Posted in Mercy Medical
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Yesterday was Mercy's day to have her Bronchoscopy... it was a long day, but the Dr. saw NOTHING unusual with her throat. Praise God!!! He also did a laser surgery while she was sedated. There are NO airway issues! I went up and back yesterday, so was exhausted. But it was good to sleep in my own bed. This coming week we have my parents coming. We will be roofing the porch, and other assorted things, depending on the weather. I take Mercy back up to Cincinnati on Monday evening, and have to stay until Wednesday. I see the Neurologist, and hemangioma dr., and the ophthalmologist. I'll try to get updated photos up soon. We have some adorable ones of Mercy, and Josiah had a birthday, so expect a day of just photos soon! May you have a blessed day tomorrow as we celebrate the Resurrection of our Savior!!! |
Posted in Mercy Medical
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The trees are budding and the grass is turning green. Spring is approaching, and we only have between 20 and 30 days to finish school. Shh... don't tell the kids! We'll keep going, just on an easier schedule through the summer. They lose too much if we take a long break. I'll still do math, reading, and music all summer long. We have most of the answers we were looking for with Mercy. It looks like we will stop all laser treatments until she is older and we look at what is left after the hemangioma disappears. Or at least until she is old enough to sedate. I will not put her through another time like she had before. When she is a little larger (around 6 months... she is 3 months this week), we will do surgery on her eye to remove as much of the hemangioma as possible. That will relieve the pressure on the eye socket, and hopefully create less pressure which will in turn not push out the bones so much. We are changing our dermatologist to one who works exclusively with pediatrics, to follow the prednisone dosages, etc. I assume we will go in to her in the next couple weeks. After that, it looks like I will only have to go in every 4-6 weeks for them to track her. That is so much better for my schedule! So far I can schedule everyone on the same day, so we can make one long day of seeing all the doctors instead of going once or twice a week like we have these past few weeks. So I am feeling hopeful. Thanks for all your prayers. You will never know what an encouragement they have been for me.
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Posted in Mercy Medical
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For the first time, we got good news in dealing with Mercy's problems. I am going to take her to the pediatric plastic surgeon tomorrow and should have more answers as to what to do. For now, we are celebrating Josiah's 10th birthday with a day off school. I have used the day to get caught up with fighting the health insurance for Mercy's coverage. You would think that with as much as we pay them, they would cover SOMETHING without a fight, but that is not the case! Thank you all for your prayers. They mean so much to us. |
The hemangioma stops just below the ear... does not extend any farther down the neck, and is not at risk of blocking airways. I am so thrilled to finally feel encouraged!Posted in Mercy Medical
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I returned last night from the appointments for Mercy. There were good reports and bad reports.
The Cat scan did show that the hemangioma is not in her brain, which we are glad for. The prednisone is also has reduced the swelling behind her eye enough that it is no longer bulging. Unfortunately, the hemangioma is all behind the eye, left face, and down the neck. I just got more and more discouraged with each appointment. The laser surgery was harrowing, and I will be doing more research before her second set in a month. There was no cooling of the skin, and she was not sedated in any way. It obviously was very painful and traumatic for her. In turn, it was traumatic for me. I will be asking about common procedures for infants before putting her through it again. I want to be sure we are doing everything possible for her comfort, and to be sure there is no scarring if possible. My last appointment was with the Eye socket plastic surgeon. He was very informative... let me see the CT pictures, and explained everything to me. At least, everything he could. He said that we need to get in with an ENT as quickly as possible, due to it going down her neck, and the possibility of airway issues. She DID have between 98 and 100 % oxygen rates during her sedation, so it is currently not affecting her breathing. He is also getting us in with a pediatric plastic surgeon to get second opinions (or to help form a treatment plan for her) about what to do with the eye, and when. He will personally be making calls to these doctors this morning, and seems confident that he can put together a good team for her. I LIKED him... I think he will be our best advocate right now. The eye is the big concern now, besides the airway. The back of her left eye is completely filled with the blood vessels. It is wrapped around the optical nerve. It is pushing against the bones, causing them to move out to make room for it, since the bones are still soft. This will be a big problem since if the eye socket grows larger to accommodate the vessels, it will be too big for the eyeball when they finally disappear. He said that right now she is too little to do a surgery like that as it would cause some blood loss and she does not have enough blood to afford that, is the impression I got. So Mercy will now have 5 specialists following her care... a dermatologist, an ophthalmologist, the eye socket plastic surgeon, a pediatric plastic surgeon, and an ear/ nose/ throat doctor. It is a bit overwhelming this morning to be facing so many appointments, all over 2.5 hours away. Anyone know anything else we should be thinking about and asking for? Thanks for your prayers. I will keep everyone posted as we find out about this.
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Posted in Mercy Medical
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Mercy's appointment went as well as possible. There is damage to her eye, and they explained that once the eye is pressed it stays that way... a ball of silly putty rather than a rubber ball. The Ophthalmologist (that was my spelling word for the day- I am impressed that I know it now! LOL) is referring us to a specialist in the eye socket (can't remember the official name for him- maybe that will be the next spelling word...), who has arranged a CAT scan for next Wednesday. The following day will be a meeting with all three doctors (ophthalmologist, eye socket dude, and dermatologist), to discuss where we stand with her. I was very impressed with her care. As far as the damage occurred, it will be treatable with therapies such as patching and eye drops, and glasses. We have already gone through that sort of thing with Anna, so that does not "scare" us too badly. The dermatologist put her on prednisone to stop the growth of the vessels, and possibly to reduce it. She feels there is a possibility we will not need the laser surgery, but still that it is probable. I have to get 1 tsp. of prednisone down her twice daily. She won't even take a pacifier without gagging! We are getting the hang of it... last night we got the whole thing in with out throwing up. Our family doctor found a spot on the inside of her mouth (about the size of a pencil eraser) which could be concerning if the meds don't arrest the growth as it could then involve breathing and swallowing difficulties. So we will be watching that closely. I think that of all the possibilities it could be, we had a very good prognosis. I am feeling hopeful that this will not be a lifelong thing, and that we have good doctors involved. I am so thankful for our medical care. A hundred years ago, or even today in a different country, there would be much, much more to worry about.
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Posted in Mercy Medical
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Here is a photo of our precious baby, Mercy. She was born with a hemangioma on her face which has grown rapidly and now has almost closed her ear canal and is causing her eye to bulge. This photo is a couple weeks old, so it is larger now. Please pray as we go to specialists to see what can be done for her. Thanks!
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