So despite my best efforts to keep the faith this week, I caved and had to phone the doctor. Aaron's eyes had been tearing more than usual, a textbook symptom of the congenital glaucoma and I was convinced his pressure was sky rocketing. Also, his left eye has been red and has this goopy piece floating around. I did try and write it off. I showed a friend and my mother, hoping to hear 'oh it's probably nothing, don't worry' - but really who would say that about a six-month old baby who's just had eye surgery and whose eyes are visibly running? Of course we all agreed it wouldn't hurt to phone the doctor. Luckily the doctor agreed to see us in yesterday's clinic. Adam wasn't able to get out of work so I packed all the gear (the buggy, in case Aaron wanted to nap, the carrier in case he wanted to have a look around, the variety of toys to keep him entertained, the nappy changing kit, etc, etc) and set off to the station hoping we'd find a nice person to help me get the buggy up and down the two flights of stairs it takes to get to the platform.
We made it to Moorfields without a hitch and I managed to keep Aaron entertained while we waited but then I noticed we were both warm and wet. Naturally we had to go change our clothes right when we were due to see the doc but at least we didn't have to go into our appointment covered in wee (just covered in spitup as it were)!
The doctor checked Aaron's eyes while I sang Wind the Bobbin Up (!) and confirmed that the surgery is still successful and the pressure is down. The watery eyes are from the stitches dissolving and the red eye is party to this also - the gunky bit is mucous stuck to the end of a stitch. Yum.
I felt relieved to say the least. I was convinced the surgery had failed and poor Aaron was going to start losing his vision but thankfully he's fine! I will try and relax a bit knowing he's in good hands and in the meantime will stop trying to Google '360 degree trabeculotomy success stories'...I think the Internet isn't helping increase my sense of positivity which is ridiculous since the stories I'm looking at are about regular trabeculotomies and not 360 degree ones. I still can't find anything specific to our surgery that isn't a medical study requiring a statistics textbook to help decipher but maybe that's for the best. Perhaps we are writing history ourselves when it comes to treatment for congenital glaucoma...?
Showing posts with label trabeculectomy. Show all posts
Showing posts with label trabeculectomy. Show all posts
Friday, 11 November 2016
Thursday, 27 October 2016
Good checkup at Moorfields today
We had a really positive meeting with our doctor at Moorfields today regarding the status of Aaron's congenital glaucoma! Adam and I had thought the cloudiness was clearing in Aaron's corneas but were worried we were being too optimistic; however, the doctor confirmed our diagnosis. We couldn't have asked for better news at this stage, super happy with these results after the roller coaster of emotions the past week.
We must have looked like something the cat dragged in when we turned up for our appointment at the Richard Desmond Children's Eye Centre, as Aaron was up and down all night last night. Not sure what was keeping him up but Adam and I had to pull every trick in the book to get Aaron back to sleep, including Ewan the Sheep (had to dig him out of the closet) and the bloody hairdryer as well - three times (I'm guessing we won't be getting a Christmas card from the people next door this year). He kept trying to rub his eyes so I think it's fair to say that us pinning him down didn't exactly soothe him back to sleep.
Our visit to Moorfields started with a new gentleman calling for us instead of our usual doctor but he was quick to explain that he was working closely with our doctor and would be part of Team Aaron - the more the merrier! He knew everything about our case and went through all of Aaron's prescriptions with us, answered questions and had a look at Aaron's eyes (Aaron was peering out from the folds of my shirt as he'd just woken from a nap but was very keen to be part of the action). The new doctor liked what he saw in terms of the cloudiness being reduced and was kind enough to take a special look at Aaron's left eye, which we managed to get pears in during breakfast this morning and I was sure it was going to blind him worse than the glaucoma (he's fine).
The new doctor also told us why Aaron's probably rubbing his eyes - the sutures are starting to dissolve. It's totally normal and there are enough sutures that restless babies can't undo hours of surgical precision with one fell swoop.
