Yes. Had.
He's lost it already.
Where?
We don't know. It's even possible the thing is still in his eye and we just can't find it.
Why does he have one, you ask?
His left eye is now aphakic, that is, missing the lens. You may recall it was removed during the retina surgery in December 2010. The only way to reasonably correct aphakia is via an intraocular lens replacement or by wearing a specially designed contact. Isaak is too young for a new lens due to his still growing eye and an increased risk of scar tissue. So they gave him an extended wear (7 day) contact.
And he lost it.
Before 24 hours were even up.
He had it when he went to bed, but it was gone this morning. We guess he just rubbed his eye randomly and popped it out. We looked in the bed, in the blankets, in diapers and on the floor all around. Did he eat it? Did he throw it out of the crib somehow? Or, it it really still in the eye somewhere? His eye isn't tearing and he doesn't seem to be rubbing it a lot but does seem kind of cranky and clingy today, according to Mom.
Did I mention these things cost $260 a pop. For ONE contact lens.
Clearly he will need to be trained.
Outside of the saga of the contact lens, his followup yesterday was very good. The main reason for his visit was to make sure the pressure was acceptable in the left eye after being off Azopt for 36 hours. It was in excess of 40 just 3 weeks ago. Yesterday, it was 9 (under 20 is normal).
Penny also had a 6 month checkup and here eyes look fantastic. No need for an exam under anesthesia for her. The only issue she has to track is very very mild veiling at the outer edges of her retinas. Leftover artifacts from the RoP. She'll be seen in a year. Way to go little girl.
Showing posts with label Duke. Show all posts
Showing posts with label Duke. Show all posts
Tuesday, April 12, 2011
Saturday, April 9, 2011
Isaak Eyes and Frustrating G-Tube Stomas
Little guy went to Duke Eye Center on Friday for an exam under anesthesia (EUA), and the news was better than expected. I'm not sure we've been able to utter that phrase in relation to Isaak's vision in quite awhile. We were very worried about the possiblity of glaucoma surgery due to elevated eye pressure at his last checkup. After 3 weeks of drops, his pressures were well into the normal range, so no surgery was necessary. We keep him off the drops this weekend, and they will re-measure on Monday to see if he needs them or not.
In other good news, the retinal fold is beginning to flatten and the macula is actually moving back towards the appropriate location. Now, this doesn't mean that lost vision will be returning, but it does mean that the danger of additional vision loss has abated (somewhat, for now). Scar tissue is still present, but doesn't appear to be expanding. This is important as the scarring is what caused much of the tension on the retina and created the fold.
There are small fatty deposits on the retina, called exudates, that are likely a result of the massive hemorrhage Isaak experienced last July and continued bleeding afterward. This hemorrhage was the proximal cause of many of his vision complications and the advanced RoP. Nothing that isn't experimental and potentially damaging can be done about them, so we'll just be hoping they don't grow any more.
He goes in Monday for a followup to the exam and to be fitted for his contact lens. If you recall, the surgeons were forced to remove the lens from his left eye to carry out the retina surgery. This contact will help the eye regain some it's ability to focus.
His right still looks perfect. Thank goodness for small gifts.
Penny (yes, she is still around ;) Also has a date with Duke on Monday. It's been a few months since she had her last eye exam, and we want to make sure nothing untoward has occurred since then. If her eyes still look great, she'll just be on a yearly exam schedule.
Isaak will have another EUA in late summer and may very well have one annually for a while.
In news of a more frustrating nature, Isaak's g-tube site has remained stubbornly open. We've been dealing with a leaking, hissing tummy for two weeks now. For some reason, UNC did not schedule an OR date in case the stoma did not close and so it will be Thursday before Isaak finally has the procedure to do so. 3-4 outfit changes per day plus innumerable quantities of pads, gauze, tape and protectant ointment have been consumed and quite a bit more will be prior to Thursday.
We only hope there hasn't been tissue damage around the site from stomach contents leaking out.
Thursday, March 31, 2011
Ding-Dong, the G-Tube's Gone!
Yes. Yes. You aren't seeing things - this *is* the third post in March.
Oh, you meant the headline? (Of course you did!)
