Sunday, December 26, 2010

Surgery in 3 weeks

So last Wednesday we saw Dr. Vehe (ped rheumatolgist). We talked about Jackson's hernia and the need for surgery. Dr. Vehe wanted the surgery done in between infusions because he doesn't delay or post pone any infusions. However when we had the surgical consultation the next day with the surgeon he seemed to disagree and wanted to wait longer than 2 weeks and said he takes priority over the rheumatolgist. So surgery is set for January 17th! He said that because of Jackson's disease and the meds he takes he is high risk for infection! So I am sooo nervous. The week before surgery we will skip the methotrexate injection to help cut the risk down a little and the remicade infusion will be post poned until 2 weeks after surgery.
We also had a infusion on the 22nd that didn't go so well. I have never been so upset as I was that day! To sum it up without going into detail, Jackson was admitted to the hospital at 1pm and they didn't start the iv until 5pm!!! All I got was lame excuses and I can't wait to tell Dr. Vehe's nurse about the crappy care we got that day!
Jackson has been doing ok except he has had a cold for over 4 weeks now! I am going to take him tomorrow because that just seems too long! I know for a immune suppressed kid it probably isn't but we need him to get well so we don't have to post pone the surgery. Since we are already postponing the infusion by 2 weeks, postponing the surgery would just post pone that too and we just need everything to work out! Easier said then done, lol! He has been rubbing his eyes and knees a lot lately. His knees were red today but not too badly swollen. Mike and I also think that Jackson has gone deaf in his left ear. He had a ear infection in that ear 2 months ago and the infection got better but the fluid hasn't drained. Everytime they check it they say oh its just fluid but we have been down this road before! In 2008 Jackson had quite a few ear infections and fluid that would never go away but the doctors would say it was fine. Then one night his ear drum burst but they still didn't think he needed to be refered to a ENT. Finally I decided to refer him myself and the ENT doctor did a hearing test and he was sooo hard of hearing that his ear drums didn't have any vibrations from sounds at all! When they did surgery to put tubes in he said there was sooo much old fluid in there that he could tell was really old and yucky! They also found his adneoids were very large so they took those out too. After his surgery he didn't have any ear infections until 2 months ago and on Christimas day Mike and I noticed something coming out of Jackson's ear and it was his tube. So after tomorrow if the fluid isn't gone I will be asking for a referal to the ENT again!
Were suppose to see the eye doctor in 2 weeks but since I haven't made the appt yet and they book up pretty fast it might be 3-4 weeks. Next appt with rheumatolgist and infusion will be at end of January because of surgery.

Thursday, December 16, 2010


Oh what a terrible couple of days it has been for Jackson. Yesterday he had a eye appointment at The Childrens Hospital and that came with some bad news. The pressure was coming down but the cells were back in the left eye! So I guess coming off the pred forte and going onto FMX was not a good choice. However Dr. Bothun did not want to go back on pred forte because he thinks that is what was making the pressure go up in his eyes. He really believes Lotamax is the med he needs but our insurance will not pay for it. The pharmacy had previously called and they weren't willing to budge so now Dr. Bothun is writing them a letter. We are scheduled for a iv infusion next Wednesday, however Jackson has had a cough and runny nose for 3 weeks now so I don't know if he will be able to get the iv infusion next week or not.
To make my day worse yesterday when we got home my Grandma and I found a hernia in Jackson's groin area. He has been quite uncomfortable the last few days. Not sure if its due to cold, JRA, or the hernia I don't know. He also hadn't pooped in 2 days which is not normal for him. So I got him into a ped right away this morning. And to confirm my fear they said he is going to need surgery! I am so upset, how much can one little boy have to endure! It just doesn't seem fair especially at 3 years old! It just breaks my heart. So we meet with the surgeon next Thursday and will schedule the surgery shortly after that.
Thanks for checking in!