The appointment. Ryan saw Dr. Hubbard today. Ryan and Peanut (his stuffed animal buddy who now accompanies us to each appointment) both had their eyes dilated. I wish I could say he takes the drops easier (with all the experience he now has) but not so much! Dr. Hubbard examined him and was pleased with his recovery. He does not typically do an in-office follow-up (he would just see him at the next scheduled surgery) but since he did the avastin injection, wanted to make sure he was healing well and had no negative reactions. So far, so good, on that front. He does think there is a reduction in the exudiation, but it will be much easier for him to tell when he does the next Exam Under Anesthesia on June 29th. At the same time, he'll do another round of chryotherapy on another set of vessels, and examine the ones that were treated last time. He'll do another avastin injection as well. It's likely that we'll do this at least 3 more times over the next year.
More Concerns.
Since Ryan's surgery, I've been doing what everyone says not to do -- search the internet for anything I can find on this disease. I still can't find statistics on the number of kids diagnosed with Coat's each year. It's that rare. What I have found is a very good site containing message boards with posts from families all over the world who are battling Coat's in some stage or form. From what I read, Ryan's case could be much better and it could be much worse. Sometimes it's good to be average... What scares me now is, even though we've come to terms (well, we have good days and bad days) on the fact that he will only see from his left eye and peripherally out of his right eye, are the secondary issues that he may face due to the disease, such as formation of cataracts, glaucoma, and atrophy of the eye. I read one frantic post from a mom that her daughter's eye was "dying" after her treatments which made my heart break for her. Of course, we want Ryan to appear as "normal" as possible, despite having such severe vision loss. I asked Dr. Hubbard about the risk of atrophy and he said in Ryan's case, the biggest risk for Ryan is Strabismus, a vision condition in which a person can not align both eyes simultaneously, so the eye turns out (commonly known as "lazy eye"). I asked about the dreaded patching of his non-Coat's eye (to strengthen the Coat's eye), but he said often the patching has little, if no, effect on affected eye, and surgery is often warranted instead to straighten the eye. Unfortunately, success rate for that surgery is limited when vision loss has already occurred, so we'll watch his eye closely and Dr. Hubbard will work in tandem with our pediatric opthamologist to determine the best plan for keeping the eye looking forward.
Also, since the unaffected eye will compensate for the loss of vision in the other eye, he will suffer some loss of depth perception; however, given his age, he will likely compensate for any depth perception loss better than he would if this condition presented later in his life. We'll just have to wait and see and hope that he can continue playing golf! Speaking of golf, when I put Ryan in the car after his appointment, he said: "mommy, I like Dr. Hubbard and Tiger Woods". He picked two good heroes!
Next surgery.
We'll post again after Ryan's next surgery scheduled for June 29th. In the meantime, we're spending a week at the beach and I'm told that Ryan can play in the water, sand, etc. like any other boy without an eye issue, which was a nice thing to hear.
Wednesday, May 27, 2009
Friday, May 15, 2009
The Recovery
Kids are amazing.
Within 24 hours of Ryan's surgery, the kid was grooving to American Idol. Kids are so resilient! He slept through the night following surgery, and woke up pretty angry and upset. He kept holding the eye and telling us that it hurt. After the tylenol kicked in, he wanted to go watch tv so he spent a good hour in front of the tv before he opened either eye. It was probably scary for him. Once open, the eye looked MUCH better than we'd anticipated. It was a bit swollen and red in the outside corner, but we were expecting him to resemble Rocky. He wasn't thrilled, not having eaten for 36 hours, so breakfast was grapes, a pop tart and fruit snacks. Whatever the patient wants, right? We waited a while before putting the first set of drops in and that wasn't very fun. He screamed and cried, so we were traumatized by the thought of doing that 4 times a day for a week. He slept all night the following night, but woke up in a similar manner -- in pain and angry, holding the eye. We repeated the previous days' events and by noon, he was ready to go back to school. He misses his friends and teachers, and they gave him a warm welcome. 48 hours after surgery, he was back at school chasing his friends (and girlfriend) around the playground.
The drops.
Brian always comes up with the ideas. Before his surgery, Ryan was given this sweet little yarn doll that he named "Peanut". Brian told Ryan to put drops in Peanut's eye (with the cap on) and sure enough, that did it. Now, before each eyedrop administration, Ryan puts the drops in Peanut's eyes, then offers himself up for drops. He still squeezes his eyes shut so tightly that it requires holding them open (and being quick!), but we've come a long way since those first ones. Hopefully soon he'll be administering them himself (well, that's a bit ambitious).
The party.
