I know I havent updated in forever, so Im just going to do a copy/paste update from my personal facebook page. As soon as I get time, I will update with pics from Haileys Make A Wish trip, she had an AMAZING time!! Until then, and update from her last rheumatologist appointment. Update from Haileys appointment last week. Im sure you have heard me mention that she has still been having pain, even though its been a month since shes been on the new meds. At her rheum check up last Friday, her range of motion has improved significantly, she only had about 15 degrees in her right wrist, and shes at about 50 now, so thats gotten better. She only has minimal swelling in a couple fingers, and maybe 1 toe. She is showing symptoms that she also has arthritis in her left shoulder, but the doctor couldnt feel any fluid, just a catch. Her knees and ankles still have fluid, but its a large decrease since before starting meds. Is it because she just got joint injections a month ago? Who knows. But something is working. As far as her not being able to walk, she has something called tenosynovitis in her right ankle, which takes longer to clear up. We got a referral to PT again, she needs to work on multiple things, but the rheum thinks PT might help with Haileys kyphosis, along with ROM and core strength. Since she still has some active arthritis, the rheumatologist wants Hailey to stay on her infusions biweekly. We were supposed to drop down to monthly by now, but the rheumatologist wants to wait until she shows more improvement. The nurse that was trying to place Haileys IV was having a hard time finding a vein, so she called the IV team. It was a nightmare. Hailey always finds this superhuman strength when its time for shots or IVs, and in the end, it took Ativan and 5 nurses to hold her down. My nerves were absolutely shot, it took over an hour to get the IV in. Its so hard when she cries out for me to help her, but I have to help hold her down instead. My poor baby was sweating and out of breath, but they got her on the first stick. After all was said and done, the doctor came in and said that we couldnt keep doing this to Hailey every other week. She is emailing cardiology to make sure it is ok, but she will be setting up a date within the next 2 weeks for Hailey to go to the OR to have a permanent port placed. This will help with Haileys anxiety over the meds, and hopefully infusions can go a little smoother. She was still 46 inches tall, but was up to 53 pounds! Shes gaining weight like a pro now!
Posted on: Thu, 22 Jan 2015 01:33:46 +0000
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