Surgery Update (now with even more updates)

Dec. 23rd Elly just woke up (for more than 30 seconds) in good spirits. It has been 7 hours since her surgery.  The first thing she wanted to do was see her red eyes and because of the book “Pinkalicious,” she wanted to drink something pink. If you haven’t read this book, I reccomend it before this surgery as the little girl turns pink and crys pink tears. Then she wanted the bandage off her hand that had the IV and her name bracelet from the hospital off.  Her eyes are still red (more than I had expected) and has bloody tears.  She threw up the Gatorade they gave her all over the car, but is now drinking water and eating saltines.  Nothing like a coating of surgery blue liquid over everything to lighten up the mood.  We had a plastic bag, it just wasn’t out and ready.

She has been napping since the procedure, only waking up for seconds to tell us she was thirsty.  She would sip and then throw up. We took turns sitting by her bedside.  The hospital staff encouraged us to have her sleep as much as possible and reminded us that it takes 24 hours for the drugs to leave their system, so we need to closely watch her.  I completely panicked this afternoon when she woke up and said, “I can’t see.” It took me a millisecond to realize it was because she didn’t have her… glasses on. Her eyes are sometimes turning in, which the doctor said was a good thing, as her brain is recognising the change.   I am still completely a nervous wreck.  As I type and she is eating her crackers there is blood dripping from her nose (they said this could happen), bloodly tears slowly dripping down her cheeks, and reddish purple eyes.   It makes me want to cry and I do hope she is not in as much pain as she looks like she is.  It is like a picture from a Horor Film.  As soon as she is done eating, we are going to have some major mommy and Elly time. 4:30 p.M.

Update: It is now 6:00 and we just ate dinner.  She hasn’t thrown up in about 3 hours and we gave her rice with some cinamin sugar and milk – of course she wanted some chicken too.  I am hoping it wasn’t too much.  She is now in her Cinderella dress up costume trying to convince her papa to do flips with her (not a chance) They have settled on dancing to the music on the radio.  We have had 2 more bloody noses and some more tears.  Her right eye looks worse than the others and has more red and purple than the other eye.

For parents whose children may have to go through this or a similar procedure in the future

Things to remember; Put your kid in a button down blouse or jammies, stay positive at all times and use words like “an appointment at a different place,”  The book “Pinkalicious” was great because she LOVES being Pink and has Pink Tears.  Bring your kids blanket, doll or other lovey.

Things to have on hand for recovery; Gatoraid or Apple Juice Boxes, Popsicle, Children’s Tylonol or what pain relief your PO says is ok to give.  Fun treats or packages to open after medicine placement (gel or drops)  4 for every day

Update Dec. 26th:  Elly’s eyes are still very red.  Maybe someday I will have enough guts to post a picture of her eyes.  I still look at the blood-shot eyes and sad face and cry…maybe when they get better I can post it to help parents understand what their eyes may look like.  Just not now.  The IV left a really big hole in her hand and it has bruising around it, but she doesn’t seem to notice.  We have also had pretty good luck with the gel medicine.  I asked about the drops since parents had posted that they were easier, but the PO said the gel was more effective – so we tried that first.  All the Christmas candy is coming into good use.  My child, who normally doesn’t have candy, is in LOVE.  After each placement of medicine, she gets to choose a treat (piece of candy cane, M&M, gum drop and more)  This morning, she started negotiating for more.  “If I hold still for 2 eyes, then I should get 2 pieces of candy.”  Ok, not a problem in this household… here you go.   Then 30  minutes later, “Mom, I’m ready for the medicine again!”  She had found another cool Christmas treat. (not a chance, must wait a couple more hours)  At least it is making the process more bearable and she is willingly coming to get the gel in.  They said it doesn’t sting, but makes their vision a little cloudy where it covers the eye.  I still have to pry her eyes open to get it into the corner, but I have to admit, it is WAY easier than putting the atropine drops in her eyes. I think that is because I know it is not hurting her, but helping her recover faster.

December 29th.  We had our post op appointment today.  It started out with me dragging Elly out of the car to see the PO.  “I do NOT want to see her today.”  she screamed.  I reminded her this was the usual place and that all she was doing is checking her eyes today.  This did not go over well.  When she saw our PO, she took off running the other way, so fast that she biffed it and skinned her knees and hands on the sidewalk.   When we finally got her in the exam room ( the po grabbed a slinky as a gift to Elly and completed her exam with expert speed!) Elly repeated that she did not like Dr. Khuddus.  We tried to be quick and positive, but it looks like the eye with bad vision is turning in further than expected.  ARGH.  I understand that the brain is similar to the beginning and we have to begin to train it all over again that yes, that eye does need to be used.  Back to patching….  Thank goodness I had put a whole bunch of fun books on hold at the library.  We stopped there on the way home and Elly was ok with patching while we looked at all of our cool new books.  I am just praying we can get these eyes straight as I have absolutely no desire to go through this surgery any time again soon. =(

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22 responses to “Surgery Update (now with even more updates)

  1. I’m glad to hear Elly is awake & doing well. I can only imagine what you are going through worrying over her! Lots of prayers are coming your way that she’s up and normal soon!