Ryan was back to 100% for his 3rd birthday party. His eye was a tad bit red, 5 days after surgery, but you really have to look closely to notice. He had the best time --even though it poured down rain! The jumpy turned into a slip n' slide which made the kids (not so much the parents) very happy! It was a celebration for us that we survived the first chapter of this and also that we have such an amazing kid! Some photos from the party are below. We all needed some smiles after the last two weeks!
Next Steps.
Ryan goes back for an office visit with Dr. Hubbard on May 27th. We're not sure what he'll be able to see as far as positive results of the first surgery in the office, but I imagine he'll track his recovery and we'll discuss next steps. He's scheduled for round 2 of surgery on June 29th. Now that round 1 is behind us, at least we know what to expect, we hope that round 2 won't be so difficult (assuming we can get him in the hospital doors now that he's on to us!). The search for glasses has started. That's our next hurdle!
Is this a happy face, or what?
Within 24 hours of Ryan's surgery, the kid was grooving to American Idol. Kids are so resilient! He slept through the night following surgery, and woke up pretty angry and upset. He kept holding the eye and telling us that it hurt. After the tylenol kicked in, he wanted to go watch tv so he spent a good hour in front of the tv before he opened either eye. It was probably scary for him. Once open, the eye looked MUCH better than we'd anticipated. It was a bit swollen and red in the outside corner, but we were expecting him to resemble Rocky. He wasn't thrilled, not having eaten for 36 hours, so breakfast was grapes, a pop tart and fruit snacks. Whatever the patient wants, right? We waited a while before putting the first set of drops in and that wasn't very fun. He screamed and cried, so we were traumatized by the thought of doing that 4 times a day for a week. He slept all night the following night, but woke up in a similar manner -- in pain and angry, holding the eye. We repeated the previous days' events and by noon, he was ready to go back to school. He misses his friends and teachers, and they gave him a warm welcome. 48 hours after surgery, he was back at school chasing his friends (and girlfriend) around the playground.
The drops.
Brian always comes up with the ideas. Before his surgery, Ryan was given this sweet little yarn doll that he named "Peanut". Brian told Ryan to put drops in Peanut's eye (with the cap on) and sure enough, that did it. Now, before each eyedrop administration, Ryan puts the drops in Peanut's eyes, then offers himself up for drops. He still squeezes his eyes shut so tightly that it requires holding them open (and being quick!), but we've come a long way since those first ones. Hopefully soon he'll be administering them himself (well, that's a bit ambitious).
The party.
Ryan was back to 100% for his 3rd birthday party. His eye was a tad bit red, 5 days after surgery, but you really have to look closely to notice. He had the best time --even though it poured down rain! The jumpy turned into a slip n' slide which made the kids (not so much the parents) very happy! It was a celebration for us that we survived the first chapter of this and also that we have such an amazing kid! Some photos from the party are below. We all needed some smiles after the last two weeks!
Next Steps.
Ryan goes back for an office visit with Dr. Hubbard on May 27th. We're not sure what he'll be able to see as far as positive results of the first surgery in the office, but I imagine he'll track his recovery and we'll discuss next steps. He's scheduled for round 2 of surgery on June 29th. Now that round 1 is behind us, at least we know what to expect, we hope that round 2 won't be so difficult (assuming we can get him in the hospital doors now that he's on to us!). The search for glasses has started. That's our next hurdle!
Is this a happy face, or what?
Friday, May 8, 2009
First Surgery
It's Finally Here...
Although it seems like many months, not just 2 weeks, since Ryan's diagnosis, surgery day finally arrived. To make sure he was well enough for surgery, we took Ryan to his pediatrician to make sure he was not developing another sinus infection.
Having been in and out of doctor's offices more in the last week than in his entire life, Ryan was happy once he realized he did not have to have the "drops" at that visit! She did inspect his eye (and let me look through the pin-hole) and sure enough, you can see how yellow his eye is (the other eye has the normal red -- hence the "red-eye" in photos). It's like looking into an eye full of pollen (it is peak pollen season in Atlanta...) She confirmed that our surgeon is top notch and felt confident in our remaining in Atlanta for the procedure and with doing the Avastin injection, which is only recently being used for Coat's patients.
It almost didn't happen..
We were told that we'd get a call before Friday with a surgery time. When I hadn't heard by noon on Friday (although I was chained to my desk for fear I'd miss the call!) I called the hospital and was told Ryan wasn't on the already booked surgical calendar. This is not what an anxious mother wants to hear. After some begging and pleading, they added him to the end of the day - at 2:00.
Really? No food?
Now I know why they typically schedule children's surgeries first thing. It's not easy convincing a 2 (almost 3-year-old) to put down the pop tart and have a nice glass of water for breakfast. And lunch! I finally found a place to take him without food -- the car wash! Special thanks to a good friend who brought her 3 year old to hit a few golf balls with Ryan outside to help pass the time! Ryan absolutely loves to hit golf balls and Tiger Woods is his hero! We took extreme measures to lock Ryan out of the pantry -- Brian tied it shut with an actual belt. Ryan was not happy about that. Luckily, an almost 3-year-old boy believes that the pantry doors are broken.
