in ointment. First off, I only put the "Refresh PM" in his eyes for a week or 2 after surgery. He is now one year out from his second surgery. Second, he amount his eye is open varies but usually is is probably more than halfway closed. In the car (or if he is asleep sitting up for some other reason) his eye is open pretty wide. In the car the other day he fell asleep so I decided to snap a quick picture to show you all:

Don't freak out if you haven't had the surgery done yet. This is really extreme and it usually isn't open this wide, but sometimes it is. And I don't use ointment and he has never had any dry eye problems. It's not something that ever bothers him. Here is the awake picture just after so you can see how normal (although spacey) his eyes can look when awake even if they look like this when asleep:

Friday, December 3, 2010

Post-Op Appointment

There is really not much to report here. The surgeon looked at him for a few seconds and said he looks good. He said one of the ways you can tell the surgery worked in that when they look down the sling will pull that eye open more. He also said at this point it is not necessary to continue with the ointment (which I haven't been doing anyway). But the surgeon says that even though his eyelid is slightly open when he sleeps, it is shut enough to protect the eye and keep it moist.

Danny doesn't complain about his eye at all. He can shut it just fine. He does have some scars because he wouldn't stop picking at his scabs, but they are very small. They eyelids look pretty even most of the time. But he does have some faces where you can really see a difference. This is a picture of him doing a downward gaze, which is when the difference is most noticeable.

Saturday, October 23, 2010

Recovery Progession Pictures

Here is a day-by-day progression of Danny's recovery. He is making silly faces in a lot of the pictures because it is hard to take pictures of a busy two-year-old boy.

Sept 29th-Before Surgery

Sept 29th-After Surgery

Sept 30th

Oct 1st

This one is Oct 2nd while his was asleep. I'd tried to do other sleeping ones but he usually gets mad and squeezes his eye shut. It acually is a little more closed than this now.

Oct 2nd

Oct 3rd

Oct 4th

Oct 5th

Oct 6th

also Oct 6th. You can see how the face he is making or the position he is in makes a difference to how his eye looks.

Oct 10th

Most of the time his eyes look pretty even. When he is looking certain directions or making certain faces it is more obvious that they are not exactly the same. We have the post-op appointment with the surgeon just before Thanksgiving. I'll update again after that.

Thursday, September 30, 2010

Recovery...First Days

So first let me answer the questions that I get asked most often.

Danny CAN and does close his eye. I was watching him while I was reading to him tonight and when he blinks, his right eye, the ptosis eye, only flinches. It doesn't blink along with the other one. But when he went to close his eyes to sleep, he shut it just fine. It looks like he raises the bottom lid up to close the gap.

As far as symmetry goes, it is too early to tell how even they are because of swelling. I'll keep you updated.

Danny slept from about 11am on the car ride home from the hospital until 3pm when I went to give him Tylenol with Codeine. He slept well except for a couple times where he would whine for a few seconds. He didn't really want to wake up at first, but when he did he was happy. The swelling had increased a lot. This picture is from just after he woke up:At 3:30pm I gave him Amoxicillin and ointment on his stitches. He ate a slice of bread and relaxed and watched TV for an hour. Then he decided it was time to play. He gave me his pacifier and sippy cup, then started acting like a normal two year old. Around 6pm he had mac & cheese for dinner, had some Motrin after complaining about his eye a little, then relaxed in front of the TV. He was really tired. Just before 7pm I put him to bed. He felt a little warm and may have had a slight fever. A little after 7pm, he came wandering out of his room. I was able to give him the Amoxicillin and ointment that I had forgotten earlier. But then he decided he wanted to sit with me at watch Mickey Mouse Club house for a couple hours. At 9pm I have him Tylenol with Codeine and put him to bed. When he went to bed the surgical tape was off of one of his incision. This picture was him just before he want to bed (wearing Dad's socks):

Danny woke up around 7am. He woke up happy had feeling fine. I gave him Amoxicillin but no pain killers. He looked a little less swollen and all the surgical tape was gone from his incisions. This picture was taken just after he woke up so his eyes look a little sleepy still:

This picture was around 9am:

At 10am we went to Chick-Fil-A with a friend. Danny acted just like himself, playing on the climbing toys and sliding down the slides. Right before we left, around 11:30a, he complained about his eye hurting so I gave him Motrin. But I think what may have happen is that he wiped a sanitizing wipe over the incisions and the alcohol stung the wounds.

