Is there anything left to write about now that we have a clean bill of health so to speak? We will continue to post on Aaron's development and his eye checkups because as noted previously, congenital glaucoma is for life - although we hope that future posts of this nature will be slightly less dramatic and mostly about how well he continues to do after the 360 degree trabeculotomy in October.
Congenital glaucoma can have a happy ending if it's caught early enough like Aaron's was; however, we know from speaking to other parents that catching it early isn't always easy. The symptoms aren't well known and it's such a rare condition, many medical professionals wouldn't recognise it either. It can end up being misdiagnosed which results in lost vision for children.
My very first job was working for Pete Blackshaw who founded Planetfeedback.com and is one of the co-founders of the Word of Mouth Marketing Association, so naturally I believe that spreading the word about eye health, congenital glaucoma, its symptoms, treatment and where to get the best care (Moorfields and Mr Brookes obviously) is critical to helping others overcome congenital glaucoma. So no, I'm not going away just yet ;-)
Saturday, 17 December 2016
360 degree trabeculotomy success
Spoiler alert: the EUA to assess Aaron's eyes following the 360 degree trabeculotomy for his congenital glaucoma had really good results. Normal intraocular pressure in both eyes. Healthy optic nerve. Good looking corneas and pupils. Best. News. Ever.
Once again we had a great experience at the Richard Desmond Children's Eye Centre at Moorfields. A nurse called the day before with fasting instructions and Aaron decided he wanted 4.5 ounces of milk at 2 am and another 4 ounces at 5 am so he started the day with plenty of fuel. His breakfast cutoff was 7:30 am and he woke up at 7:28 (probably exhausted after all those night feeds). Adam rushed Aaron downstairs and strapped him in the highchair and I fed him a pot of porridge and then a fromage frais before he even knew what was happening. We finished at 7:33. Good lord. Little man then drank almost 7 ounces of expressed breast milk at 9:30. That's a lot of info but for those who know Aaron well, you know that this is SO MUCH FOOD for someone who often barely wants 15 ounces of milk in a day.
Aaron spent the ride up to London looking out the train windows and when we got to Moorfields at midday, he played happily with the copious toys available at RDCEC. He didn't seem that bothered about fasting, which was a relief! I guess it's partly due to his morning feast and also, last time we went in he was five months old and breastfeeding every two hours. The schedule (I use that term loosely) we have him on now, he'd really only missed his lunchtime solids.
Our wonderful doctor, Mr. Brookes, came out to explain the EUA procedure and have us sign the necessary forms. He told us Aaron won't remember any of this when he's older (which makes sense - I don't have memories before age 3??) and that he was expecting good results. Mr. Brookes is always calm and patient and in turn it puts us at ease as well.
The anaesthetists came to speak with us around 13:15 and agreed we didn't need to sedate Aaron before his cannula went in, which was good news. The lead anaesthetist pointed out that I had glitter all over my face?! 'Like that guy from Twilight when he goes in the sun?' Gah. No idea why I was covered in glitter but the comic relief helped as our next stop was the operating theatre to get Aaron knocked out for the EUA. They found the vein really fast in his right foot and warned us he'd look like he was awake but he'd really be asleep. Even with the warning I was shocked to see Aaron so out of it, all the light gone from his mischievous little eyes.
Adam and I went to get a coffee and a sandwich and by the time we got back upstairs (15-20 mins later?), Aaron was awake-ish and in recovery, swaddled in a blanket and being lovingly cradled by one of the Moorfields team. He gulped down 6 ounces of milk and desperately wanted to crawl around but was like a little drunk man and kept falling over (we had him in the cot at this point, not on the floor).
Mr. Brookes came out in between his other surgeries to give us the report on Aaron. The 360 degree trabeculotomy had done it's job, Aaron's intraocular pressures were in the normal range (normal ranges from 12-22 mmHg) and his eyes were healthy. And no more drops! Amen to that.
We go back in a couple of months to assess how Aaron's vision is developing, whether he needs glasses, patching, etc. and to measure his intraocular pressures. Even though Aaron's prognosis is so good, congenital glaucoma is for life and he will always have to have checkups. Adam and I will need to get checked for glaucoma eventually too and apparently, since Aaron has congenital glaucoma, our eye exams will be free?! Need to check on the details of this.
At any rate, we are super happy as the results of the 360 degree trabeculotomy are far better than we could have ever dreamed. Why and how on earth Aaron ever managed to develop congenital glaucoma we will never know but we feel incredibly blessed to have been referred to Mr. Brookes and RDCEC.
 |
| No cloudy corneas for this kid |
Aaron spent the ride up to London looking out the train windows and when we got to Moorfields at midday, he played happily with the copious toys available at RDCEC. He didn't seem that bothered about fasting, which was a relief! I guess it's partly due to his morning feast and also, last time we went in he was five months old and breastfeeding every two hours. The schedule (I use that term loosely) we have him on now, he'd really only missed his lunchtime solids.