Finally Made It!
As luck would have it, Emory's graduation was ending as we were nearing the hospital on Emory's campus with a very crabby child begging for snacks. The traffic was touch and go for a while -- we almost abandoned the car and walked! Lucky for us, they offer valet parking. We arrived on time and our luck turned when we saw a familiar face. Brian's former law clerk is now a nurse anesthetist and got on Ryan's case when she saw his name. She was wonderful and made us feel so much better, just knowing she was with him. Everything about Children's was impressive. We are so fortunate to live in a city with a hospital like Children's -- we'd never given it a second thought before now since we've only driven by it. It goes without saying that we will be recurring contributors!
The Prep.
Ryan was not happy about putting on the hospital gown and surgical cap, especially after 3 set of eyedrops (2 each time) were administered in both eyes. Uggh -- the drops! Once he took the dose of liquid anesthesia, though, he went on to la-la land and did not care what he was changed into! He was so cute that it was hard for us not to laugh and cry at the same time. Brian (you can always count on him for a good sense of humor) asked where we could get more of that stuff for bedtime! Once Ryan was back in the OR, the doctor came to tell us that he'd done an initial exam under anesthesia and found the disease to be pretty widespread, but confirmed that Ryan has a classic case of Coat's. We were his 12th surgery today - all of the prior surgeries and exams for retinoblastoma patients as young as 7 months, so as sad for Ryan as we were, and feeling like all the other scared, helpless parents, we felt fortunate to be there for Coat's. He told us the gameplan would be the avastin injection and chryotherapy.
The Surgery.
The procedure lasted about an hour, after which the doctor came to tell us that it went well and they were able to do the Avastin injection and perform chryotherapy on about 25% of the leaking blood vessels. Trying to get them all at one time is too much trauma on the eye. He had told us beforehand that sometimes the first surgery "triggers" leaking in others and so the condition can get worse before it gets better. It's a wait and see approach on both that and the effects of the avastin injection. He confirmed again that Ryan has good peripheral vision in that eye, but didn't sound optimistic about saving much central vision. Again, the goal is to save the actual eye, but saving some vision is ideal, even if it is not correctable.
The Recovery.
Well, we were warned about the post-op recovery! When he was brought back to us after surgery, Ryan was unhappy, to say the least! He was inconsolable (or as his big sis would say: "freaking out") which we understand is not unusual, but broke our hearts more than anything we've been through thus far. After about 45 minutes of flailing and holding the eye, he fell asleep such that they were able to remove his IV and we took him home. He slept the entire way home and transferred right to the couch. We hope he sleeps through the night so that his recovery is underway overnight. He hasn't opened the eye yet, but we understand he'll be pretty sore for the next day or so. The torture for him (and us) will be the 4 times daily antibiotic drops in the eye for a week. We're not above bribery! Good thing his birthday party is this weekend -- we're using that for all it's worth!
What's Next?
We take Ryan back in 2 weeks for a post-op checkup, to ensure the eye is healing properly and to assess the benefits from the avastin injection and status of the blood vessels treated with chryotherapy. He will do his second round (not sure if it will be only Chryo or another avastin shot as well) in 8 weeks. We appreciate this aggressive approach because the sooner we stop the leaking, the more vision is potentially saved. Unfortunately, this condition is likened to a hose in that you can patch a leak but it can spring a new one.
Our Continued Thanks.
We simply cannot get over how unbelievable our family and friends are. The outpouring of prayers, well wishes and support are truly what is keeping the wheels on!
Thank heaven for medicine.
Ryan will not be happy about this when he's old enough to read this, but here are photos of Ryan just after he swallowed the anesthesia medication (wearing the special snail hair cover he got for having an "in" with our wonderful nurse anesthetist!)
Although it seems like many months, not just 2 weeks, since Ryan's diagnosis, surgery day finally arrived. To make sure he was well enough for surgery, we took Ryan to his pediatrician to make sure he was not developing another sinus infection.
Having been in and out of doctor's offices more in the last week than in his entire life, Ryan was happy once he realized he did not have to have the "drops" at that visit! She did inspect his eye (and let me look through the pin-hole) and sure enough, you can see how yellow his eye is (the other eye has the normal red -- hence the "red-eye" in photos). It's like looking into an eye full of pollen (it is peak pollen season in Atlanta...) She confirmed that our surgeon is top notch and felt confident in our remaining in Atlanta for the procedure and with doing the Avastin injection, which is only recently being used for Coat's patients.