Our usual doctor joined us in the room at that point and echoed the happy diagnosis, the corneas were clearing which means the 360 degree trabeculectomy is working! He explained that our next steps for treating the congenital glaucoma would include weaning Aaron from the drops he is on (an antibiotic and a pressure reducer) followed by an in-depth eye exam, which must be done under general anaesthesia, where they will look at Aaron's pupils, optic nerve, the healing from the sutures and the pressure in the eye.
If the pressure is down once the drops have been discontinued, we will then see the orthoptist about any necessary patching, glasses, etc.
If the pressure is still high, they will put Aaron back on some form of pressure-reducing drops and wait until he's a bit bigger before performing another surgery that will involve a tube implant to help with the drainage. The doctor told us that if the pressure is high and the optic nerve is in good shape, we'll wait a bit longer as it's better if Aaron has a chance to grow before getting the implant. However, if the optic nerve is not so great they will do the surgery quicker.
It's worth noting that in no case will we be riding off into the sunset with no further visits regardless of the December outcome (I sort of knew that but I asked anyway just in case). Aaron will need monitored for a long time (forever?) to make sure the pressure stays down.
All of the news today was positive but we were particularly excited to hear that we don't have to pin Aaron down every time he rubs his eyes. Here's to hopefully a good night's sleep!
We must have looked like something the cat dragged in when we turned up for our appointment at the Richard Desmond Children's Eye Centre, as Aaron was up and down all night last night. Not sure what was keeping him up but Adam and I had to pull every trick in the book to get Aaron back to sleep, including Ewan the Sheep (had to dig him out of the closet) and the bloody hairdryer as well - three times (I'm guessing we won't be getting a Christmas card from the people next door this year). He kept trying to rub his eyes so I think it's fair to say that us pinning him down didn't exactly soothe him back to sleep.
Our visit to Moorfields started with a new gentleman calling for us instead of our usual doctor but he was quick to explain that he was working closely with our doctor and would be part of Team Aaron - the more the merrier! He knew everything about our case and went through all of Aaron's prescriptions with us, answered questions and had a look at Aaron's eyes (Aaron was peering out from the folds of my shirt as he'd just woken from a nap but was very keen to be part of the action). The new doctor liked what he saw in terms of the cloudiness being reduced and was kind enough to take a special look at Aaron's left eye, which we managed to get pears in during breakfast this morning and I was sure it was going to blind him worse than the glaucoma (he's fine).
The new doctor also told us why Aaron's probably rubbing his eyes - the sutures are starting to dissolve. It's totally normal and there are enough sutures that restless babies can't undo hours of surgical precision with one fell swoop.
Our usual doctor joined us in the room at that point and echoed the happy diagnosis, the corneas were clearing which means the 360 degree trabeculectomy is working! He explained that our next steps for treating the congenital glaucoma would include weaning Aaron from the drops he is on (an antibiotic and a pressure reducer) followed by an in-depth eye exam, which must be done under general anaesthesia, where they will look at Aaron's pupils, optic nerve, the healing from the sutures and the pressure in the eye.
If the pressure is down once the drops have been discontinued, we will then see the orthoptist about any necessary patching, glasses, etc.
If the pressure is still high, they will put Aaron back on some form of pressure-reducing drops and wait until he's a bit bigger before performing another surgery that will involve a tube implant to help with the drainage. The doctor told us that if the pressure is high and the optic nerve is in good shape, we'll wait a bit longer as it's better if Aaron has a chance to grow before getting the implant. However, if the optic nerve is not so great they will do the surgery quicker.
It's worth noting that in no case will we be riding off into the sunset with no further visits regardless of the December outcome (I sort of knew that but I asked anyway just in case). Aaron will need monitored for a long time (forever?) to make sure the pressure stays down.