This was a potentially life-altering week for Isaak. On Monday, Bekka took him to UNC for what we thought was going to be a pre-op appointment with the surgeon to schedule removal of the g-tube and closure of the stoma. Previously, there was evidence that the gastric mucosa (stomach lining, basically) was growing up and out of the stoma site. On this visit, they decided it wasn't and went ahead and pulled the tube!
This was/is very exciting.
It's also very messy.
You see, the closure process basically involves letting the stoma close on its own, much like an earring hole. During this process, Isaak still has to eat and drink...and this has a disturbingly frequent tendency to result in a mess. Daddy came up with a method to help control the mess - maxi pads taped to his stomach - but it's by no means 100% effective. We still get milk geysers when changing the dressing once in awhile...
The stoma site is slowly closing and already looks much better. It is supposed to close in 2-3 weeks (!?!). Sometimes we think doctors don't quite know what we have to deal with at home...
In other news, we had a visit at Duke Eye Center last week. This visit was not nearly as exciting as the UNC visit because the news was not all good. Isaak's right eye still looks great, but the left has developed new issues. There is a bit of new bleeding and also some sort of lipid deposits around the macula. To add to the concern, the pressure is elevated in the eye whereas it had previously been fine. Sooooo....we have another appointment at Duke on April 11 to reevaluate the pressure levels and sometime soon after Isaak will have yet another exam under anesthesia. It's possible (possibly even likely) that Isaak will require further surgical intervention in the eye. We certainly hope not, but we'll go with it day by day.
In the meantime, this is the first time we've had a cordless little boy since Ollie was 7 months old. This is significant for us on so many levels. It really hasn't fully sunk in yet and probably won't until we no longer have to have bandages/maxi-pads on his tummy.
There is so much more to discuss regarding their development and new-found ability to say dadadadadadadadadee, but that will have to wait for another post - perhaps the post that will have the epic video of attempted green bean feeding. (Hint: it did not go well)
I can leave you with a few numbers this evening: Both kids are basically 28 inches long. Penny weighs a tick over 21lbs and Isaak a little over 20. Such a long, long way from 1lb 7 and 1lb 11 and under a foot long.
What is amazing is how deep they both are into the "normal" baby growth curve. Penny is sitting right at the 50th percentile while Isaak is around the 25th. If you adjust for their prematurity, Penny is over 90% and Isaak over 50. Amazing little guys.
Oh, you meant the headline? (Of course you did!)
This was a potentially life-altering week for Isaak. On Monday, Bekka took him to UNC for what we thought was going to be a pre-op appointment with the surgeon to schedule removal of the g-tube and closure of the stoma. Previously, there was evidence that the gastric mucosa (stomach lining, basically) was growing up and out of the stoma site. On this visit, they decided it wasn't and went ahead and pulled the tube!
This was/is very exciting.
It's also very messy.
You see, the closure process basically involves letting the stoma close on its own, much like an earring hole. During this process, Isaak still has to eat and drink...and this has a disturbingly frequent tendency to result in a mess. Daddy came up with a method to help control the mess - maxi pads taped to his stomach - but it's by no means 100% effective. We still get milk geysers when changing the dressing once in awhile...
The stoma site is slowly closing and already looks much better. It is supposed to close in 2-3 weeks (!?!). Sometimes we think doctors don't quite know what we have to deal with at home...
In other news, we had a visit at Duke Eye Center last week. This visit was not nearly as exciting as the UNC visit because the news was not all good. Isaak's right eye still looks great, but the left has developed new issues. There is a bit of new bleeding and also some sort of lipid deposits around the macula. To add to the concern, the pressure is elevated in the eye whereas it had previously been fine. Sooooo....we have another appointment at Duke on April 11 to reevaluate the pressure levels and sometime soon after Isaak will have yet another exam under anesthesia. It's possible (possibly even likely) that Isaak will require further surgical intervention in the eye. We certainly hope not, but we'll go with it day by day.
In the meantime, this is the first time we've had a cordless little boy since Ollie was 7 months old. This is significant for us on so many levels. It really hasn't fully sunk in yet and probably won't until we no longer have to have bandages/maxi-pads on his tummy.