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  2. I’m glad that Elly is up and feeling better this evening for you! It must have been incredibly stressful for you especially! We have been praying for you! I know it is very hard to watch your child go through something like that. Just remember that you did it for her best! She is a tough little girl and will be able to conquer anything in life because of all she has gone through. Kids are so resilient and tough, it is amazing! We will keep you in our prayers! I hope Elly continues to make improvements and you will all get a good night’s rest tonight… though it might be hard with a newborn in the house, too. 🙂 From our experience, tomorrow should be a much better day and your Elly will be back to her normal self in no time!

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  3. Thanks for the update! It was good to hear that Elly is doing better tonight. It is never easy to see your kids go through tough things like this. I’ll continue to keep you all in my prayers!

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  4. So glad to hear Elly is doing well. Our Jonathan is scheduled for surgery on Jan. 5, 2010 and I’m very anxious to think about his red little eyes and tears. He’s only 2!! Little man doesn’t know what’s coming. Please keep us posted on Elly’s status!!

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    • Hope all goes well for Jonathan. Elly is 3 and has NO idea what just happened to her, just that her eyes are a little sore. Poor babies… but oh, what a wonderful thing that they have such great technology so that our little ones may have the possibility of better vision and less straining.

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  5. Hi Ellie’s mom. I was just wondering how little Ellie is doing now? She is such a trooper.I was thinking of her and hoping it has all settled down and the results are what you were hoping for. I am always interested in your progress as I think my daughter seems very similar to yours!! Particularly when I saw the pictures of Ellie and her exotropia (she is gorgeous by the way!!) and it seems fairly mild? It is a lot like Paris except it seems to be only one eye that is deviating out at the moment mostly. She has been patching for four months and wears the glasses full time. The eye is straight a lot of the time in glasses but has definitely deteriorated without them. I honestly think we will need to go down the surgery path in a year or so. Paris is two. Her script is -4.5 in the right with some astigmatism correction as well which brings it up to around -5. 5 and she is plano in the left. Her vision in the weak eye seems to have improved with the patching but I was wondering when they know it is at it’s optimum and when it’s time to operate? Have you heard much in the way of what is the best age. My PO seems to think around school age? Anyway, I really hope it is all going well for Ellie and really looking forward to hearing more on her progress soon. Ingrid and Paris x

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  6. Well, I can say that the last 2 weeks have been rather difficult. Elly hasn’t slept through the night yet, waking up screaming, disoriented, and lonely. (between her and a nursing 7 week old, I am beat) She also went through a week where she completely digressed and refused to pee on the toilet (she is 3 1/2) Our PO thought kindergarten age, but since her eyes progressed so well with full time patching and they were similar in vision that having the surgery done now may give her the chance to gain depth perception.The turn started out with just one eye, but as her vision improved, both began to turn outward. She will always be in a high script (-1.5, .8.5) It has been 2 weeks and her one is still red. The turning in has gotten better and we are still patching 3 hours a day. My biggest problem right now is that she does NOT want to wear her glasses. The only time this happened in the past is when her perscription was off, so I am wondering if the glasses are giving her headaches. We put a call in this morning to the PO and are awaiting their advice.

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  7. I can relate. Its a very hard thing to go through. Did your daughter have bilateral lateral rectus recession or monocular recess-resect procedure? How is she doing now??

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  8. Bilateral Lateral Rectus – It is January 11th and we are still having a lot of light sensitivity and behavior issues that began right after surgery. Since our first OT visit last week was very strenuous, followed by an entire afternoon meltdown, we are going to take a couple weeks off. The 2nd post op visit went much better yesturday and they are happy with how it is healing. They want her to be a little cross eyed now as her eyes are expected to drift out. Everyday they begin to look a little straighter. All kids react differently, mine just took the change really hard. We tried shopping at a store for the first time yesturday and had to leave after 30 minutes because she started crying and covering her eyes because of the bright lights.

