Trying To Keep The Faith

Ainsley's day started off with me cleaning crusted blood streaks off her cheeks.The swelling actually appeared worse but I think it just changed and maybe the upper lids are sagging down because there is less fluid, I'm assuming that's what the streaks were. The bruises are turning yellow so that that's a good sign that she's healing. After her eye ointment treatment, Tylenol and a cold compress she wasn't thrilled. She was back to being grumpy and clingy because her eyes were shut. I don't know, perhaps the eyelashes flipped back in again but I can't spread the eye enough to be sure because I'm afraid of tearing the corner of her eye.

I'm back to thinking maybe the lashes just aren't there. My fear is that he shortened her eyelids too much and she's going to have small funny looking eyes. I'm really trying to keep the faith and just wait until the swelling is down but I did have a freak out moment. The doctor said it'll probably be 3 months before we really know what it's going to look like. 3 MONTHS?! I'm not a patient enough person for that. It's really hard not to look and try to imagine what her eyes are going to look like. They are her EYES. It's kind of important. I think 3 months is a gross overestimation. I suspect we'll have a pretty good idea by next week and within a month at the most. Any changes that happen in months 2 & 3 are probably going to be barely noticeable.

As the day went on she opened her eye(s) a bit and was happier. The kids hitched a ride home with a neighbor who stayed for a homework party. Ainsley was happy to sit at the table and color. She must be able to see a little because she's not fearful and she's crawling around the house a bit.

We have an appointment at 3:30 tomorrow for the surgeon to look at the area that came apart. It looks a little better than it did because it's not a fresh incision, and the swelling has decreased since we first called him about it.  I'm not sure if there is anything he'll be able to do, but I hope he can get it back a little tighter in place so it heals in a nice thin scar.

She's still sleeping in our bed because her head needs to be elevated to reduce swelling and she normally sleeps on her tummy or side which is very scary in her current condition. Holding her hand while she sleeps was sweet at first but I'm getting tired and would just like a good night's sleep. Hopefully when we wake up her eyes will look better.

Twisted Eyelashes A Turn For the Better

Last night after calling the surgeon I had to call them again. As I spread her eyes apart to put ointment in them I noticed her lashes were tucked up INSIDE HER EYE! It was the freakiest thing to touch the area with the swab and have them all flip back out. About 1/2" worth. In case you've never noticed Ainsley has long thick lashes. This is something that can happen when the eyelids swell this much. Ouch! I was afraid that perhaps they'd scratched her eye which appear quite blood red and swollen. At the very outer corner I couldn't see lashes. I kept trying to get a better look but she was resistant and I was afraid of hurting her or further damaging the suture at that corner because it was coming apart. I called the surgeon to let them know about both the lashes that had come out as well as the missing lashes (which honestly I think they dismissed). They thought they wouldn't do anything until Tuesday, but said we could see the fellow (not the surgeon) on Monday.  It really looked like she was missing the lashes at the last 1/4" of her eye. Knowing they "shortened" her upper lid I was a little freaked out that maybe he cut off too much of her eyelid. But I tried tell myself to wait until I could really see the final result.

Dr. Sires checked in with us today and surprised us by saying he wanted us to come in today to see the fellow. So we got cleaned up and headed to their office to meet her at 3:00.

Ainsley was still pretty miserable but kind of happy to get out of the house. The swelling had come down quite a lot since yesterday as you can see she's looking pretty good.

I am so glad they brought us in to be seen. It turned out that those missing last 1/4" of lashes were still turned up inside her eye! Even the doctor missed it the first time she looked. Then she put some dye in her eye to make sure there were no scratches on her cornea and there weren't. Hooray! We'll be using lots of antibiotic ointment in her eyes to be sure she doesn't get an infection. And they want to see her back Tuesday to look at where that lower lid is coming apart.

Then we stopped for milkshakes and fries. Ainsley asked for some tastes and actually liked the shake. That's a first! I swear she opened her left eye a crack.

Then by the time we got home she was remarkably better.

 

She sat on the floor with Evie and Adrian and played catch. I think her left eye is open just a hair. I think she'd been squishing her eyes tightly shut because of the lashes. Poor kid. Sheesh!