There is so much more to discuss regarding their development and new-found ability to say dadadadadadadadadee, but that will have to wait for another post - perhaps the post that will have the epic video of attempted green bean feeding. (Hint: it did not go well)
I can leave you with a few numbers this evening: Both kids are basically 28 inches long. Penny weighs a tick over 21lbs and Isaak a little over 20. Such a long, long way from 1lb 7 and 1lb 11 and under a foot long.
What is amazing is how deep they both are into the "normal" baby growth curve. Penny is sitting right at the 50th percentile while Isaak is around the 25th. If you adjust for their prematurity, Penny is over 90% and Isaak over 50. Amazing little guys.
Friday, December 17, 2010
Eye Surgery, Part 2
UPDATE: Neil here - Isaak came through surgery fine and Bekka is with him in recovery. (I'm at home with Penny, long story).
So Isaak had about as much done as one could. It was a mess in his left eye. Blood vessels were dragging nerves around and growing in strange ways and there was quite a lot of scar tissue. Something had to be done or complete detachment was highly likely.
So what did they do?
Little guy has certainly had a challenging time of it in his short life. RoP rarely gets to this advanced stage these days, but in his case, too much hidden damage appears to have led to this situation. This was particularly frustrating as his eye appeared to have stabilized several time before suddenly worsening.
He's a trooper though and just keeps smiling through it all.
--------------------------------------
Isaak was taken back to the OR at 7:30 this morning. (We've been here since 6am, which meant I had to get the poor little guy out of bed at 5am.) He spent his time talking, smiling and flirting while we waited.
The retinal specialist came out to talk with me a few minutes ago. She will also be doing some additional laser ablation on Isaak's right eye as there is still some abnormal blood vessel growth. Her main concern with his left eye is that the tugging on the retina caused by the fibrous tissue could cause a hole to tear in the retina. If that happened, the vitreous fluid could get behind the retina and cause a full detachment. Full detachment would mean no functional vision in that eye.
I'll post more updates as I have time and more info.
So Isaak had about as much done as one could. It was a mess in his left eye. Blood vessels were dragging nerves around and growing in strange ways and there was quite a lot of scar tissue. Something had to be done or complete detachment was highly likely.
So what did they do?
- Removed the lens (he will wear a contact lens from here forward)
- Cut most of the scar and fibrous tissue pulling on his retina. They were not able to get to all of it, but were able to to get to most.
- Placed a scleral buckle around the eye. This helps to relieve tension on the retina. It might be permanent but will be in place for years in any case. It will have to be periodically loosened to allow for growth.
- Performed more laser surgery in his right eye. A couple of areas had started showing abnormal blood vessel growth. Unfortunately, RoP is a lifelong disease and we will have to stay on top of this. Overall his right eye is still doing really well.
Little guy has certainly had a challenging time of it in his short life. RoP rarely gets to this advanced stage these days, but in his case, too much hidden damage appears to have led to this situation. This was particularly frustrating as his eye appeared to have stabilized several time before suddenly worsening.
He's a trooper though and just keeps smiling through it all.
--------------------------------------
Isaak was taken back to the OR at 7:30 this morning. (We've been here since 6am, which meant I had to get the poor little guy out of bed at 5am.) He spent his time talking, smiling and flirting while we waited.
The retinal specialist came out to talk with me a few minutes ago. She will also be doing some additional laser ablation on Isaak's right eye as there is still some abnormal blood vessel growth. Her main concern with his left eye is that the tugging on the retina caused by the fibrous tissue could cause a hole to tear in the retina. If that happened, the vitreous fluid could get behind the retina and cause a full detachment. Full detachment would mean no functional vision in that eye.
I'll post more updates as I have time and more info.
Sunday, November 21, 2010
Babies and Stuff
OK, so to be fair, that is almost always the topic of entries on this blog. If I'm about to drop a treatise on the current state of Sino-Russian relations and their impact on the international mineral trade, I'll be sure to let you know so you can avoid reading it. (Except Roy, he probably would be MORE likely to read that ;)
We will have VERY cute pictures and video up later this month. Both of these little guys are changing so much, we often wake up with different babies than the ones we went to bed with. This week they have moved to a whole new level of personal interaction. More smiles, more giggles, better following of objects and people. Over the last couple of days they have started reaching for and grabbing objects consistently. It's really amazing to watch. Penny is a little ahead from a head control and body control point of view, but they are both doing so well.
