Hi friends, it has been awhile. Since we last wrote, Evie had a few minor procedures that we had been "collecting" in order to justify putting her under anesthesia.
As soon as it was evident that we would be scheduling surgery, the part of my brain that stores away medical info for Evie kicked in, and was ready to unleash the many departments that wanted "in" on an anesthetized Evie, because "awake Evie" is not very cooperative for medical visits (and none of us could blame her!).
Evie's collection of minor procedures included:
1. Strabismus surgery to correct her eye turn (again). For our eye nerd friends, she had bilateral muscle resection of her lateral recti and also her inferior oblique in the right eye, as well as Exam Under Anesthesia (EUA) and DCR.
2. Punctal duct clearing/expanding--Evie's punctal duct anatomy is quite interesting and takes her tears on a roller coaster that goes up and then down, which means that her tears just come back out and run down her face, and then people ask me if she's sad.
3. Eye Exam under anesthesia (EUA): to get a proper assessment of her glasses prescription, they will do objective testing of the retinal reflex and check her retina. Let's just say that Evie has inherited our myopic genes, and needs some myopia control.
4. Cardiology: finally got an echocardiogram, because girlfriend does not like stickers that she didn't ask for.
5. Cerumen cleanout: otherwise known as cleaning out her earwax. She gets in these bad cycles of failing low tones on hearing tests, cleaning out her earwax, and then passing the hearing test.
6. Ear examination--they will be actually able to see inside her ears!
7. G-tube surgery: There has been a lot of excess granulation tissue building up around her feeding tube port. The surgeon cleared off some of this tissue, because it had gotten so high that we had to go up a size in her g-tube button.
It is apparently a small miracle that all 4 specialists were available on a certain date, so we only had a 2-week warning that this was all happening soon. Looking back, we beat the COVID shutdown by a week, and I am so grateful.
I wanted to share some of the tips we learned this time around, in case it helps someone else.
1. Social Stories: Last time Evie had these procedures, she was 2 years old and easily forgot how traumatic it was for her. This time, she is 5 and is going to be SO angry when she wakes up from anesthesia. I read the scheduler's instructions, which listed an e-mail address for Child Life services. I e-mailed Child Life and received a link for the Day Surgery social story, which I will likely edit a bit and then print out to read with Evie 2-3 days before the big day. Hopefully this will help her to understand what is happening when she goes to the hospital.
2. Communication Device: I wanted to empower Evie to be able to communicate in the time that she is waking up and they are just alerting us that we can go to see her in the PACU. I asked Child Life if we could arrange for her to have her Nova Chat in the recovery room, and they said that they would advocate for us to do that. However, while Child Life was so nice and brought her toys in the pre-op and post-op areas, Evie really didn't want anything except Mama, so in the end she didn't need her Nova Chat.
3. Nail cutting and hair trimming: No joke, if your child with special needs is ornery when you try to cut their hair or trim their nails, you can ask the surgeon if they are willing. The ophthalmologist brought this up with us and said it was no biggie if I wanted a nail trim that day for Evie. I got a big kick out of this, but for some people it could be a lifesaver.
4. Waiting in Pre-Op: Parents, don't think that your child will be taken at a predictable time before their surgery time. Our arrival time was 11:45 am, and surgery time was 1:15. Evie got taken in at 2:15 pm. But of course I had forgotten that things run behind, and had waited to eat lunch. I ended up sneaking a candy in the bathroom so I wouldn't pass out from low blood sugar. I was trying to have solidarity with all the fasting children around me, but man, I just couldn't do it. Evie did better than I did and fasted longer than I did.
5. Recovery: This is the hardest part. Evie was so uncomfortable. She wanted to throw up when we got home, but there was nothing to throw up. We had to try small amounts of Pedialyte gradually so she could keep it down. It just broke my heart to see her so uncomfortable and sad. It was a bit like having a newborn again, with staying up all night and rocking her. Thank God she felt much better the next day.
Here we are, 3 weeks out after the surgery. Evie's eye turn is noticeably improved, although not 100%. She does still have watery eyes, but that may be from all the screen time she is getting during this COVID-work from home-homeschooling phase of our lives. All in all, she was a trooper, and we are so thankful for the care we were able to receive in person, just in the nick of time.
If you have read this whole thing, you are a true Evie fan or a fellow parent of a medical needs warrior. Much love to you.
