Our Boys
Gavin with his brothers
Monday, March 28, 2011
Sunday, March 27, 2011
Surgery cancellation #4
Well, as most of you know...Gavin had his pre-op on Friday the 25th. They tested his eye pressure and his left eye tested at 54! This is way too high! The normal range for eye pressure is 10-20. So, this means that his eye is not well enough for cataract surgery :( This also means we need to worry about Glaucoma. UGH...just what he needs. His eye drops have changed...they added some and stopped some. His oral meds will most likely change...just waiting on his rheumy to decide what to do there. My guess is that she will want us to back off on his steroids. He is on the steroids for his JA (Juvenile Arthritis) and UC (Ulcerative Colitis) but there are always side effects and cataracts and glaucoma are some of those side effects. He is still getting an EUA (Exam Under Anesthesia) on the 4th and she has asked a Glaucoma Specialist to do the exam with her so he can help prevent Gavin's eyes from getting any worse. Don't know when the cataract surgery will be but she has asked a Retina Specialist to assist her with the surgery because of the way it needs to be done. I will keep you updated on how his EUA goes and what his rheumy decides on what to do with his meds. Thank you all for the prayers and kind words! xxooxxoo
Thursday, March 17, 2011
.......
I am having a rough night tonight. I don't know why but this just happens sometimes. Gavin has been doing great but yet I sit here crying...thinking about the future. Praying that Gavin will be healed so he can live a healthy and very long life. Hating that my sweet boy has these diseases. But knowing that he is a very strong boy and will keep fighting.
The next month is going to be busy for us. Gavin has his Remicade, Solu-medrole & IVIG infusions on Thrusday (that is the same day as his class picture so thinking about changing his infusion to the day before. He is a BIG part of his class and I don't want him to be missing from the picture). He will also start his first round of antibiotics to prep him for his cataract surgery. Friday is his pre-op appointment for his cataract surgery. April 2nd we are having his 6th birthday party :) April 4th is his surgery date then post-op the next day. April 7th is his actual birthday. The same day he is scheduled for his Actemra & Solu-medrole infusions. Then the following week is another eye appointment to follow up with his surgery. The week after that is another infusion Remicade, Solu-medrole & IVIG. And so on with the infusions like normal. On the 25th of April we are finally meeting with the Nephrologist...then we will find out what they are seeing on his kidney from the ultrasound...I am so nervous about this!
I guess all of this is starting to hit me and reality of his surgery is becoming just that...a reality! Although I am so excited about finally getting this done...I am just as scared. Gavin has been under anesthesia more times then I can remember but it never gets any easier. Signing that paper everytime before his procedures gives me such anxiety. UGH!
So, please keep Gavin in your prayers for a successful surgery and quick recovery! And please pray that he stays healthy enough before, during and after. We will keep you updated on how he is doing.
Thank you all
XXOOXXOO
Julie
The next month is going to be busy for us. Gavin has his Remicade, Solu-medrole & IVIG infusions on Thrusday (that is the same day as his class picture so thinking about changing his infusion to the day before. He is a BIG part of his class and I don't want him to be missing from the picture). He will also start his first round of antibiotics to prep him for his cataract surgery. Friday is his pre-op appointment for his cataract surgery. April 2nd we are having his 6th birthday party :) April 4th is his surgery date then post-op the next day. April 7th is his actual birthday. The same day he is scheduled for his Actemra & Solu-medrole infusions. Then the following week is another eye appointment to follow up with his surgery. The week after that is another infusion Remicade, Solu-medrole & IVIG. And so on with the infusions like normal. On the 25th of April we are finally meeting with the Nephrologist...then we will find out what they are seeing on his kidney from the ultrasound...I am so nervous about this!
I guess all of this is starting to hit me and reality of his surgery is becoming just that...a reality! Although I am so excited about finally getting this done...I am just as scared. Gavin has been under anesthesia more times then I can remember but it never gets any easier. Signing that paper everytime before his procedures gives me such anxiety. UGH!
So, please keep Gavin in your prayers for a successful surgery and quick recovery! And please pray that he stays healthy enough before, during and after. We will keep you updated on how he is doing.
Thank you all
XXOOXXOO
Julie
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