When we got home he had more Amoxicillin and tomato soup for lunch. So after lunch, since he was covered in soup, a little dirty from playing, and still a little gross still from the surgery, I decided it was time for a bath. I was a little nervous, but it was no big deals. We washed like normal and, since he refuses to tilt his head back when I rinse his hair, he had water running down his face. He was able to squeeze his eye shut just fine and I lightly blotted the surgical area dry. These pictures were just after his bath:

We went for a walk around 6pm, and he was still doing great. The swelling had gone down a lot, but it is obviously still swollen on his eyelid. I think that is taking longer because they took out the fatty tissue and made a longer incision there.

He went to bed following his normal routine, except with Amoxicillin and ointment. This surgery has not affected his personality at all and I don't think his eye is even really bothering him.

Wednesday, September 29, 2010

2nd Surgery-Frontalis Sling replacement

At 2 years & 2 months old, just about 2 years after his first, Danny had another Frontalis Sling surgery. As mentioned in previous posts, his eyelid had progressively become droopier over these two years so they decided it was time to either shorten or replace the sling. I'll try to be as detailed as possible and take you through our day.

The day surgery, from 12am-4:30am Danny was supposed to drink only clear juice, water, Sprite. Then after 4:30am he was not supposed to eat or drink anything. We woke him up to leave for the hospital at 5am. He was happy, although he did want a sippy with milk. Besides that he did not ask for any food and was pretty good with the whole situation.

Surgery time was 7am, so we had to check-in at "Same-Day Surgery" at 6am. Danny had fun playing with all the toys. When the nurse called us back to get his measurements and check his vitals, Danny got a little nervous. He sat on my lap clutching his backpack while the nurse took his temperature, took his blood pressure, etc. We changed Danny into hospital clothes and the nurse took us to the O.R. waiting room.

Danny again started having fun and playing with the toys. The education nurse brought by a very non-descript doll wearing a hospital gown for him to color and play with. That was really nice because he had something to take with him back to the operating room.

The surgeon, Dr. Patel, came and talked to us and Danny for a minute and marked Danny's eye. He lifted the lid a little and looked at it. He told us that when kids are older they can adjust it better because the kids can tell them what feels right, but when they are littler they kind of have to guess. He was followed by the attending nurse, who just had us sign some paper work, and the anesthesiologist. The anesthesiologist told us the it was pretty safe, safer than driving in a car. He said they would give him gas (he chose cotton candy scent) and get him to sleep before they gave him an IV or anything. That was nice knowing he wouldn't be freaking out about getting a shot without me there. When he was done talking to us, he walked us back towards the OR, with me carrying Danny. He took Danny and his doll, then they waved goodbye and walked out of the hall at 7:30am. We went to the waiting room. Dr. Patel came into the waiting room around 8:30am. He said everything went fine. He drew a diagram of what they did, showing two incisions with dissolving stitches just above his eyebrow, another one on his forehead, between the other two, two on his eyelid, then a longer one across his eyelid. He explained that when they went in there was a lot of fatty tissue that was preventing him from opening his eye as well as he would otherwise be able to. He explained that this was because his muscles don't work the same as ours. So they decided to trim some of that fat, which is why he had the extra incision along his eyelid. Dr. Patel explained that this will make the sling last longer. He said that he has some patients who he has done this to 8 years ago that have not needed the sling replaced yet. In the diagram he also showed us how the sling was positioned across the eyelid, up on each side to the two incisions, then together at the top incision. He explained that when Danny raises his eyebrow muscles it will pull the eyebrow up and the eyebrow would pull open the eyelid. We were instructed to put an antibiotic ointment on the incision 2-3 times a day for a few days just to keep them moist. We are also supposed to put Refresh PM ointment in his eye every time he naps or sleeps until we go to the post-op appointment 8 weeks from now. According to Dr. Patel, his eye will be open about twice as much as it was before when he is sleeping. But he also said that kids adjust to his very easily, and judging from last time, that is true. Dr. Patel also said that Danny would be trying to rub his eye because it would feel weird and numb and that was fine. It wouldn't matter if the tape came off and as long as he didn't bump his head hard enough for the stitches to split open he should be fine. He left us with a warning that it would get worse before it got better.

