Surgery is Scheduled

So the girls went for their check up at Duke Eye yesterday morning. We had high hopes that both would have a good check up. However, we also felt that the inevitable was looming about us. The exam began with Kyleigh and they told us her pressure was still very high. Then they examined Kaitlyn and found that her pressure was also very high. I've explained in the past that lower numbers is better. Unfortunately, both girls had readings above 25 yesterday. We like numbers that are 10-15. This meant that the intraocular pressure of the eye could be causing damage to the optic nerve which is the source of vision. Kaitlyn's optic nerve has a small cupping on it that has been there for the past 2 years. It hasn't changed despite the up and down pressure of her eye. So Kaitlyn was given a grace period and we were told to keep having her eyes checked in Greensboro between now and our next visit in July. They tested her vision and there isn't a change since last time. She definitely uses her right eye for the vision. When her right eye is covered she can not see and tests at 20/400. Her right eye tests corrected at 20/50.

Kyleigh's optic nerve however has changed. She has a larger cupping that is being created by the extreme pressure on her eye. In addition, Kyleigh has been having difficulty with her breathing lately. The one eye drop she takes can trigger breathing difficulty in a person that already has asthma. Although she needs this drop to reduce her pressure, she also needs to have better breathing. She will take this eye drop up until one week prior to surgery. In addition, her asthma doctor has ordered that she be placed on a nebulizer treatment twice a day. This aggressive treatment for the asthma should better prepare her for the unavoidable eye surgery.

Dr. Freedman explained that surgically placing a shunt on her eye was the last chance we have at reducing her pressure before permanent damage and blindness occurs. Her surgery is scheduled for April 9th. She will have Dr. Toth the retina specialist surgically remove all fluid from behind her eye first to make room for the shunt device since her eye is so small and the fluid can attach to the shunt if left in there. The retina specialist has to do this procedure to protect the retina from detaching. Then Dr. Freedman will insert the shunt on the back of the eye near the top. Then they will attach a donated sclera as like a band-aid to hold the shunt in place. They will also stitch the shunt closed at first. Her pressure will go down from simply removing the fluid at first. If the shunt starts working immediately then the pressure could go too low too fast and that is another problem. The stitches around the shunt will dissolve by 6 weeks and start working to reduce pressure in the eye. Hopefully, we can then also reduce the need for so many drops too. The goal---save the vision!

I must be honest when I say, I just want my beautiful baby girls to be able to see better and give them the best chances in life. It saddens my heart to know that they have both endured so many surgeries. However, it makes me proud to know that they are both troopers and they rebound so quickly from all obstacles put in their way.

On another note, the nebulizer arrived last night close to 10pm. We waited to give Kyleigh her first treatment this morning. Boy, oh boy, was that a disaster! She hated it! She squirmed, cried, scratched, pulled the mask, pulled the tubing loose, and just plain made it almost impossible. I was dreading her second treatment tonight. Thankfully, we switched scenaries and went to the rocking chair in her bedroom. Kaitlyn followed us and sang and danced to help entertain. Kyleigh lay still and calm the entire time for both treatments lasting almost a total of 40 minutes. AMAZING!!! There must have been people praying because it was completely opposite of what I faced with her this morning.

With a heavy heart but hopeful spirit...until next time.....go hug your children and thank God for them today!