Our wonderful doctor, Mr. Brookes, came out to explain the EUA procedure and have us sign the necessary forms. He told us Aaron won't remember any of this when he's older (which makes sense - I don't have memories before age 3??) and that he was expecting good results. Mr. Brookes is always calm and patient and in turn it puts us at ease as well.
The anaesthetists came to speak with us around 13:15 and agreed we didn't need to sedate Aaron before his cannula went in, which was good news. The lead anaesthetist pointed out that I had glitter all over my face?! 'Like that guy from Twilight when he goes in the sun?' Gah. No idea why I was covered in glitter but the comic relief helped as our next stop was the operating theatre to get Aaron knocked out for the EUA. They found the vein really fast in his right foot and warned us he'd look like he was awake but he'd really be asleep. Even with the warning I was shocked to see Aaron so out of it, all the light gone from his mischievous little eyes.
Adam and I went to get a coffee and a sandwich and by the time we got back upstairs (15-20 mins later?), Aaron was awake-ish and in recovery, swaddled in a blanket and being lovingly cradled by one of the Moorfields team. He gulped down 6 ounces of milk and desperately wanted to crawl around but was like a little drunk man and kept falling over (we had him in the cot at this point, not on the floor).
Mr. Brookes came out in between his other surgeries to give us the report on Aaron. The 360 degree trabeculotomy had done it's job, Aaron's intraocular pressures were in the normal range (normal ranges from 12-22 mmHg) and his eyes were healthy. And no more drops! Amen to that.
We go back in a couple of months to assess how Aaron's vision is developing, whether he needs glasses, patching, etc. and to measure his intraocular pressures. Even though Aaron's prognosis is so good, congenital glaucoma is for life and he will always have to have checkups. Adam and I will need to get checked for glaucoma eventually too and apparently, since Aaron has congenital glaucoma, our eye exams will be free?! Need to check on the details of this.
At any rate, we are super happy as the results of the 360 degree trabeculotomy are far better than we could have ever dreamed. Why and how on earth Aaron ever managed to develop congenital glaucoma we will never know but we feel incredibly blessed to have been referred to Mr. Brookes and RDCEC.
Tuesday, 13 December 2016
Counting down to the EUA
Three days to go to the EUA and with the exception of the odd trip to the dry cleaner and the supermarket, Aaron and I are pretty much quarantined (Adam still has to go to work). We were planning to go to the Bach to Baby Christmas concert this morning but in the end, Aaron's a bit raspy and all of our baby friends have been sick so I don't think it's wise for me to take him out because let's face it, these outings are mostly for me rather than him! (Aaron does like music though - I really did think he'd enjoy the concert!)
Sitting in the house all week (during weather that BBC Breakfast described as 'dull and murky'!!!) is straight up grim but we have not come all this way from the 360 degree trabeculotomy to have our EUA cancelled due to illness! In addition to feeling a bit stir, I'm also trying not to think about Friday - the fasting, the logistics, how to entertain Aaron once he realises he's starving and not going to get fed and of course most of all, what the results will tell us.
It's all been positive so far, touch wood. We stopped the twice daily Pilocarpine drops on Friday and I keep watching for some drastic change in Aaron's eyes, for the symptoms of the congenital glaucoma to reappear, but as of yet he seems ok. So once again we wait. We go for short walks. We sing songs. We speak to people over FaceTime. And we greet Adam at the door at night like overexcited (albeit slightly moody) dogs. Hopefully poor Aaron doesn't go mad having only mummy for entertainment all day :) :)
Sitting in the house all week (during weather that BBC Breakfast described as 'dull and murky'!!!) is straight up grim but we have not come all this way from the 360 degree trabeculotomy to have our EUA cancelled due to illness! In addition to feeling a bit stir, I'm also trying not to think about Friday - the fasting, the logistics, how to entertain Aaron once he realises he's starving and not going to get fed and of course most of all, what the results will tell us.
It's all been positive so far, touch wood. We stopped the twice daily Pilocarpine drops on Friday and I keep watching for some drastic change in Aaron's eyes, for the symptoms of the congenital glaucoma to reappear, but as of yet he seems ok. So once again we wait. We go for short walks. We sing songs. We speak to people over FaceTime. And we greet Adam at the door at night like overexcited (albeit slightly moody) dogs. Hopefully poor Aaron doesn't go mad having only mummy for entertainment all day :) :)
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