Saturday, May 29, 2010

Yellow Eye Causes Concern

Kyleigh's Right Eye turns Yellow
Over 6 weeks post surgery from implanting a shunt on the right eye and the shunt has opened and the pressure is down from the 40's to a 2. Good news-right? Well, it is actually too low but no worries says Dr. Freedman as she adjusts her medication and takes her off glaucoma (pressure) drops and keeps her on a steroid but increases the frequency of steroid drops. This is an attempt to bring the pressure to a stable number between 10-14. In the meantime, Kyleigh's eye has starting changing from white (as the left eye) to mild yellow to now a dark yellow. This has caused anxiety not knowing if we should move up her recheck appointment from June 7th to immediately. Thank goodness Dennis' camera worked and was able to capture this picture and a few others. We were able to send them to the doctor and she replied the following:

"What you are seeing is the "going away" of the blood which had accumulated in the space under the transparents surface (conjunctival) tissue of the eye. I suspect there was a hemorrhage there from my antibiotic injection at the end of the surgery, and it can take a very long time to go away, turning all shades of green and yellow as the hemaglobin from the blood is metabolized. Is that conceivable? Did there used to be a bloody spot down there? If it is most yellow at the bottom, but looks otherwise okay (and not so small anymore?) then I am not overly concerned and feel we can wait at least until I return to town."

Phew! We breathe a deep sigh of relief knowing we aren't facing a emergency trip to Duke and that our biggest battle is feeding right now as she is asserting her toddlerness at the table and having sensory overload as her therapist called it today. Thank goodness the therapist was able to come see her today as I have reached my breaking point and was willing to do just bottles until she turned 16--not really but you get my point. Deanna was great and she made me feel less "stupid" and reassured me that it wasn't my fault. I love Kyleigh's therapists because they love her and they truly help her and me through this journey.

Monday, May 24, 2010

Update on Eyes

Kyleigh had her follow up with Duke today. We found out that her eye pump has opened and now the pressure has dropped to a "2". Oops---too low! So we stopped all glaucoma drops for now and focus on steroid drops and creme. Right now everything about the eye looks good for now. She will return in 2 weeks for a recheck.

Sunday, May 23, 2010

Ears, Eyes, and Grandparents

Kyleigh has had a recent double ear infection and bronchitis. Other than fever and change in her eating/sleeping we would not have known to take her to the doctor. She was still pretty playful each day. Thursday my papaw was taken to Forsyth Medical Center for a heart catheter procedure and that evening I picked up Kyleigh to find she was burning with fever and terrible cough. After inhaler, nebulizer treatment and Motrin didn't work we decided a trip to the walk in clinic was in order. Friday I stayed home with her until she was back to happy girl and then our sitter watched her so I could go to the hospital and see my papaw. Turns out he had 3 bad arteries in his heart and two needed to be unblocked by the "roto rooter" procedure because open heart surgery was not an option. This surgery on Friday went very well. However, he took a turn for the worst neurologically. So they transferred him to Thomasville Hospital on Saturday night to be closer to his medical doctors. I spent the night with him and mamaw last night so that my mom could get some rest and in hopes that mamaw would too. At this point we don't know what is in store for papaw, only hoping for the best for him and mamaw.
Kyleigh goes to the eye doctor tomorrow morning to have her shunt rechecked and pressure checked. It would be great news to know that it was opening and her pressure was coming down. Then she will go to the pediatrician to have her ears rechecked.
Otherwise, the family is doing well and we are just hoping to get through the rest of this school year. We are all looking forward to summer and spending time at home.

Saturday, May 1, 2010

And another thing...

So many have asked, "How was the appointments on Wednesday at Duke?". I just wasn't ready to post the answer to that question until now. We took Kyleigh to the GI doctor in reference to increasing her dose of medicine for reflux and to the Cleft Palate Team for a follow-up. What we got instead was two extra appointments and a shocking discussion of surgery. So there you go...another thing for Kyleigh to fight. Basically, Dr. Ulshen feels that Kyleigh has battled reflux long enough. It is causing damage to her esophagus that was already weak. He could only up her medicine by 0.1 mL three times a day. He ordered blood work to make sure they aren't missing any important medical information. He also ordered a GI study to see how her stomach empties out food within an hour. We had that study done on Wednesday while we were already there at Duke. Kyleigh was a trooper. She lay on that table for a complete hour in a papoose strapped contraption while I sang every nursery rhyme and made up songs that didn't exist just to make her happy. We don't have the results of either test as of yet. Basically, Dr. Ulshen said it may be possible to add another med to her routine if these tests show that another medicine is helpful. Otherwise the next step is to surgery repair the esophagus and make it stronger. Huh? What?! Really?! The doc must have noticed my anxiety level skyrocket as he asked, "I'm sorry, but I thought we had discussed this before?". I told him yes in the distant past we had talked about this but I thought she would outgrow the reflux and that today we could just add more medicine to our routine. He mentioned that he understood my hesitation for her to undergo yet another surgery, especially one that comes with so many other risks. He then proceeded to explain how she would have to have a g-tube post surgery as well. What?!?!? A g-tube?!?! For the child we are working so hard to self feed.... oh no way! I begged him to up her dose to the maximum, set us up with feeding consultation and OT, and give us time to see if this would work. He agreed. We headed to get blood drawn and our next appointment with the Cleft Palate team.

The cleft palate team was the OT this time and she was not pleased with Kyleigh's lack of progress with feeding. She felt like along with reflux we are fighting sensory issues in her mouth that could be leading Kyleigh to avoid eating and gag/vomit as well. So she suggested we increase her OT services at school and at home and to at all costs avoid the surgery. She also told me not to worry about keeping her on a bottle because that is her main source of nutrition right now and we need to keep her eating/drinking formula until she progresses.

So, I rode home in the back with Kyleigh mulling over in my head, all that occurred on Wednesday. All I could do was ask God, "Why...?" and inwardly say this is just another thing that we must face. Thank goodness we have friends and family so we aren't facing this challenge alone.

So my friends, that is what happened on Wednesday. May Monday's visit to Duke Eye be less eventful and bring only good news.
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