I am such a blogger slacker these days! 10 days since my last post? I'm going to lose all my followers!
Let me give you a little incentive to come back. Here's Chloe's Easter/Spring greeting to you
Monday, April 5, 2010
Thursday, March 25, 2010
Cincinnati for Cataract Surgery
It's unbelievable how complicated the treatment of Chloe's eye has become.
We were seeing the Retinologists and also the Opthamologist in Dayton. Then they sent us to the Retinologist in Detroit for the vitrectomy. He then sent us back to Dayton for treatment of Chloe's newly diagnosed cataract. But the opthamologist in Dayton informs me that, although he specializes in cataract surgery, the proper equipment to do cataract surgery on such a small baby does not exist in Dayton. He COULD do the surgery at one of the Dayton hospitals but 1. he doesn't have privileges there and 2. it's not a Children's Hospital so it's not ideal for Chloe. He's going to refer us to Cincinnati.
I immediately jumped on the phone with this, the fourth practice involved in Chloe's vision care, because I really want to get the ball rolling. My understanding is that the longer Chloe goes with impaired vision in her bad eye the more likely amblyopia (lazy eye) will set in. I spend the next two days constantly making phone calls (ALL the nurses now know me) and hovering around the phone waiting for return calls and thinking Chloe will get surgery by the end of this week. I finally speak to the head of pediatric opthamology in Cincinnati and, having reviewed Chloe's records, she is of the opinion that Chloe's eye is pretty much screwed up already and her cataract surgery is not emergency. They'll get us in for an examination next week and operation room the following week. This is not what I expected to hear. I try to convince her otherwise and move up the schedule...but to no avail. I'm in tears and completely freaked out. I call the local opthamologist and retinologist. The opthamologist agrees with Cincinnati. He says he doesn't have the power to make them do the surgery right away and, even if he did, he couldn't argue that it would make a difference because he didn't believe that. The retinologist says amblyopia is not his expertise - it's that of the opth. The division of jurisdiction between Opthamologists and Retinologists is very annoying, by the way. It was the retinologists that led me to believe we're in a hurry and now they say it's not their place to say.
So, after a few dozen phone calls and lots of frustration we are left waiting and patching. For what reason? I don't really know. It's just the only thing I can do at this point to help Chloe. Feeling a bit helpless and frustrated. Can you tell? At least we can continue to pray and hope for the best. We can also be glad that the retinologist she's scheduled with in Cincinnati is something special. Supposedly, he has the rare ability to bridge the responsibility between retinology and opthamology. If Chloe needs work in both the front and back of her eye he can do both (instead of sending her elsewhere). Dave researched him and says that he also practices in at the #1 nationally ranked pediatric opthamology hospital in the US. Oh...the next two weeks can't be over soon enough!
In the meantime, Chloe did receive her Synagis shot on Monday and, since she won't have surgery for at least two weeks, she received her six month vaccinations yesterday. It kind of disturbed me yesterday how calm I was as she was poked five times over the last three days. I was in tears every time Solana got shots as a baby. Now I hold Chloe while the retinologists uses a tool to pull/hold her eyelids apart for an eye exam and I contemplate turning up her oxygen as she turns purple screaming (you know the one that's silent because they're not breathing?) during her vaccinations. Should it be possible for a mother to be conditioned to her child's painful medical procedures? Sigh. I'm sure it's fine but just struck me as odd that I didn't cry. (Don't get me wrong. I haven't lost any of my motherly desire to make her feel better. I balked when the nurse wouldn't get another nurse to help her so they could give two shots at a time making the four shots go by faster. And I scooped up my poor distressed baby to make her feel better as soon as shots were done!)
We were seeing the Retinologists and also the Opthamologist in Dayton. Then they sent us to the Retinologist in Detroit for the vitrectomy. He then sent us back to Dayton for treatment of Chloe's newly diagnosed cataract. But the opthamologist in Dayton informs me that, although he specializes in cataract surgery, the proper equipment to do cataract surgery on such a small baby does not exist in Dayton. He COULD do the surgery at one of the Dayton hospitals but 1. he doesn't have privileges there and 2. it's not a Children's Hospital so it's not ideal for Chloe. He's going to refer us to Cincinnati.