All of the news today was positive but we were particularly excited to hear that we don't have to pin Aaron down every time he rubs his eyes. Here's to hopefully a good night's sleep!
Wednesday, 26 October 2016
Improvement?!
Our little patient's red eyes are starting to look better 4-5 days on from the 360 degree trabeculectomy. Over the weekend Aaron's eyes were dark, blood red and now he looks a bit like he's been swimming in chlorine without goggles. In his irises you can see little flecks in his eyes like most people have, hopefully because the cloudiness in his corneas is clearing? (Our unofficial observations, the poor kid must be sick of us staring at him like a specimen)
The ibuprofen seems to have really helped as he was engaged in play most of yesterday, crawling backwards, chewing and just watching the world around him. Lots of squeals and giggles towards evening and we managed to get him down at 7 pm in his cot, so almost his normal bedtime routine. No bath as we'd had to give him one in the morning (strawberries for breakfast ended up everywhere) but he got his usual songs and stories, which knocked him out till midnight and then he fed and slept until 05:30!!
A banner night for Aaron on any given day, let alone less than a week after major surgery. I don't know if it's been his congenital glaucoma that's made him a sometimes night owl so far or it's just his nature but either way we were ecstatic to get more than two hours of consecutive sleep. Happy days. :)
The ibuprofen seems to have really helped as he was engaged in play most of yesterday, crawling backwards, chewing and just watching the world around him. Lots of squeals and giggles towards evening and we managed to get him down at 7 pm in his cot, so almost his normal bedtime routine. No bath as we'd had to give him one in the morning (strawberries for breakfast ended up everywhere) but he got his usual songs and stories, which knocked him out till midnight and then he fed and slept until 05:30!!
A banner night for Aaron on any given day, let alone less than a week after major surgery. I don't know if it's been his congenital glaucoma that's made him a sometimes night owl so far or it's just his nature but either way we were ecstatic to get more than two hours of consecutive sleep. Happy days. :)
Monday, 24 October 2016
Up and down
Another long night here with Aaron waking every 1-1.5 hours. His cries sound upset vs grizzly so for the time being we have stopped any sleep training and are picking him up when he cries.
This morning around 7:30 the cries turned to little coos and I was excited to see a big smile when I lifted him over my head. However, he kept his eyes snapped shut tight like he used to do. I changed him and brought him downstairs for both sets of drops, which he yelled through. He kept yelling after the drops so I put him in the jumperoo, where he played for a few minutes with his eyes partially open. He didn't seem sensitive to the light, it just looked like his eyes were sore and he was protective of them.
Playtime was short lived, he took an impromptu nap that ended as quickly as it started and then was ready for business! He spent an hour or so on his foam mat playing with his toys and creeping around like a little lizard. His eyes were open - the redness is going down just a bit - and he seemed alert and happy. So nice to see him happy and seeming comfortable!
He was back in upset mode by mid morning when a lady from Moorfields called to check on him - she could hear him down the phone. She wanted to know how we were managing Aaron's pain and recommended adding ibuprofen alongside the paracetamol we were already giving him. She said he would be suffering for potentially 7-10 days post surgery given the magnitude of the operation and that he had both eyes done. It seems his behaviour on Saturday where he was so chilled and happy most of the day was a fluke - maybe he was over excited with his new vision, who knows, but it coloured Adam's and my expectations and we were feeling thrown by the unhappy camper we saw on Sunday. It was good to hear Aaron was doing ok although it's not great to know he's suffering.
Lots of naps today and another good stretch of playtime with his eyes open, and of course I'm following the advice on his pain meds. Fingers crossed he continues to improve and that we have nipped this congenital glaucoma in the bud. We go back to the clinic at Moorfields Richard Desmond Children's Eye Centre on Thursday, really hoping for good news in terms of the eye pressure being down, cloudiness disappearing and overall healthy healing of Aaron's precious eyes.
