Hurdles

Kyleigh jumps a hurdle (eye surgery), recovers quickly, just in time to face another hurdle-pneumonia. She has had this cold for quite a while now and as of this past Wednesday it was still just a cold plus she had pink eye. Last night she started running a fever of 102.0 and with Tylenol it only went down a bit before bed time. She went to the doctor this morning and it sounds like pneumonia. Doctor's orders to keep her separate from Kaitlyn, breathing treatments 3 times a day, and Augmentum. If her fever persists come back to the office on Monday or if worsens over the weekend to seek treatment at the hospital. She has been sleeping most of the day. Prayers that she will heal quickly.

Surgery Outcome

Kyleigh did great this past Wednesday during her surgery. She waited very patiently in the pre-surgical area as it was almost 1:30 before they took her back for surgery. Shortly after she was becoming anxious and fussy they provided her a pre-med mixture that calmed her down and brought back her smiles. We weren't sure at first if she was smiling at how goofy mommy looked in the OR outfit or if it was the medicine working but we think it could have been a combination of both events. I was able to accompany her back to the OR for the "monkey gas" that puts her to sleep. She sat in my lap and tried to "lick" the air as the nurse to her "smell the bananas". I guess she was so hungry that she was trying to eat the gas. Because she wouldn't allow the mask on her face completely, some of the gas leaked up my way as I held her and it was slowly taking affect on me as well. Luckily as soon as the nurse escorted me out to fresh air I was able to shake off the feeling of sleepiness. Kyleigh drifted off to sleep and they lay her on the table as I kissed her forehead and went to wait with Dennis. It was so difficult to walk away but I knew she was in good hands with all of the doctors and nurses on board.

It was projected to last an hour and half but it was less than an hour when Dr. Freedman emerged and gave us the good news that Kyleigh did wonderful. Dr. Freedman was able to remove the cataract regrowth material from her eye and fully examine both eyes. Her retinas, optic nerves, and other tissues were intact and looking good. She told us to return Thursday morning for a post-op appointment where they would check the eye incision and pressure.

It was a little past 3 before they came to get me to go back with her in recovery. There are 2 recovery rooms and she has to stay a minimum of 30 minutes in each setting. The first room she is supposed to take clear liquids before being released. However, this time she slept the entire 30 minutes in the first room which is why it took them so long to call me back because they waited until she was waking to come and get me. As soon as I arrived to the room they were ready to move her to stage 2 recovery and offer her some apple juice.

The nurse said her vitals were great and if she would tolerate it she could have apple juice and some crackers. She hadn't tried to speak yet until the nurse went to remove the electrodes and take her temperature she raised up and with a very froggy voice said, "no-no" and laid back down. I guess she was saying leave me alone already. It was cute and she had already won the hearts of all of her nurses by that point. She did great sipping on the juice and taking small bites of graham cracker. Thirty minutes passed quickly and they were ready to discharge us to go home.

Once removing the IV port we started to get her dressed when she leaned over and puked all over my leg. Nice! Poor baby girl was being hit by a wave of nausea from anesthesia for the very first time ever. Given she has had many surgeries and never thrown up before we were a little surprised this time. She continued to vomit as we got her dressed but she handled it so gracefully and her daddy was a big help with leaning her forward and reassuring her she was okay. I tend to freeze up and under-react when my kids vomit so I wasn't much help at all. Since the IV was already out they were unable to give her a dose of Zofran and it would've meant re-inserting an IV to give her nausea meds and we didn't want to put her through that procedure either. Instead, the nurse gave us provisions of buckets, chuck pads, and tissues for the ride home. Dennis rode in the back with her and I drove home. She threw up a few more times and slept as well. It was pitiful.

We arrived home, stripped my clothes and hers as she continued to throw up. I think this was one of the worst parts of the day. She didn't want anything else for a while. She lay on my lap on the couch and chilled for about an hour until her color in her cheeks returned and she was ready for some more juice and crackers. By nightfall she drank some milk and was ready for bed. The other sad part of the day was when we had to place the no-no's on her arms again to prevent her for messing with her eye during the night.

She will continue to wear the eye shield and no-no's in bed for the duration of the weekend to protect her for causing accidental injury to the eye as it heals and the stitches dissolve. She is a trooper though and for the most part has been really great. She is a little clingy and whiny at times but that is to be expected.

Her post-op appointment was Thursday morning at 7:45 am and despite the snow flurries and dusting we all traveled to Duke for this appointment without any trouble. She did great for Dr. Freedman as she gave her eye drops, checked the pressure, did an ultrasound and examined the eye. Everything looked great except her pressure was higher than we like. It was in the 20's and prior to surgery it was 10 or less. So Kyleigh will return next Tuesday for a re-examination and pressure check to see if healing of the eye has helped the pressure to drop. She is also on a round the clock regimen of eye drops including ones for pressure. The doctor is hopeful that the pressure will go down and she will closely monitor to make sure it remains this way. We love Dr. Freedman!

As I type this she is begging for my attention so I will go now and play baby doll with my own sweet baby girl which if I am being honest is not so much a baby anymore. Thanks for all of your prayers and support.

Upcoming Surgery and Update on Girls

Tomorrow at 11:15am Kyleigh will have another eye surgery at Duke Eye Center. She regrew the cataract on her left eye so she must have it removed to allow for sight in this eye to not be hindered further. The surgery itself isn't that difficult but it is the preparation before, the recovery after, and the cloud of possible problems looming over head that causes me anxiety. Kyleigh can not have food after midnight and considering she isn't a big fan of dinner time, the last meal she had was at school today. She can have a sippy cup of milk in the morning if we wake her up at 4:45am and she drinks it by 5am. Then she can only have water or apple juice until 9:15. Our arrival time is not the surgery time so we are not really sure how long it will be before she is actually taken back for the surgery but she is definitely going to be hungry by that point. After surgery, she is usually pretty fussy from waking up out of the anesthesia. Luckily we don't have to spend the night, instead we can come home once she is awake and has drank something substantial. The ride home can be just as difficult if she is no longer drowsy from being put under, her eye hurts, the bandage bothers her, or any number of things. The other part is the risk of surgery on her left eye is glaucoma setting in this eye too. So far she only has glaucoma troubles with her right eye which was the cause of eye surgery last year to place the implant drainage tube (shunt). It would be great to have this surgery go smoothly and the outcome be that her vision is restored and no problems come after the fact.

Other updates...

Kyleigh is talking up a storm lately. Today at school her teachers reported that she finally used a sentence to say, "help me please", when she couldn't get her pear on to her fork. Oh my goodness, that made me so proud that I almost cried. We are working so hard on her using her words to ask for help instead of crying and this is a major step. She also said her teachers names today, "jessie" and "k k" for Kimberly. So proud!

Kaitlyn is doing well in school. She got her report card and it shows that she is improving in her reading. Although she is still behind, most likely related to vision, she is receiving lots of support and high fives from her teachers, therapists and us at home. She is taking more steps to write on her own and have fun with writing. She is becoming more and more confident in her own self. We are are so proud of her too!

Stay tuned...more updates to come soon.