As soon as it was evident that we would be scheduling surgery, the part of my brain that stores away medical info for Evie kicked in, and was ready to unleash the many departments that wanted "in" on an anesthetized Evie, because "awake Evie" is not very cooperative for medical visits (and none of us could blame her!).
Evie's collection of minor procedures included:
1. Strabismus surgery to correct her eye turn (again). For our eye nerd friends, she had bilateral muscle resection of her lateral recti and also her inferior oblique in the right eye, as well as Exam Under Anesthesia (EUA) and DCR.
2. Punctal duct clearing/expanding--Evie's punctal duct anatomy is quite interesting and takes her tears on a roller coaster that goes up and then down, which means that her tears just come back out and run down her face, and then people ask me if she's sad.
3. Eye Exam under anesthesia (EUA): to get a proper assessment of her glasses prescription, they will do objective testing of the retinal reflex and check her retina. Let's just say that Evie has inherited our myopic genes, and needs some myopia control.
4. Cardiology: finally got an echocardiogram, because girlfriend does not like stickers that she didn't ask for.
5. Cerumen cleanout: otherwise known as cleaning out her earwax. She gets in these bad cycles of failing low tones on hearing tests, cleaning out her earwax, and then passing the hearing test.
6. Ear examination--they will be actually able to see inside her ears!
7. G-tube surgery: There has been a lot of excess granulation tissue building up around her feeding tube port. The surgeon cleared off some of this tissue, because it had gotten so high that we had to go up a size in her g-tube button.
It is apparently a small miracle that all 4 specialists were available on a certain date, so we only had a 2-week warning that this was all happening soon. Looking back, we beat the COVID shutdown by a week, and I am so grateful.
I wanted to share some of the tips we learned this time around, in case it helps someone else.
1. Social Stories: Last time Evie had these procedures, she was 2 years old and easily forgot how traumatic it was for her. This time, she is 5 and is going to be SO angry when she wakes up from anesthesia. I read the scheduler's instructions, which listed an e-mail address for Child Life services. I e-mailed Child Life and received a link for the Day Surgery social story, which I will likely edit a bit and then print out to read with Evie 2-3 days before the big day. Hopefully this will help her to understand what is happening when she goes to the hospital.
 |
| We practiced on a doll and read Doctor Maisy to help her prep for pre-op, but in the end she still screamed her head off during vital signs. |
2. Communication Device: I wanted to empower Evie to be able to communicate in the time that she is waking up and they are just alerting us that we can go to see her in the PACU. I asked Child Life if we could arrange for her to have her Nova Chat in the recovery room, and they said that they would advocate for us to do that. However, while Child Life was so nice and brought her toys in the pre-op and post-op areas, Evie really didn't want anything except Mama, so in the end she didn't need her Nova Chat.
3. Nail cutting and hair trimming: No joke, if your child with special needs is ornery when you try to cut their hair or trim their nails, you can ask the surgeon if they are willing. The ophthalmologist brought this up with us and said it was no biggie if I wanted a nail trim that day for Evie. I got a big kick out of this, but for some people it could be a lifesaver.
4. Waiting in Pre-Op: Parents, don't think that your child will be taken at a predictable time before their surgery time. Our arrival time was 11:45 am, and surgery time was 1:15. Evie got taken in at 2:15 pm. But of course I had forgotten that things run behind, and had waited to eat lunch. I ended up sneaking a candy in the bathroom so I wouldn't pass out from low blood sugar. I was trying to have solidarity with all the fasting children around me, but man, I just couldn't do it. Evie did better than I did and fasted longer than I did.
5. Recovery: This is the hardest part. Evie was so uncomfortable. She wanted to throw up when we got home, but there was nothing to throw up. We had to try small amounts of Pedialyte gradually so she could keep it down. It just broke my heart to see her so uncomfortable and sad. It was a bit like having a newborn again, with staying up all night and rocking her. Thank God she felt much better the next day.
Here we are, 3 weeks out after the surgery. Evie's eye turn is noticeably improved, although not 100%. She does still have watery eyes, but that may be from all the screen time she is getting during this COVID-work from home-homeschooling phase of our lives. All in all, she was a trooper, and we are so thankful for the care we were able to receive in person, just in the nick of time.
If you have read this whole thing, you are a true Evie fan or a fellow parent of a medical needs warrior. Much love to you.
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