Now she is acting almost normal.  We've been home an hour or so and she's allowed me to step away. Thankfully it appears she's released me as her hostage. I wasn't sure how we were going to manage when Steve wasn't home.  She still can't see very well. So I guess now we know what was causing the spikes of pain and the extreme clingy behavior.  My eyes sting and burn just thinking of it. I'm pretty sure we are going to see her bounce back really quickly now.

Ptosis Correction Surgery Recovery Day 2

It seems that the swelling peaked early today and then started to go down some. I'd hoped perhaps her eyes would open, but it doesn't look like they will. And unfortunately she is still very distressed at not being able to see. She panicks if I get up so we've been laying in bed all day.

We were told to do cold wet compresses for 10 minutes every 10 minutes. We did a lot at the hospital the first day and I started to notice the dissolvable stitches were coming out yesterday. By today they are gone. I keep telling surgeons that I don't like them because they don't last long enough.

I got up to get her food and told her to stay there, in the center of the bed. She must have panicked and crawled away from the center of the bed looking for me and fell out. I ran upstairs and she was sitting on the floor.  I looked her over and she was fine but she was bawling and the tears from her right eye were especially bloody. (This photo was taken an hour or so ago.) Since the swelling had gone down a little I very gently spread the lids so I could see and it appears that the corner of her eye is no longer stitched together and is separated where they did the canthopexy.  I called the surgeon and he assured me that if there is a problem he can fix it but for now there is nothing they can do because of the swelling. I'm afraid it will heal this way and leave a wider than desirable scar that they will say is "good enough". I can't help but think perhaps nylon stitches might have made a difference, but I suppose with this degree of swelling it might have torn. At this point we have to wait for the swelling to go down. I hope things go better tomorrow. The surgeon will see her Tuesday, Monday if it looks like it's more urgent but the swelling has gone down enough they could do something. Her legs don't seem to be bothering her at all.  We're supposed to keep with the ice packs but she doesn't like it anymore, I think perhaps it doesn't hurt enough that it feels good to her anymore.  She is just SO miserable and clingy. And I can't leave her alone even for a second. And she wants me, not daddy, Evie or Adrian.  I'm really hoping that the swelling goes down enough so she can see even just a little because I think that will make all the difference. I hope I'm not encouraging her dependence on me and making it worse by holding her all day and night. I just feel so bad for her and don't know what else to do. 

We're Home Now

We had a bit of a rough night. I was surviving on less than 5 hours sleep and Ainsley kept waking crying every 10-20 minutes or so just when I'd fall asleep. She finally started to settle about 2:30 am but then we got a roommate at about 3:30 am. Then the doctors started showing up about 6:30.  I think she was mostly unhappy to be there so I pushed to get discharged as soon as possible. We had the paperwork complete and everything packed up by 10:30am.

The boots were filled and we were on our way. It felt great to get her back in the stroller and push her on out the doors! 

I wish I could say that made all the difference. I would be lying. She is miserable. Mostly I think because her eyes are swollen shut so she can't see. She HATES that! I think the oxycodone is enough for the pain. All the memories are coming back, and I'm remembering how hard it was and will be again until she can see. My recollection is it takes about a week. The problem is she cries if I leave her, even to get up for a minute. I'm not going to be able to sit in bed with her 24/7 for a week. And the crying isn't good for the swelling.

Her eyes are SO puffy, even more so than this morning as you can see in this picture I just took.

It doesn't look too bad in the picture but there isn't much more it could swell. I'm hoping we are at the peak now and it will start to get better rather than worse.

Little cutie. She could hear I was taking her picture and I think she was trying to smile. A+ for effort Ainsley after what you've been through.

The Pic You've Been Waiting For

It is a very strange feeling to push an empty stroller around the hospital. I always hate that part. Sometimes I forget that Ainsley's not in it. During it all I try to remain stoic, but seeing her empty boots on the bonnet of the stroller while we were waiting for her made me feel a surge of emotion.

