Friday, June 22, 2012

Just tired

I'm back to not sleeping so good. I have so much on my mind. I go to bed at 12-1am and get up at 5-6am...I am sure this will catch up to me sooner than later. I would like to say oh...I'm good on 5 to 6 hours of sleep, but I'm not. I have so much on my mind. Its hard to turn my thoughts off. I'm good when crisis's just the aftermath. Im so tired of talking. me? Yup, my husband would say that's impossible. It's true...I've become a hermit. I used to hate to be in the house. Now I love being here. We all get along so well. My husband and I have our arguments, especially around very difficult times. We try to avoid it but it just can't be can be hard. I am thankful for the man that he is. Just need to be on the same page, he too has a lot on his mind and sometimes we don't always give each other the space nor the time we both deserve.
    I've become a taxi for my daughter, Katie who is enjoying her time at theater...She got the part of Gertie in the musical Oklahoma! I'm so proud of her...this is her 3rd play and she has had 2 principle roles and one lead. Oklahoma! is going to be such a learning experience for her. It's a fun musical and I can see her growing up in front of me and it's very exciting to see where and what she will do. Time has gone by so quickly, it's hard to believe she will be in ninth grade...A Freshman!!! Dad and I keep giving her more room to grow...As we hold our breath...she's doing fine and has a good head on her shoulders. Since we was hard on her for awhile in 6th and 7th grade...a bit lonely but I told her to be's all coming and she realizes this now and is thrilled to be among kids who want to do the same thing. Katie has also realized that she is out of the drama crap at a regular Brick and Mortar school. We kind of missed that part of school and am grateful for it. My daughter is too. She has realized that with no "drama" she is able to focus on school and theater/singing without any negative effects. She is who she is and nothing has changed her.

 Bruces birthday is July 3rd. He will be 11 and he's counting down the days. We got his surfboard and he asked for a pocket watch and fishing poles. There is a big bass in the lake behind our house and he needs a stronger rod to get him. It will be a great celebration for him. He deserves some good times.

 I have been reading up on a book by Dr. Kahn called Ankylosing Spondylitis. I have read it before. It's an amazing book. I am sure that this is what he has only it would be Juvenile Spondylitis... he doesn't have the huge signs on an Xray of this illness except for the very small narrowing in the SI joints but he has all the rest. Amazing! But it concerns me because of his age and how hard it is to control this illness. It's very hard to understand why this is all happening to him at such a young age. There is so much that is hanging over his head. He has a hard time falling asleep sometimes. We are keeping him on 30mg of prednisone for the next week. About every other day he is unable to walk and is very tired and stiff...on the other days he's able to move about but pain and stiffness is still there. The Costochondritis is still there and I am worried it's apart of the Ankylosing Spondylitis. I noticed yesterday that his right shoulder blade is swollen. The book explains that the whole trunk can become inflamed which causes tenderness in the chest and the ribs in the front as well as the ribs attached to the spine...this would mean that his illness is progressing which is very bothersome. AS has the potential to decrease his lung capacity. When he holds his breath his chest hurts. We are doing breathing exercises and exercises from the book which helps to strengthen the the girdle. The book also states that AS in kids will show up in the knees and shoulders with very little swelling and that you will be seronegative which is what Bruce is. I wish that I could find a peeds Dr who specializes in Juvenile Spondylitis. Dr Kahn is in England and would go there to meet with him in a heartbeat! Maybe its a not far off in the future.

 Since we are keeping him on prednisone a call to his Ophthalmologist is in order. He will need to be seen probably next week to check for Glaucoma and optic nerve pressure. Dr.N says this is very worrisome because Bruce needs the prednisone to keep down the inflammation but can't have it due to problems with eyes. So he is in a catch 22...

 That catch 22 is still there for his Ulcerative Colitis/Chrohns. If he gets a UC flare were in trouble. We have put the Colostomy off for awhile...both surgeons at All Children's and Cincinnati Children's said if meds will not do there job because it affects something else then colostomy is sooner than later. The only way to control his UC flare is with IV steroids at 60mg. So Bruce is being checked to see if he has blood and inflammation in his stools monthly. We need to immediately put him in hospital to get it under control quickly.