Not much (thankfully) to report on the medical front. Isaak had his followup with the eye docs at Duke last week and everything looked pretty stable. His right eye is "fantastic" to quote one of the docs and his left looks about the same (it's NOT going to get better, we just don't want it to get worse). There is some concern as there is still blood in the eye but they aren't sure if it's old blood from the big hemorrhage this summer or if it's fresh. We have another visit scheduled in December when he'll be examined under mild anesthesia so they can get a more detailed look. We should also be hearing from the fine folks at the Governor Morehead school so we make sure we are doing all we can to help him adapt to his peculiar vision issues.
Let's see - anything else...Oh yes, Isaak now weighs well over 12 lbs. This past week saw a weight of 5.57 kilos or 12lb 4.5oz. He gained about 12 oz in one week! We would not be surprised if he tops 13 this week. Penny was 13lbs almost 3 weeks ago and we will try to weigh her this week. It would not be shocking to see her in excess of 14lbs at this point. They are such amazing little guys and Isaak's steady weight gain points to really good adaptations occurring in his GI tract.
Finally, just a reminder/request to help out victims of genetic disease. Alternating Hemiplegia of Childhood is a disease so poorly understood that they don't really even understand what causes it. Everyone out there has been so fantastic voting in the Pepsi Refresh campaign for SMA causes, we hope you feel comfortable voting for AHC in this current cycle. Click on the link below and you vote via facebook login, create an account or send text messages. AHC is currently in 3rd place and needs your help to get to #2 (a money slot). Thanks so much!
http://www.refresheverything.com/cureahc
We will have VERY cute pictures and video up later this month. Both of these little guys are changing so much, we often wake up with different babies than the ones we went to bed with. This week they have moved to a whole new level of personal interaction. More smiles, more giggles, better following of objects and people. Over the last couple of days they have started reaching for and grabbing objects consistently. It's really amazing to watch. Penny is a little ahead from a head control and body control point of view, but they are both doing so well.
Not much (thankfully) to report on the medical front. Isaak had his followup with the eye docs at Duke last week and everything looked pretty stable. His right eye is "fantastic" to quote one of the docs and his left looks about the same (it's NOT going to get better, we just don't want it to get worse). There is some concern as there is still blood in the eye but they aren't sure if it's old blood from the big hemorrhage this summer or if it's fresh. We have another visit scheduled in December when he'll be examined under mild anesthesia so they can get a more detailed look. We should also be hearing from the fine folks at the Governor Morehead school so we make sure we are doing all we can to help him adapt to his peculiar vision issues.
Let's see - anything else...Oh yes, Isaak now weighs well over 12 lbs. This past week saw a weight of 5.57 kilos or 12lb 4.5oz. He gained about 12 oz in one week! We would not be surprised if he tops 13 this week. Penny was 13lbs almost 3 weeks ago and we will try to weigh her this week. It would not be shocking to see her in excess of 14lbs at this point. They are such amazing little guys and Isaak's steady weight gain points to really good adaptations occurring in his GI tract.
Finally, just a reminder/request to help out victims of genetic disease. Alternating Hemiplegia of Childhood is a disease so poorly understood that they don't really even understand what causes it. Everyone out there has been so fantastic voting in the Pepsi Refresh campaign for SMA causes, we hope you feel comfortable voting for AHC in this current cycle. Click on the link below and you vote via facebook login, create an account or send text messages. AHC is currently in 3rd place and needs your help to get to #2 (a money slot). Thanks so much!
http://www.refresheverything.com/cureahc
Tuesday, October 26, 2010
Isaak's Eye Follow-up and other Weighty Matters
Bekka will have more to follow with details on Isaak's vision and the like, but I thought I'd drop a quick note.