After talking to the surgeon we waited for the nurses to call us back to recovery. Around 9am they let me (only one parent) into recovery. The nurse was holding a sippy of apple juice for Danny to drink out of. I don't think he actually drank any, though. The nurse said he had been calling for me. He was mad about the IV in his ankle and the oxygen monitor taped to his toe. The first thing he said to me was "Foot," holding it up, "Off." The nurse had wrapped stuff around it but I think that made it bug him more. The nurse told me she had put arm restraints on him because he kept rubbing his eyes. I didn't bother to tell her the doctor said it was probably fine. I held Danny and took off his arm restraints (with the nurses permission). He was very tired and grumpy. He REALLY wanted to rub his eye. I didn't let him very much though because I didn't want it to get infected or anything. His eyelid looked a little bloody and swollen. His tears were a little bloody, too. It was pretty sad. We waited until the nurse got a call from "Post-Op" that they were ready for us, then took us over to a different bed where my husband met us. (I have no pictures from recovery since I was trying to soothe Danny. Sorry!)

In Post-Op the nurse decided to take out the IV so Danny would relax. He kept throwing a fit and his oxygen levels would go down. She did warn us, though, that if Danny did not drink some clear liquids they may have to put it back in. In Post-Op they just want to make sure he is stable, that his oxygen levels stay above 90 for 20 minutes, and he keeps some liquid down. Danny was very grumpy and defiant. He did NOT want to drink his apple juice. And he really still wanted the oxygen monitor off his toe. He was snuggled against me and drifting in and out of sleep while we were in post-op. Every couple minutes he would cry again or rub his eye. I told him not to rub very much so he would kind of just touch it then put his hand back down. Anytime I asked him to drink his juice he would get upset. The nurse brought him a popsicle and a slushy but he wouldn't drink those either. The nurse gave us discharge instructions. The main thing was to make sure he was breathing normally, including checking on him through the night. She also told us signs of infection which were pretty much just goopy discharge. A slight fever is normal after surgery so she said not to worry about that in the first 24 hours. We got a prescription for Tylenol with Codeine. The nurse told us the best pain management would be to alternate Tylenol and Motrin every 3 hours. Danny was also prescribed an antibiotic just to make sure that there was no infection from the surgery. Around 10am the nurse called the anesthesiologist and told him that Danny's IV was out, he would not take liquid, but that she thought he would be fine as soon as he left. Luckily the anesthesiologist thought Danny would be fine too and didn't make us put in another IV. Actually, as soon as the nurse was off the phone Danny decided to drink his whole sippy of apple juice. The nurse came in and told us we could get him dressed and go. After drinking his apple juice he was a lot happier. He even asked for more! He was alert and happy as we walked through the hospital and to the car.

In the car the sun was a little bright. Danny tried closing his eyes and could do it fairly well, but he said, "Bright," to me so I put a blanket in front of the window. He fell asleep about half an hour into the drive. His eye was closed pretty well, but it is still very swollen (see bottom picture). He is now asleep in his bed. I'll try to take a lot of pictures of his recovery and post on that tomorrow.