I immediately jumped on the phone with this, the fourth practice involved in Chloe's vision care, because I really want to get the ball rolling. My understanding is that the longer Chloe goes with impaired vision in her bad eye the more likely amblyopia (lazy eye) will set in. I spend the next two days constantly making phone calls (ALL the nurses now know me) and hovering around the phone waiting for return calls and thinking Chloe will get surgery by the end of this week. I finally speak to the head of pediatric opthamology in Cincinnati and, having reviewed Chloe's records, she is of the opinion that Chloe's eye is pretty much screwed up already and her cataract surgery is not emergency. They'll get us in for an examination next week and operation room the following week. This is not what I expected to hear. I try to convince her otherwise and move up the schedule...but to no avail. I'm in tears and completely freaked out. I call the local opthamologist and retinologist. The opthamologist agrees with Cincinnati. He says he doesn't have the power to make them do the surgery right away and, even if he did, he couldn't argue that it would make a difference because he didn't believe that. The retinologist says amblyopia is not his expertise - it's that of the opth. The division of jurisdiction between Opthamologists and Retinologists is very annoying, by the way. It was the retinologists that led me to believe we're in a hurry and now they say it's not their place to say.
So, after a few dozen phone calls and lots of frustration we are left waiting and patching. For what reason? I don't really know. It's just the only thing I can do at this point to help Chloe. Feeling a bit helpless and frustrated. Can you tell? At least we can continue to pray and hope for the best. We can also be glad that the retinologist she's scheduled with in Cincinnati is something special. Supposedly, he has the rare ability to bridge the responsibility between retinology and opthamology. If Chloe needs work in both the front and back of her eye he can do both (instead of sending her elsewhere). Dave researched him and says that he also practices in at the #1 nationally ranked pediatric opthamology hospital in the US. Oh...the next two weeks can't be over soon enough!
In the meantime, Chloe did receive her Synagis shot on Monday and, since she won't have surgery for at least two weeks, she received her six month vaccinations yesterday. It kind of disturbed me yesterday how calm I was as she was poked five times over the last three days. I was in tears every time Solana got shots as a baby. Now I hold Chloe while the retinologists uses a tool to pull/hold her eyelids apart for an eye exam and I contemplate turning up her oxygen as she turns purple screaming (you know the one that's silent because they're not breathing?) during her vaccinations. Should it be possible for a mother to be conditioned to her child's painful medical procedures? Sigh. I'm sure it's fine but just struck me as odd that I didn't cry. (Don't get me wrong. I haven't lost any of my motherly desire to make her feel better. I balked when the nurse wouldn't get another nurse to help her so they could give two shots at a time making the four shots go by faster. And I scooped up my poor distressed baby to make her feel better as soon as shots were done!)
Saturday, March 20, 2010
No Vitrectomy, Cataract
The trip to Michigan went smoothly. Dave and I drove Chloe up on Thursday afternoon and spent the night at the Westin. They gave us a really good hospital rate of $72 so we were pretty happy with that. It was only 15 minutes from the hospital - pretty convenient. We had to be at the hospital at 8am for Chloe's 9:30 EUA (Examination Under Anesthesia). Chloe had the same Anesthesiologist as the first time. I drilled him about the anesthesia for about 15 minutes making sure I knew exactly what he planned to do under every possible circumstance and telling him every scap of information that I thought might be important to him. I was NOT going to have another surprise propofal "incident."** We then met with the surgeon. We've been patching Chloe's eyes to try and avoid lazy eye. He discusses with us the different schools of thought regarding this. Some doctors think there's a problem after 6 weeks of clouded vision and some after 9 weeks of clouded vision. We believe Chloe's had clouded vision for about 5 weeks so that comforted us a bit. He would go in for the examination and then come back to talk to us before beginning any procedure.
He returned with surprising news. After four weeks of retinologist visits and another week waiting for our appointment in Michigan, the blood is gone from Chloe's left eye. She does not need a vitrectomy. What a shock! Surprise! Great! Then he went on to explain that Chloe has a cataract that is clouding her vision. What a shock...surprise...not-so-great. She'll need surgery to correct the cataract but he doesn't do that surgery. We'll need to work with Chloe's opthamologist to get that correct.
So we find ourselves headed back to Dayton much more quickly than expected. I feel pressured to figure this out right away. We cancelled Chloe's Wednesday Synagis appointment because of Friday's anesthesia. It's now scheduled for this coming Monday afternoon. I'm worried, though, that Monday's synagis shot could delay possible cataract surgery by a few weeks I don't want to get the shot and then have them say, "Oh, we wish you'd told us about that shot. We could have gotten Chloe in for surgery tomorrow but now she has to wait two more weeks...". Unfortunately, the opthamologist was out of the office Friday. I spoke to his Technician and she said she'd try to get ahold of him at home but I never heard back. I know that putting off her Synagis shot is bad (this is her RSV preventative) but, if they can get her in for cataract surgery right away, I think I'd rather put off her Synagis another couple days and get the surgery. Of course, I have no idea what kind of timeline they can give me for surgery... I'll be burning up the phone lines right away Monday morning and in suspense until then. Any words of experience or advise would be much appreciated here! How bad is it to put off her shot another few days?