His exam with Dr. Freedman at Duke went really well. The right eye responded to the laser treatment and the vascular growth appears to be normalizing. The left eye did not show any additional retinal detachment and the couple of spots that were hit with the laser also looked like they were doing well. She is optimistic that the left eye will stabilize and there will be minimal or no further detachment. This is not guaranteed of course. Anytime you get retinal detachment, the situation can worsen.
One bit of potentially positive news regards his field of vision. Because his brain is still learning how to see, it should adapt well to the available vision so that it uses the right eye for the central image and merges the left eye's partial vision in a fairly natural way. An adult would probably perceive an actual blank spot in their vision.
We also weighed both kids today. Isaak clocked in at 10lbs and just shy of 6 ounces. That's pretty dang good for his situation and he gained about 5 ounces since last week. Penny, well, that is another story altogether. Our little piglet is up to 12lbs 1oz. It's hard to believe she was 1lb 7oz when she was born and barely 5 when we brought her home. Our little girl is growing up!
His exam with Dr. Freedman at Duke went really well. The right eye responded to the laser treatment and the vascular growth appears to be normalizing. The left eye did not show any additional retinal detachment and the couple of spots that were hit with the laser also looked like they were doing well. She is optimistic that the left eye will stabilize and there will be minimal or no further detachment. This is not guaranteed of course. Anytime you get retinal detachment, the situation can worsen.
One bit of potentially positive news regards his field of vision. Because his brain is still learning how to see, it should adapt well to the available vision so that it uses the right eye for the central image and merges the left eye's partial vision in a fairly natural way. An adult would probably perceive an actual blank spot in their vision.
We also weighed both kids today. Isaak clocked in at 10lbs and just shy of 6 ounces. That's pretty dang good for his situation and he gained about 5 ounces since last week. Penny, well, that is another story altogether. Our little piglet is up to 12lbs 1oz. It's hard to believe she was 1lb 7oz when she was born and barely 5 when we brought her home. Our little girl is growing up!
Saturday, October 23, 2010
Just in Case You Were Wondering...
...Isaak is, in fact, at home and doing well. His stay on the pediatric floor at Duke was just a formality and he was discharged after one night with no fanfare (though he did make friends with the nurses).
We really won't have an update on the situation with his eyes until Monday morning. He has a follow up appointment at Duke Eye Center with the surgeons.
Otherwise, everybody is doing pretty well. The last official weights we had on these two, Penny was just shy of 11 and 1/2 pounds (I bet she is closer to 12 and 1/2 now) and Isaak was just a tick over 10. So "Little Bit", as I had taken to calling her, really isn't anymore. She appears to be taking full advantage of that intact digestive tract she is sporting to pack on the pounds and inches. Isaak is jealous. Honestly though, if we didn't have Penny to compare him to, I think his growth would look great to us and according to the doctors, his growth really is quite good given his disadvantages.
He had a visit with the GI Docs, GI Surgeons and Speech Therapist at UNC last Wednesday and everyone was pleased with how well he's doing. Amazed really. The surgeons increased the size of his G-tube (since he was a tiny tyke that didn't even weigh 5 lbs when he had his reanastomosis) and were otherwise happy with the way everything looked.
The GI docs have been very happy with his feeding progress and he's now getting 5, 45ml (1.5oz) bottles a day. This is quite an increase from the 3x10ml he was getting when he came home. He's still getting TPN via his Broviac but there is hope we can start tapering that down soon since he's doing so well with his g-tube and oral feeds. They have decreased the amount of dextrose in his TPN and that, combined with the oral feeds, has been great for his liver. His total bilirubin is down to 5.3 compared to 11.6 not long after he came home from the hospital. Remarkably, he barely even looks jaundiced now. Ideally, the bili level would be below 1.2 mg/DL, but we'll take what we are getting now, yes sir!
The speech therapist was making sure he was doing OK with his feeds. When we first began increasing bottle feeds, he was having some trouble developing suction. Apparently, that was just due to inexperience and he is now doing a great job and they did not have any concerns.
I took my first extended trip out of town since last spring...and nothing terrible happened. Things like that really ride in the back of your mind. Grandma Karla is in town too, so that made it a little easier on everyone. I wouldn't have taken off if Bekka was by herself that entire time.