It almost didn't happen..
We were told that we'd get a call before Friday with a surgery time. When I hadn't heard by noon on Friday (although I was chained to my desk for fear I'd miss the call!) I called the hospital and was told Ryan wasn't on the already booked surgical calendar. This is not what an anxious mother wants to hear. After some begging and pleading, they added him to the end of the day - at 2:00.
Really? No food?
Now I know why they typically schedule children's surgeries first thing. It's not easy convincing a 2 (almost 3-year-old) to put down the pop tart and have a nice glass of water for breakfast. And lunch! I finally found a place to take him without food -- the car wash! Special thanks to a good friend who brought her 3 year old to hit a few golf balls with Ryan outside to help pass the time! Ryan absolutely loves to hit golf balls and Tiger Woods is his hero! We took extreme measures to lock Ryan out of the pantry -- Brian tied it shut with an actual belt. Ryan was not happy about that. Luckily, an almost 3-year-old boy believes that the pantry doors are broken.
Finally Made It!
As luck would have it, Emory's graduation was ending as we were nearing the hospital on Emory's campus with a very crabby child begging for snacks. The traffic was touch and go for a while -- we almost abandoned the car and walked! Lucky for us, they offer valet parking. We arrived on time and our luck turned when we saw a familiar face. Brian's former law clerk is now a nurse anesthetist and got on Ryan's case when she saw his name. She was wonderful and made us feel so much better, just knowing she was with him. Everything about Children's was impressive. We are so fortunate to live in a city with a hospital like Children's -- we'd never given it a second thought before now since we've only driven by it. It goes without saying that we will be recurring contributors!
The Prep.
Ryan was not happy about putting on the hospital gown and surgical cap, especially after 3 set of eyedrops (2 each time) were administered in both eyes. Uggh -- the drops! Once he took the dose of liquid anesthesia, though, he went on to la-la land and did not care what he was changed into! He was so cute that it was hard for us not to laugh and cry at the same time. Brian (you can always count on him for a good sense of humor) asked where we could get more of that stuff for bedtime! Once Ryan was back in the OR, the doctor came to tell us that he'd done an initial exam under anesthesia and found the disease to be pretty widespread, but confirmed that Ryan has a classic case of Coat's. We were his 12th surgery today - all of the prior surgeries and exams for retinoblastoma patients as young as 7 months, so as sad for Ryan as we were, and feeling like all the other scared, helpless parents, we felt fortunate to be there for Coat's. He told us the gameplan would be the avastin injection and chryotherapy.
The Surgery.
The procedure lasted about an hour, after which the doctor came to tell us that it went well and they were able to do the Avastin injection and perform chryotherapy on about 25% of the leaking blood vessels. Trying to get them all at one time is too much trauma on the eye. He had told us beforehand that sometimes the first surgery "triggers" leaking in others and so the condition can get worse before it gets better. It's a wait and see approach on both that and the effects of the avastin injection. He confirmed again that Ryan has good peripheral vision in that eye, but didn't sound optimistic about saving much central vision. Again, the goal is to save the actual eye, but saving some vision is ideal, even if it is not correctable.
The Recovery.
Well, we were warned about the post-op recovery! When he was brought back to us after surgery, Ryan was unhappy, to say the least! He was inconsolable (or as his big sis would say: "freaking out") which we understand is not unusual, but broke our hearts more than anything we've been through thus far. After about 45 minutes of flailing and holding the eye, he fell asleep such that they were able to remove his IV and we took him home. He slept the entire way home and transferred right to the couch. We hope he sleeps through the night so that his recovery is underway overnight. He hasn't opened the eye yet, but we understand he'll be pretty sore for the next day or so. The torture for him (and us) will be the 4 times daily antibiotic drops in the eye for a week. We're not above bribery! Good thing his birthday party is this weekend -- we're using that for all it's worth!
What's Next?
We take Ryan back in 2 weeks for a post-op checkup, to ensure the eye is healing properly and to assess the benefits from the avastin injection and status of the blood vessels treated with chryotherapy. He will do his second round (not sure if it will be only Chryo or another avastin shot as well) in 8 weeks. We appreciate this aggressive approach because the sooner we stop the leaking, the more vision is potentially saved. Unfortunately, this condition is likened to a hose in that you can patch a leak but it can spring a new one.
Our Continued Thanks.
We simply cannot get over how unbelievable our family and friends are. The outpouring of prayers, well wishes and support are truly what is keeping the wheels on!
Thank heaven for medicine.
Ryan will not be happy about this when he's old enough to read this, but here are photos of Ryan just after he swallowed the anesthesia medication (wearing the special snail hair cover he got for having an "in" with our wonderful nurse anesthetist!)
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