A Very Long Day in Chicago

We survived! Kya has had a very long day at the hospital today. First of all she did not like not being able to eat or drink since midnight. She usually drinks quite a bit of Gatorade through the night because her medicine makes her thirsty. Since she could not drink last night we were up from about midnight until 4 a.m. wanting something to drink. When she finally fell asleep we had to turn around and get up at 7 a.m. We arrived at the hospital at 7:45 a.m. Kya's first adventure was in radiology where she had to do the swallow test. This was going really well until the radiologist didn't show up in time and by the time she got there Kya was in no mood. She did not want to drink or eat anything they gave her. (Of course everything was covered in Barium!) Finally I took her out of her seat and put the barium in a medicine syringe. We got the radiologist set and when I put the syringe in her mouth she quit screaming and took the barium. They were able to get the photos they needed. But, she was very upset at everyone. She told everyone they were not her friends and that she wanted grandma.

Next, we went upstairs to find the rheumatology department. Once we located it we found out that we could go until 1:00 p.m. We went and grabbed Subway for lunch and Kya fell asleep on the way back to the hotel. She took a good 2 hour nap before her afternoon marathon. We arrived back at the hospital at 12:45 p.m. and were placed immediately in a room and began the process. First Kya was weighed in and measured. Then, she saw Gabby, a member of Dr. Pachman's research team, and we learned about what research is going on and filled out all of her paper work. Then, we went and had microscopic pictures of her nailfold capillaries taken. That is very important in accessing the activity level of the disease. Then we saw one of Dr. Pachman's nurses who asked a few more questions. After that Maria, Dr. Pachman's fellow, came in and did an assessment of Kya's general movement and looked at the progression pictures we had of Kya. After Maria came in we waited a little while and then Dr. Pachman came in. We had a very good visit with Dr. P and she answered many of our questions. Then she evaluated Kya herself.

Dr. P does a very thorough evaluation and really works well with Kya. And believe me Kya was in no mood by the time she came in. The first thing she told her was to go away! But, Kya did very good and worked with Dr. P.

After Dr. P the Physical Therapist came in and then the Occupational Therapist. They had to use bribes to get Kya to participate, but it worked. She will do anything for stickers and Chocolate Chip cookies! After they were done, well Kya was done, Jaque came in. Jaque is a volunteer mom who has a son who is 21 with JDM. He has been being treated by Dr. Pachman since he was 11. She just comes by as parental support and to answer anything on a parent level or just to say "Hey I have been there and it will get better!" Once Jaque was done the nurse came back in with Kya's new prescriptions. Then, she tried to access Kya's port for a blood draw. She was unable to get it to flow so they called phlebotamist to access her port. Carrie came and accessed it on the first try and she had to draw 14 tubes of blood. They were able to leave her port accessed and we went downstairs and had her IV Infusion. We were at the hospital for 12 hours and got everything done that they usually do in 3 days. But, it sure made for a long day!

Kya will have to travel to Chicago at least every three months for a while. Thank you for the many prayers. We can tell they are already being answered! Thank you to everyone for your support. Please continue to pray for safe travels as we will be leaving tomorrow! Also, please pray for continued healing in Kya's disease. Thank you again!

Kalee