Look for an update on Isaak's eyes later this week and new photos by the end of the month. I'm going to start uploading photos about once a month just so I'm not chasing my tail all the time trying to keep up.
We really won't have an update on the situation with his eyes until Monday morning. He has a follow up appointment at Duke Eye Center with the surgeons.
Otherwise, everybody is doing pretty well. The last official weights we had on these two, Penny was just shy of 11 and 1/2 pounds (I bet she is closer to 12 and 1/2 now) and Isaak was just a tick over 10. So "Little Bit", as I had taken to calling her, really isn't anymore. She appears to be taking full advantage of that intact digestive tract she is sporting to pack on the pounds and inches. Isaak is jealous. Honestly though, if we didn't have Penny to compare him to, I think his growth would look great to us and according to the doctors, his growth really is quite good given his disadvantages.
He had a visit with the GI Docs, GI Surgeons and Speech Therapist at UNC last Wednesday and everyone was pleased with how well he's doing. Amazed really. The surgeons increased the size of his G-tube (since he was a tiny tyke that didn't even weigh 5 lbs when he had his reanastomosis) and were otherwise happy with the way everything looked.
The GI docs have been very happy with his feeding progress and he's now getting 5, 45ml (1.5oz) bottles a day. This is quite an increase from the 3x10ml he was getting when he came home. He's still getting TPN via his Broviac but there is hope we can start tapering that down soon since he's doing so well with his g-tube and oral feeds. They have decreased the amount of dextrose in his TPN and that, combined with the oral feeds, has been great for his liver. His total bilirubin is down to 5.3 compared to 11.6 not long after he came home from the hospital. Remarkably, he barely even looks jaundiced now. Ideally, the bili level would be below 1.2 mg/DL, but we'll take what we are getting now, yes sir!
The speech therapist was making sure he was doing OK with his feeds. When we first began increasing bottle feeds, he was having some trouble developing suction. Apparently, that was just due to inexperience and he is now doing a great job and they did not have any concerns.
I took my first extended trip out of town since last spring...and nothing terrible happened. Things like that really ride in the back of your mind. Grandma Karla is in town too, so that made it a little easier on everyone. I wouldn't have taken off if Bekka was by herself that entire time.
Look for an update on Isaak's eyes later this week and new photos by the end of the month. I'm going to start uploading photos about once a month just so I'm not chasing my tail all the time trying to keep up.
Wednesday, October 13, 2010
Isaak's Eyeballs Open Post
Good morning!
We'll keep this open with occasional updates today. Right now (8:35), we are finished with preop and waiting for them to take Isaak back. He's currently asleep in Bekka's arms so I'd classify that as doing OK ;)
To recap: They will be conducting a detailed exam of both eyes while he is under anesthesia. More than likely, they will perform laser ablation surgery on his right eye to help with the RoP issues and to direct retina development into a more normal pattern. Based on the exam, they may also laser areas in the left eye in the hopes of stabilizing the situation and salvaging as much vision as possible. We'll have a much better idea where we stand.
Update (10:00am): We just met with the retinal specialist. The news confirms the pre-op diagnoses. The right eye looks healthy, if a bit underdeveloped for his age. The surgeon is in the process of lasering that eye to dry up a couple of small bleeds to prevent them from expanding and keep his right eye on track.
The left was, if anything, a bit worse than anticipated. They were able to conduct a much more detailed scan of the eye which showed how large the fold was and indicated that there is definite retinal detachment at the center andin a line across the eye back towards the nose. (Ok, had that backwards, it's actually towards the outside of the eye. He is going to have decent outer vision because the inside of the eye is what looks out.)
This is apparently classic stage 4-B RoP. Most of the periphery of the retina is attached, and he should have good outside peripheral vision. The doctor indicated that were this an older person who had developed the same problem, they would almost certainly have performed surgery. In the case of Isaak, this has been going on long enough that he has not developed the neural pathways to learn to see, and the risk associated with cutting the eye open and possibly having to take out the lens is not worth it. We do not know for sure if they are going to laser anything on that side.
Interestingly, he will have to have glasses as he gets mobile mostly to protect his very valuable right eye.We'll have more after meeting with the surgeon.
