I won't lie; it's been a rough couple of days. Yet this afternoon, there is a peace in my heart that all is well and God still has His hand on my little daughter. (That said, I really hope she takes a good nap, and awakens in a happier frame of mind than she went to sleep!)
Yesterday, we took her in to Sacred Heart Children's Hospital for her third surgery with Dr. W. We felt like pros by now and handed her off to the surgical team with very little apprehension.
Two hours later, a discouraged doctor came out to talk to us. Several things went right; several things went wrong. The main thing that went right was the cataract came out with a minimum of difficulty. After that, though, things went south, as the doctor decided her eye was too fragile to attempt the pressure-reducing glaucoma surgery. The other eye, too, was back up to 28 (recall that 15-20 is normal) and means the previous two surgeries are scarred over and did no good in the long-term. Rats!
Things got worse when she began to come out of anesthesia, and coughed and vomited, with the upsetting result that a blood vessel in the back of her right (bad) eye burst, filling the eye with blood. Although not dangerous in itself, a bleed like this prevents us from knowing for weeks whether that eye has any sight, and leaves her at risk for a detached retina and other complications. The anesthesiologist had to put her back to sleep and carefully suction out the vomit so that it did not get aspirated into her lungs.
When we went to her in the recovery room, she was waking up from the second dose of anesthesia, and she was MAD! Her throat hurt, her chest hurt, her eye was bandaged, and she was absolutely furious! She wanted nothing to do with any of us, and curled up into her turtle position, clinging with her toes to the bed when we tried to lift her onto my lap.
Even so, she was released, and all afternoon, she was an absolute grouch in our hotel room, wanting nothing more than to watch Sesame Street on Netflix, and whimpering when the terrible internet prevented her from doing so. I have never wanted good internet so badly in my life.
This morning, we met again with Dr. W, who said that in a few weeks when the blood goes down, we'll find out how the right eye is really doing. He set us up with a regimen of 5 eye drops, to be given 6+ times a day, something Abi heartily disapproves of, with screaming and kicking when we try to put them in. She is absolutely DONE with people messing in her eyes.
To be honest, Hubby and I feel the same way. Even though the pressure in both eyes is still much too high, risking loss to the bit of sight she still has, we agreed with Dr. W that the surgeries on her fragile eyes are too risky and too disruptive too our family and our bonding to continue them at this time. So we drove home through the rain, sad and relieved at the same time.
Her sight will go at some point anyway, and since these surgeries, even the least risky procedures, have been unsuccessful, we decided it's better for now to merely monitor her pain levels. In my heart, I know it's the right decision, but it's still hard to make. I'm glad we tried, but it's time to focus on bonding, on Abi as a whole child, not just on her eyes.
So, the short recap is: Left eye: scrap of sight. Will most likely deteriorate with time due to the high pressure. No color perception, extreme myopia, little acuity. Right eye: no sight at all. Once the blood goes away, possible regaining a little sight (light/shadows? more? nothing?). Will also deteriorate with time due to uncontrolled pressure. Attempts to control pressure unsuccessful due to extensive damage/fragility.
Yesterday, we took her in to Sacred Heart Children's Hospital for her third surgery with Dr. W. We felt like pros by now and handed her off to the surgical team with very little apprehension.
Two hours later, a discouraged doctor came out to talk to us. Several things went right; several things went wrong. The main thing that went right was the cataract came out with a minimum of difficulty. After that, though, things went south, as the doctor decided her eye was too fragile to attempt the pressure-reducing glaucoma surgery. The other eye, too, was back up to 28 (recall that 15-20 is normal) and means the previous two surgeries are scarred over and did no good in the long-term. Rats!
Things got worse when she began to come out of anesthesia, and coughed and vomited, with the upsetting result that a blood vessel in the back of her right (bad) eye burst, filling the eye with blood. Although not dangerous in itself, a bleed like this prevents us from knowing for weeks whether that eye has any sight, and leaves her at risk for a detached retina and other complications. The anesthesiologist had to put her back to sleep and carefully suction out the vomit so that it did not get aspirated into her lungs.
When we went to her in the recovery room, she was waking up from the second dose of anesthesia, and she was MAD! Her throat hurt, her chest hurt, her eye was bandaged, and she was absolutely furious! She wanted nothing to do with any of us, and curled up into her turtle position, clinging with her toes to the bed when we tried to lift her onto my lap.
Even so, she was released, and all afternoon, she was an absolute grouch in our hotel room, wanting nothing more than to watch Sesame Street on Netflix, and whimpering when the terrible internet prevented her from doing so. I have never wanted good internet so badly in my life.
This morning, we met again with Dr. W, who said that in a few weeks when the blood goes down, we'll find out how the right eye is really doing. He set us up with a regimen of 5 eye drops, to be given 6+ times a day, something Abi heartily disapproves of, with screaming and kicking when we try to put them in. She is absolutely DONE with people messing in her eyes.
To be honest, Hubby and I feel the same way. Even though the pressure in both eyes is still much too high, risking loss to the bit of sight she still has, we agreed with Dr. W that the surgeries on her fragile eyes are too risky and too disruptive too our family and our bonding to continue them at this time. So we drove home through the rain, sad and relieved at the same time.
Her sight will go at some point anyway, and since these surgeries, even the least risky procedures, have been unsuccessful, we decided it's better for now to merely monitor her pain levels. In my heart, I know it's the right decision, but it's still hard to make. I'm glad we tried, but it's time to focus on bonding, on Abi as a whole child, not just on her eyes.
So, the short recap is: Left eye: scrap of sight. Will most likely deteriorate with time due to the high pressure. No color perception, extreme myopia, little acuity. Right eye: no sight at all. Once the blood goes away, possible regaining a little sight (light/shadows? more? nothing?). Will also deteriorate with time due to uncontrolled pressure. Attempts to control pressure unsuccessful due to extensive damage/fragility.
Oh Erin,
ReplyDeleteWhat trials for the sweet one you love so dearly! I am thankful you have reached a place of peace over her eye conditions, and will now be able to focus on bonding. I am sorry the surgeries weren't more successful, but thankful you are at peace now with it all.
I pray for her spirits also to be lifted as she heals from all of this physical strain and likely the emotional strain. She knows she is tremendously loved, and that will be all she needs to heal!
God Bless!
If anyone can deal with this, I am confident that you and Matt will be able to do so. It sounds like you have a wonderful medical team as well. My thoughts and prayers are with all of you, and I know you'll be able to go ahead with the bonding that needs to take place now. Many hugs...
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