Luckily we didn't have to wait long, about then we got a page with our room assignment and after about an hour they brought her from recovery. It took about that much time for the respiratory therapist to get her trach supplies and equipment ready so the time flew. Ainsley seems pretty comfortable at the moment while she is still on morphine. Clearly there is a lot of swelling and she cannot open her eyes. We are doing cool compresses every 10 minutes. There is very little lid but I think that is because it is underneath the swollen part of her eye. I hope. 

The incisions look good. The keloid is gone.

This is what they removed from her legs. I don't know what I was thinking because I expected them to be thinner and smaller, but I guess it makes sense, these plates held the two pieces of her legs together while the bone healed. They are about 2 1/2" long, larger they are in this picture. It's no wonder they were bothering her. Geez how could you have those screwed into your legs and it NOT bother you?! I'm so glad they are out!

Hopefully we will have an uneventful night and be leaving after rounds in the morning.

Thanks everyone for your prayers and positive thoughts. It means so much to know how much everyone cares. We are so relieved that this eyelid surgery is behind us! If it's weren't against hospital policy I'd be having a good stiff drink right now. Oh well.....coffee will have to do.

They Are Just Wrapping Up

About 20 minutes after the page Dr. Sires emerged from the OR to meet us. He said things went great. He was able to use the tarsal grafts to prop up that lower lid. This, in addition to the canthopexy procedure, should eliminate the slanted appearance to her eyes (which was really more tissue related). He said he shortened the upper eyelid. ??! That wasn't in the pre-op consent form. You can bet I'll be eager to see what that means. He shortened the levator muscle, the one that lifts the upper lids. As is often the case for patients with ptosis, her muscle contains a lot of fatty tissue which is why it doesn't work very well. 

We will wait and see the results from this surgery. This may be good enough, or she may require a frontalis sling as the final step in correcting the ptosis. Yes, we knew that. It will be about 2 weeks before we can really get a good idea of the result, though I'm sure she is going to look really different right away, and 6 months before all is really settled and with the scarring and all and we can see the final result.  The scary part is over.

We are so seasoned now that 4 inch incisions on the legs and removing metal plates seems like no big deal. Crazy. Shortly meeting with Dr. Sires, Dr. Song paged us to meet him. Again all went well for the ortho team. There was a little fluid in the right leg, oddly the opposite of the one that had been bothering her the most, likely in response to the plate. They removed some of the keloid scarring and used the adhesive type closure. He said that part of the itching may have more to do with the hardware than the keloid and unfortunately the keloid may return (which I knew as patients that tend to form keloids, well...tend to form keloids). We'll be hoping it doesn't come back but it very well might. The last ones formed many months later so it will be a long time before we'll know for sure. Ultimately I just want her to be comfortable since something about those incisions has been really irritating to her for awhile now.

As I type this they are probably doing the brain MRI. We'd like to see how her cerebellum looks now that she's older and bigger, and since the two prior scans that were taken when she was a baby were different from each other. In addition it will be nice to see if everything else is in her brain developing normally.  There probably won't be anyone to read it for us, so we may not know for weeks but I'll post about that when I know.

We are waiting for her to come out of recovery and it always takes a long time to get your room assignment. 

I CAN'T WAIT TO SEE HER!

Eyelid Surgery Started

We arrived for check in at 6:15, eventually we went back to the pre-op area and then met with 10 different people about all the things they are doing. Finally I walked her back and held her hand when she was put under in the OR at 8:55. The surgery is supposed to take 1 1/2 hours and we are still waiting for our page. Hopefully all went well. Then she'll be having the plates removed from her legs, and finally she will have the brain MRI. So it's going to be a long time before she gets checking into a room for the night. And we won't get to see her until it's all done. 

Evie and Adrian giving hugs. She LOVES her big brother and sister!

They made her a couple pictures to take with her and hang in her hospital room. It was sweet.

Waiting with trepidation.

*****

They just paged us at 10:25. They were finishing up and the orthopedic team is getting ready to do their part, removing the plates from the hip and leg reconstruction that was done in April. They are also going to be removing this, which has been really bothering her. They marked her legs for the surgery today. With non-permanent ink. Sure enough she was scratching. The docs thought she was playing with markers at home. Nope that would be the ink from their pen.

It's going to be a long day.