This morning around 7:30 the cries turned to little coos and I was excited to see a big smile when I lifted him over my head. However, he kept his eyes snapped shut tight like he used to do. I changed him and brought him downstairs for both sets of drops, which he yelled through. He kept yelling after the drops so I put him in the jumperoo, where he played for a few minutes with his eyes partially open. He didn't seem sensitive to the light, it just looked like his eyes were sore and he was protective of them.
Playtime was short lived, he took an impromptu nap that ended as quickly as it started and then was ready for business! He spent an hour or so on his foam mat playing with his toys and creeping around like a little lizard. His eyes were open - the redness is going down just a bit - and he seemed alert and happy. So nice to see him happy and seeming comfortable!
He was back in upset mode by mid morning when a lady from Moorfields called to check on him - she could hear him down the phone. She wanted to know how we were managing Aaron's pain and recommended adding ibuprofen alongside the paracetamol we were already giving him. She said he would be suffering for potentially 7-10 days post surgery given the magnitude of the operation and that he had both eyes done. It seems his behaviour on Saturday where he was so chilled and happy most of the day was a fluke - maybe he was over excited with his new vision, who knows, but it coloured Adam's and my expectations and we were feeling thrown by the unhappy camper we saw on Sunday. It was good to hear Aaron was doing ok although it's not great to know he's suffering.
Lots of naps today and another good stretch of playtime with his eyes open, and of course I'm following the advice on his pain meds. Fingers crossed he continues to improve and that we have nipped this congenital glaucoma in the bud. We go back to the clinic at Moorfields Richard Desmond Children's Eye Centre on Thursday, really hoping for good news in terms of the eye pressure being down, cloudiness disappearing and overall healthy healing of Aaron's precious eyes.
Monday, 17 October 2016
Happy holding pattern
Not much to report at the minute as we are waiting for the appointment at Moorfields on Thursday to find out next steps regarding Aaron's congenital glaucoma treatment.
On the one hand it's hard to wait - we want to know what the future holds for our little man. On the other hand, we are enjoying these few days with Aaron as we're anticipating at the very least he may be kind of uncomfortable in a week from now. We don't know exactly what to expect after Thursday's appointment, only that we've been asked to plan to stay overnight as surgery on Friday is very likely.
We don't know what the surgery would be but from the bit of research I've done it could be a goniotomy or a trabeculectomy. We received a hard copy of Aaron's referral letter from the PRUH to Moorfields and it has his corneal diameters measuring at 11mm (left) and 12mm (right) so based on that alone (and bearing in mind I am not an opthamologist and one week ago had never even heard of congenital glaucoma) it looks probable that it would be a goniotomy.
But who knows! Given the surprise of this diagnosis (as Clark Griswold once said, if I woke up tomorrow with my head sewn to the carpet I wouldn't be more surprised than I am right now) anything goes I suppose. We are going with the flow for now, ignorance is bliss and we'll enjoy our happy holding pattern.
On the one hand it's hard to wait - we want to know what the future holds for our little man. On the other hand, we are enjoying these few days with Aaron as we're anticipating at the very least he may be kind of uncomfortable in a week from now. We don't know exactly what to expect after Thursday's appointment, only that we've been asked to plan to stay overnight as surgery on Friday is very likely.
We don't know what the surgery would be but from the bit of research I've done it could be a goniotomy or a trabeculectomy. We received a hard copy of Aaron's referral letter from the PRUH to Moorfields and it has his corneal diameters measuring at 11mm (left) and 12mm (right) so based on that alone (and bearing in mind I am not an opthamologist and one week ago had never even heard of congenital glaucoma) it looks probable that it would be a goniotomy.
But who knows! Given the surprise of this diagnosis (as Clark Griswold once said, if I woke up tomorrow with my head sewn to the carpet I wouldn't be more surprised than I am right now) anything goes I suppose. We are going with the flow for now, ignorance is bliss and we'll enjoy our happy holding pattern.
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