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. =(