Update (11:00am): Just met with the surgeon. Everything went swimmingly. His right eye looked good and she hit a few spots of concern (but nothing dire) with the laser. She was very happy with the vascular development in the left eye outside of the folded area and only hit a couple of spots there. She confirmed that both she and the retinal specialist concurred that surgery on the left eye carried far more risk than benefit, especially considering how well attached and developed the unaffected retina is. We will see her again a week from Monday for a follow-up. In the meantime, we apply two different types of eye drops for the next 5 days. That is pretty much it for post-op care.
Bekka is back in recovery with Isaak and I'm waiting for them to move to a normal post-op spot so I can join. After that, we'll wait while they find us a spot in the main hospital tower and go from there. His stay in the hospital is strictly to observe for any lingering effects of anesthesia, from an eye standpoint, he is good to go.
Update (Afternoon): Little guy is happily ensconced in a room on the 5th floor at Duke. Once he was awake, you've never seen a baby so eager to get a bottle of milk! Poor guy had not had formula or g-tube feeds since midnight, only some pedialyte overnight (just like grownups and anesthesia, he couldn't eat). This afternoon, he's mostly been napping. I'm sure the stress of the surgery plus the lingering effects of being put under have zapped him but good.
Assuming no issues, we'll be outta here first thing in the morning.
We'll keep this open with occasional updates today. Right now (8:35), we are finished with preop and waiting for them to take Isaak back. He's currently asleep in Bekka's arms so I'd classify that as doing OK ;)
To recap: They will be conducting a detailed exam of both eyes while he is under anesthesia. More than likely, they will perform laser ablation surgery on his right eye to help with the RoP issues and to direct retina development into a more normal pattern. Based on the exam, they may also laser areas in the left eye in the hopes of stabilizing the situation and salvaging as much vision as possible. We'll have a much better idea where we stand.
Update (10:00am): We just met with the retinal specialist. The news confirms the pre-op diagnoses. The right eye looks healthy, if a bit underdeveloped for his age. The surgeon is in the process of lasering that eye to dry up a couple of small bleeds to prevent them from expanding and keep his right eye on track.
The left was, if anything, a bit worse than anticipated. They were able to conduct a much more detailed scan of the eye which showed how large the fold was and indicated that there is definite retinal detachment at the center and
This is apparently classic stage 4-B RoP. Most of the periphery of the retina is attached, and he should have good outside peripheral vision. The doctor indicated that were this an older person who had developed the same problem, they would almost certainly have performed surgery. In the case of Isaak, this has been going on long enough that he has not developed the neural pathways to learn to see, and the risk associated with cutting the eye open and possibly having to take out the lens is not worth it. We do not know for sure if they are going to laser anything on that side.
Interestingly, he will have to have glasses as he gets mobile mostly to protect his very valuable right eye.We'll have more after meeting with the surgeon.
Update (11:00am): Just met with the surgeon. Everything went swimmingly. His right eye looked good and she hit a few spots of concern (but nothing dire) with the laser. She was very happy with the vascular development in the left eye outside of the folded area and only hit a couple of spots there. She confirmed that both she and the retinal specialist concurred that surgery on the left eye carried far more risk than benefit, especially considering how well attached and developed the unaffected retina is. We will see her again a week from Monday for a follow-up. In the meantime, we apply two different types of eye drops for the next 5 days. That is pretty much it for post-op care.
Bekka is back in recovery with Isaak and I'm waiting for them to move to a normal post-op spot so I can join. After that, we'll wait while they find us a spot in the main hospital tower and go from there. His stay in the hospital is strictly to observe for any lingering effects of anesthesia, from an eye standpoint, he is good to go.
Update (Afternoon): Little guy is happily ensconced in a room on the 5th floor at Duke. Once he was awake, you've never seen a baby so eager to get a bottle of milk! Poor guy had not had formula or g-tube feeds since midnight, only some pedialyte overnight (just like grownups and anesthesia, he couldn't eat). This afternoon, he's mostly been napping. I'm sure the stress of the surgery plus the lingering effects of being put under have zapped him but good.
Assuming no issues, we'll be outta here first thing in the morning.
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