Usually after check in you have a small waiting period before being called back. So I decided to feed Kyleigh her morning ritual of oatmeal. She was loving it and we were on bite number 3 when they called her name. Huh?? That was fast. So I manage to gather my child, diaper bag, stuffed Winnie the Pooh, spoon and bowl of oatmeal and follow the nurse. Amazing how she must have thought I had everything under control as the door almost hit me as we passed through and she never once offered to help with anything. One of the first people to really make me not smile so much today.
As she weighs Kyleigh, measures Kyleigh, and starts to take her blood pressure...I see my child raise her little foot to the nurses face as if to say, "smell it". I laughed so hard. It was so cute. She knows her little feet get stinky in socks and shoes and she was being playful with her nurse that evidently was a big ol' grouch and didn't see the humor in Kyleigh at all. Strike Two!
Then we go to another room and wait and Kyleigh finishes her now cold oatmeal but she doesn't seem to mind. A very nice lady came to take us back for the EEG. She is the same nurse that has performed the test on Kyleigh since she was tiny. Kyleigh was an excellent patient. She hugged her Pooh bear and made it light up and sing. She smiled and laughed at the nurse. She only got fussy when the nurse started to pull off the sticky probes. Then, we returned to the other room to wait for the doctor.
Kyleigh danced about the room and was in very good spirits. The doctor came in and said he liked what the EEG showed him today. He listened to her heart from the back and front of her chest. He measured her pulse, checked her toes and fingers for blood circulation, asked me some questions and then gave me the best news ever----
"Mrs. Foster, I don't hear the murmur today and based on the test the hole in her heart may have closed up on its own or is very small. We won't know unless we do an echo but I would like to wait until she is a little older so that we don't have to sedate her. So, how about come back when she is 4 or 5, in two years, otherwise she is looking great to me". I was elated!!! Two year check up--sweet!
So I am now on top of the mountain and my stress level has decreased dramatically. I load up Kyleigh, the bag, the toys and head across the hospital to the eye clinic for our next appointment. We arrive at 10:15. Our appointment was for 10:45 or as soon as we could arrive. From the looks of the waiting room we were in for a long wait. There were so many people and lots of new patients it seemed. Kyleigh sat and ate, she played, she won the heart and smile of our neighbor waiting on the doctor as well. We finally get called back at 11:40 and it was to do the picture cue cards. These cards are large boxes on a gray background and within the boxes are stripes of white and black that start out bold and get fuzzy and closer together as the box decreases in size. They ask Kyleigh to look for the box as they turn it every direction and change the location and size of the box they present her. The doctor first did it with her using both eyes. Then she covered the left eye leaving her to use the right eye (presumably the worst since it has had more surgeries and pressure problems) but she does very well. Then she covers the right eye and has her repeat the cards with presumably the better eye.
Ker..
Pl...
unk....
as my heart falls to the floor. She failed the exam. She can't see at all from the left eye. WHAT??!! Her best eye..she can see that try again I plead. They try again and Kyleigh doesn't respond to the card. They move the cover to the left eye and repeat the right and she can see most of the cards. I don't understand. What does this mean? This doctor tells me that Dr. Freedman will be with me shortly and explain it all but if I would just go back and wait in the waiting room.
GRRRrrrrr...Strike 3!
I am now left feeling confused about my child's vision in a waiting room that I have been in since 10:15 and it is now after 12:15. We wait and wait and wait. Kyleigh eats again and takes some of her bottle. She fusses and squirms now because it is almost 1pm and she is tired. The happy neighbors are getting restless and somehow not as impressed with Kyleigh's cuteness as she now whines and fusses about the sofa wanting so badly to nap and repeatedly says to me "bye-bye mama" as if to say "let's GO".
2pm...we get called back to Dr. Freedman...she looks Kyleigh over. She checks her pressure with the Icare kit and says, "great news..pressure is NORMAL"... I am back up on the mountain and so happy until...she shakes her head (never a good thing). She looks again. She does an ultrasound on both eyes. She asks me to hold her a certain way and she puts on the helmet to look one more time. Dr. Freedman evidently was having trouble seeing Kyleigh's retina at first but didn't want to scare me although I have learned her body language now and knew that something wasn't quite right. She couldn't get Kyleigh's eye to respond with what they call a "red reflex". However, the ultrasound shows everything was okay and her pressures are great.
Dr. Freedman proceeds to tell me that Kyleigh's vision in her left eye is significantly lower. It appears that it has become lazy and the right eye is doing most of the work. Therefore, the solution---patching the right eye.
Noooooooooo...I scream inside my head. We lived the patching with Kaitlyn at this age and it didn't work, it was a nightmare. However, I will do anything to try and avoid surgery and to help my child's vision. Although you are asking me to put in darkness her better eye 1-2 hours per day for the next 6-8 weeks. My heart sinks again.
We leave the eye clinic and head to the cafeteria because my egg breakfast is gone and I'm starving. I am on the brink of tears from pure emotional ups and downs when the cashier completely ignores me and pays closer attention to her friend and a ghetto fabulous bracelet. Meanwhile, I stand in the line with money in hand, small child in my arms, diaper bag dangling, and a tray of food. I could care less that your friend just bought a bracelet. I could care less that you make minimum wage to take my order right now. I want you to pay attention to me. I am not just another worker on my lunch break. I am a mom that has had a trying day at your hospital and I need to get my food and go home. It must have been the way I said to her, "excuse me but would you like me to pay for this food now or after I eat it" that made her decide to ask if I would like some help. Strike Out!
As I scarf down my pizza and choke back the tears Kyleigh wiggles close into my body. I just wanted to sit there and hold her but I knew we had to head home. I started the trek back across the hospital to the parking area in the pouring rain. Kyleigh fell asleep on my shoulder. She didn't even budge when I put her in the seat. She slept the whole way home. I listened to KLOVE and sang and cried both tears of joy and sadness. I am so very thankful that Kyleigh got two praise reports today- heart and pressure. I am so saddened that her vision is getting worse and that we are faced with the battle of patching again.
So although today had many ups and downs like the roller coaster at a theme park, it wasn't the worst day. The ups made me smile and the downward loops gave me a pit in my tummy, but we are going to be just fine. Even tonight Kyleigh proved once again you can't keep that baby down as she grabbed hold to a banana and took a big bite like a big kid for the very first time. I was so proud. She will be just fine..this I know.
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