Until then we continue patching Chloe's eye and wait.
**He assured me that he would NOT use propofal for either the examination or the procedure (if they chose to do the vitrectomy) on Chloe and noted that it wouldn't even be a good choice for her case. Why they used it for her second EUA last time, he could not explain to me - I didn't dwell, though.
He returned with surprising news. After four weeks of retinologist visits and another week waiting for our appointment in Michigan, the blood is gone from Chloe's left eye. She does not need a vitrectomy. What a shock! Surprise! Great! Then he went on to explain that Chloe has a cataract that is clouding her vision. What a shock...surprise...not-so-great. She'll need surgery to correct the cataract but he doesn't do that surgery. We'll need to work with Chloe's opthamologist to get that correct.
So we find ourselves headed back to Dayton much more quickly than expected. I feel pressured to figure this out right away. We cancelled Chloe's Wednesday Synagis appointment because of Friday's anesthesia. It's now scheduled for this coming Monday afternoon. I'm worried, though, that Monday's synagis shot could delay possible cataract surgery by a few weeks I don't want to get the shot and then have them say, "Oh, we wish you'd told us about that shot. We could have gotten Chloe in for surgery tomorrow but now she has to wait two more weeks...". Unfortunately, the opthamologist was out of the office Friday. I spoke to his Technician and she said she'd try to get ahold of him at home but I never heard back. I know that putting off her Synagis shot is bad (this is her RSV preventative) but, if they can get her in for cataract surgery right away, I think I'd rather put off her Synagis another couple days and get the surgery. Of course, I have no idea what kind of timeline they can give me for surgery... I'll be burning up the phone lines right away Monday morning and in suspense until then. Any words of experience or advise would be much appreciated here! How bad is it to put off her shot another few days?
Until then we continue patching Chloe's eye and wait.
**He assured me that he would NOT use propofal for either the examination or the procedure (if they chose to do the vitrectomy) on Chloe and noted that it wouldn't even be a good choice for her case. Why they used it for her second EUA last time, he could not explain to me - I didn't dwell, though.
Thursday, March 11, 2010
Dangit Dangit Dangit!!!
A few hours after discussing the delay on Chloe's eye I received a call from the Pediatrician's office. The nurse informed me that our Ped received the Swallow Study report and that she recommends we continue thickening Chloe's milk.
Um. No. I helpfully informed her that Chloe was already released from thickener by the Speech Therapist at the hospital.
She went to talk to the doctor and came back. Well, the doctor is not comfortable with the fact that there were 5 (slight) penetrations during the swallow study and she'd worry about aspirations (breathing the milk into her lungs) if we quit the thickener too soon. I argue that Chloe had to wait an extra hour to eat and was STARVING - eating with atypical ferocity - during the study. Plus, the speech therapist and radiologist noted that the penetrations were mild and came right back out (I'm practically begging them to see reason here...).
She talks to the doctor again and comes back. The doctor said that "if it were HER daughter she wouldn't take the risk of her aspirating and getting pnuemonia."
Well...shit. She played the Wild Card. Like I'm going to argue with that...
So we're back on thickener. It's really not a big deal once I got over the initial disappointment. In fact, I felt kind of silly arguing it with them. But... I did negotiate one breastfeeding per day (with extreme caution) so that's a good thing.
We THOUGHT we were on a roll this week. I can hear some obnoxious junior high voice in the back of my head yelling, "PSYYYCH!" Punk.
Um. No. I helpfully informed her that Chloe was already released from thickener by the Speech Therapist at the hospital.
She went to talk to the doctor and came back. Well, the doctor is not comfortable with the fact that there were 5 (slight) penetrations during the swallow study and she'd worry about aspirations (breathing the milk into her lungs) if we quit the thickener too soon. I argue that Chloe had to wait an extra hour to eat and was STARVING - eating with atypical ferocity - during the study. Plus, the speech therapist and radiologist noted that the penetrations were mild and came right back out (I'm practically begging them to see reason here...).
She talks to the doctor again and comes back. The doctor said that "if it were HER daughter she wouldn't take the risk of her aspirating and getting pnuemonia."
Well...shit. She played the Wild Card. Like I'm going to argue with that...
So we're back on thickener. It's really not a big deal once I got over the initial disappointment. In fact, I felt kind of silly arguing it with them. But... I did negotiate one breastfeeding per day (with extreme caution) so that's a good thing.
We THOUGHT we were on a roll this week. I can hear some obnoxious junior high voice in the back of my head yelling, "PSYYYCH!" Punk.