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  9. Hi there! Thank you so much for sharing Elly’s story! Can you give another update on Elly please? It looks like my 19 month old will be going in for the same surgery very soon. We have been told that 85% of children need only one surgery but that about 15% need two surgeries in order to get correct alignment. We were also told that whether the first surgery was effective is known after about 6 weeks. Has Elly had that assessment? Hoping you all are doing marvelously now!

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  10. Thanks for sharing your story. We will be having eye muscle surjury on our little boy in April. He will be 10 months old then.
    I think I needed to read your story to get ready to cope with red tears, bloody nose, throw up from a baby who will have no idea how to communicate with me.
    Also is helpful they will be drowsy all day and light sensitivity.
    The eye drops will be a big challenge without really any good bribes safe for babies. Best of luck to you, Elly, the nursing newborn, potty training, not sleeping through the night and other behavior issues. All that combined makes for very long days and nights I am sure.

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  11. Hi Maegan. Our daughter had eye muscle surgery when she was nine months old, and probably had a very similar diagnosis to your son! Although it is hard to watch a baby go through this, I think that it is easier than when they are older. Our daughter was very clingy the day of surgery, but she was back up and doing her normal thing the next day. She never did have bloody tears, which I was thankful for. As for the eye drops, it worked best when I gave it to her when she was sleepy, and it didn’t seem to bother her too much. The good thing is when they are so little, they can’t fight you too much. 🙂 One word of advice for immediately after surgery: When our daughter woke up, she was completely beside herself. They were about to give her something to calm her down, but thankfully they brought her to me first. Since I was still nursing her, and breastmilk is considered a clear liquid (go figure! :)),I was able to nurse her immediately and she calmed right down and went back to sleep. If you are not nursing but your son has a pacifier or favorite blanket or something, make sure you have it ready for when he comes out of the anesthesia as he will be completely confused about what just happened to him and just need some comfort. If you have any specific questions, feel free to ask away. There are several parents on here, who have gone through this with their children. All the best to you and your little son!

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  12. It was really helpful to read all of this. Honestly, my daughter is having strabismus surgery in March (at 12 months old) and I get more and more nervous as the time approaches. She has no known vision in the eye that is being operated on. We’re doing it to help her eyes move more in conjunction and also to allow them to see binocularly (at the chance that she does have even the slightest amount of vision in the eye). We had originally scheduled this back in December but she became sick the week of. We went through the pre-op and everything and nobody has mentioned any of what you went through (bloody tears, vomiting, anger). God are we doing the right thing?

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    • Jeni, I just wanted to add another voice of support. My daughter had the same surgery at 22 months (you can read my write up here: https://littlefoureyes.com/2008/09/01/surgery-redux/. She did have bloody tears and was extremely angry upon coming out of anesthesia, but she recovered more quickly than Elly did. It’s a scary thing, and I wish there was more information about what to really expect after surgery. But Amomofelly is right in that it’s a pretty common surgery for the surgeon, just so much out of the ordinary for most parents.

      Best of luck to you and please keep us updated on how your daughter is doing.

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  13. Jeni – don’t panic – most kids take it much easier than mine did. And yes, if we as parents are presented with all the information and we have the opportunity to give our children a chance at seeing the world with better eyes, then we must take advantage of these opportunities. Although Elly will never be a pilot… she may now be able to focus on tasks for longer periods of time without headache. She may also have the chance at gaining depth perception. Each child is different and for Opthamologists, this is a pretty common surgery, but for us parents, our children are our most precious treasures in the whole world and it is much harder on us than anyone else.

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  14. Thank you both for your support and for sharing your experiences. I’ll be sure to check back in and let you know how it goes.

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  15. Here is another surgery experience for all of those interested. My son had bilateral lateral rectus reccession at 9 months but it was not successful. The eye that turned out continues to turn out constantly unless the other eye is patched. He did have bloody tears and was in a terrible mood for 2-3 days post-op. He had a lot of swelling and a difficult time opening either eye for those days as well. The PO that did the surgery has since retired. The new PO wants to shorten the inside muscle of the right eye only. I have to say the I am very skeptical of the outcome considering the first experience, but I feel like there isnt any other choice. My son is now 19 months old and I hope it works and that he tolerates the whole surgery better than the first time. I think its important to say that every child does have a different experience.

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  16. I just wanted to post back and share. My daughter had her surgery at 1 year, one week old and it went off without a hitch. She was clingy and disoriented afterwards, but was actually back to playing happily that afternoon. We were shocked. I think it probably helped that the surgery was only on one eye and that eye has very little vision (if any). I appreciate the support from you all and having this out of the way makes me less apprehensive about any necessary future surgeries. *phew*

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