Michigan Delay
I received a call from the local retinalogist's nurse today. The exam/surgery will be the 19th (next Friday). The retinalogist originally said he wanted Chloe there this week or early next week but, apparently, there's some big conference going on in Vail next week. All of the surgeons in Detroit will be at this conference. Their schedules were all booked for this Friday in preparation for a week away and they'll be back just in time to take Chloe next Friday.
On the one hand I'm glad for the week delay because we get to spend it with my parents. On the other hand, I was under the impression that the longer we wait the more likely Chloe's vision will be damaged. I drilled the local nurse about it this morning (none of the doctors were available, of course) and she assured me that, if it were a problem to wait, the local doctor would have said something when they booked the surgery date. I was glad she was so "sure" of that but asked to have the doctor call me back, anyway. It's too bad the two doctors who've actually looked at Chloe's eyes this past month are both out of the office for a week. I missed a call back from a third doctor in their practice but she'll call me tomorrow.
She will surely tell me that the possible detrimental effect of waiting a few days is negligible compared to the benefit of going to the world renowned doctors in Detroit. I just want to hear her say that.
We'll be patching Chloe's good eye in the meantime.
On the one hand I'm glad for the week delay because we get to spend it with my parents. On the other hand, I was under the impression that the longer we wait the more likely Chloe's vision will be damaged. I drilled the local nurse about it this morning (none of the doctors were available, of course) and she assured me that, if it were a problem to wait, the local doctor would have said something when they booked the surgery date. I was glad she was so "sure" of that but asked to have the doctor call me back, anyway. It's too bad the two doctors who've actually looked at Chloe's eyes this past month are both out of the office for a week. I missed a call back from a third doctor in their practice but she'll call me tomorrow.
She will surely tell me that the possible detrimental effect of waiting a few days is negligible compared to the benefit of going to the world renowned doctors in Detroit. I just want to hear her say that.
We'll be patching Chloe's good eye in the meantime.
Wednesday, March 10, 2010
Michigan Here We Come
Well, I decided today that I have zero intuition. I had a really good feeling about today's eye exams. But, unfortunately, I suck. Chloe still has blood in her left eye. After a month, both the opthamologist and retinalogist are nervous. The concern is that the blood is blocking her vision in that eye. She's still developing her vision, synapses are connecting, etc. Inability to see because of blood could have long-term effects on her vision. They're sending Chloe to the experts in Michigan and anticipate that they'll to a vitrectomy. As of this moment we're waiting for the local nurse to hear back from the surgical scheduler in Michigan to tell us when they can fit Chloe into the schedule.
The ironic thing about this trip to Michigan is that my parents are coming from Texas for a week. They arrive Friday. If you recall, my parent's last week-long visit to Ohio (for Thanksgiving) coincided with our last trip to Michigan. Apparently, they have some kind of radar to know exactly when we'll be needing them and plan their trips accordingly. Thank God for my awesome parents.
As far as the vitrectomy goes - I don't know of any dangers/concerns inherent to the surgery itself. Of course, Chloe will be anaesthetised, intubated, and her eye will be sliced. I find none of these things appealing. But the vitrectomy itself should have no affect on her vision and she should heal from it. Hopefully, it will save her vision. I'm ahead of myself, though. They haven't even seen her. As of now we don't know when we're leaving or even if she'll have the surgery. I'll keep you up-to-date as much as possible.
The ironic thing about this trip to Michigan is that my parents are coming from Texas for a week. They arrive Friday. If you recall, my parent's last week-long visit to Ohio (for Thanksgiving) coincided with our last trip to Michigan. Apparently, they have some kind of radar to know exactly when we'll be needing them and plan their trips accordingly. Thank God for my awesome parents.
As far as the vitrectomy goes - I don't know of any dangers/concerns inherent to the surgery itself. Of course, Chloe will be anaesthetised, intubated, and her eye will be sliced. I find none of these things appealing. But the vitrectomy itself should have no affect on her vision and she should heal from it. Hopefully, it will save her vision. I'm ahead of myself, though. They haven't even seen her. As of now we don't know when we're leaving or even if she'll have the surgery. I'll keep you up-to-date as much as possible.
Tuesday, March 9, 2010
Swallow Study
Chloe passed her swallow study today. No more thickener in her milk. Yeah!
I still need to mix some powder formula into my breastmilk to boost the calories in her food. But I just might sneak in an attempt at breast feeding once a day or so. :-D
Tomorrow we visit the retinologist and opthamologist. If the blood has cleared out of her left eye we just may be able to ditch the eye patches, as well.
I still need to mix some powder formula into my breastmilk to boost the calories in her food. But I just might sneak in an attempt at breast feeding once a day or so. :-D
Tomorrow we visit the retinologist and opthamologist. If the blood has cleared out of her left eye we just may be able to ditch the eye patches, as well.
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