 There is soo much to think about. Its very hard to keep things going well all at the same time. I'm not sad just wary. We have great days, good days, and bad days...most of them good despite the flare that's raging in Bruce right now. He's exhausted...but pushes to do when he can but tires out within a half hour. We will get past this...but for now I just push ahead and do whatever I can to make things easier. Time for my walk before the rains....a bit of exercise is good for the soul.

Monday, June 18, 2012

Another Flare but So Much More

I took Bruce to Cincinnati Children's Hospital and met with the Gastro, Surgeon and the psychologist there. Bruce got to swallow a pill cam to check out his small intestines and to rule out Crohns Disease which we can't because he tested a little bit positive for it. The pill cam showed no irritation in the small intestines but a blood test showed that he also has some inflammation due to Crohns. Both surgeon and gastro said you can have both. Really? There is a test that will confirm Crohns but there is no test to confirm Ulcerative Colitis. I was very lucky to have both doctors at the same time. Surgeon said that a lot of times the colon is pulled only to have continued pain and inflammation in the small intestines...This is very hard to hear. There is a type of Crohns that doesn't show up on blood tests or when biopsied...but because he tested a little bit positive we are waiting for another flare. We know that Bruce has gastro issues but to try to decipher which one and what were going to do about it remains a question. Bruce still had pain in his gut when we were was going away but it was about a 2 on the pain scale. Gastro was going to put him on Neurotin. It helps with pain in the healing process. Neurotin is given for a lot of different health problems.
 Saw the psychologist who confirmed that Bruce does have some anxiety and that EMDR is very good for him as well as the biofeedback he does. Who wouldnt. Hes been through hell.  He was very quiet but spoke to her when questioned and this Dr said Bruce handled pain head on. He doesn't hold it in. He just deals with it. This was a good way to deal with traumatic events. This just made me's just too much. He took a surgery to remove his colon, wear a bag for 8 weeks as a positive outlook. Accepted it and had mentally prepared himself for what he was about to go through. Only to be swept out from under him and to be told it's not going to happen. You would think he would of been happy but its still looming over his head. It's a very good possibility it will happen in the future. So you cant be completely calm...On anything. Never know when your going to flare, bleed, hurt, not get out of bed. So all these thoughts never go away. That's a lot for  a 10 year old to handle. By the time we left for home Bruces gut pain had subsided and little did I know he was entering the beginnings of an Arthritis flare.
 The day after we got to Cincinnati Bruce started to get stiff. He didnt tell me. I didn't know. I was so focused on the UC/Crohns. He was short tempered. Couldn't sit still, hyper, and angry. I took it all in stride...thought it was the aftermath of what he has been through and the exhaustion of the plane trip. Now my son doesn't get like this. He's very good natured...but he was just hyper and it didn't take much to set him off. Over the weekend my husband and I just thought he's getting his frustrations out.   I sat down with him and he just fell apart. He just cried. No words just a break down. We sat together for a still not getting it...then he told me..."Mom, I've been hurting" and I'm stiff when I wake up in the mornings. Oh he cried. He didn't tell me up in Ohio because he thought he just was doing too much and he knew his Remicade infusion was coming up and was hoping that would take care of the pain and stiffness. This is why he was mad. The following day was Monday and we called Dr Ns office to see if we could up his remicade infusion which he OK'd. We still are at every 3 weeks but at 400mg. Started Bruce back on Celebrex. Didn't help and by Wednesday night he was unable to get up and used his wheelchair full-time. We just ordered him a new wheelchair, the sports kind. He wants to be independent as much as possible so the rigid type wheelchair would make it easier to move. Normally I would see weakness and pain in his girdle, SI joints, knees and shoulders. This was new. His lower spine hurt and he was unable to pull himself up on the wheelchair. When he stood the pain in his knees was just too much. As much as we hated to.. he is back on prednisone, hoping to squash the inflammation. He was able to walk by Friday afternoon only to be let down Saturday afternoon which he was unable to walk again. Needed assistance getting out of bed Sunday morning...but was able to walk by Sunday afternoon. Its a constant roller coaster ride!
 I had taken my daughter Katie to the theater Friday night and my husband called to tell me Bruce had pain in his chest. Tramadol did nothing to help and the pain was gone on Saturday but he was very sore. Late Sunday afternoon the pain returned and thanks to reading up on it was assuming it was Costochondritis. But his left breastbone is a bit swollen? So, his left breastbone and sternum was in pain and it hurt to press down on it. At the bottom of his ribs on his left and right was two indents. It looks odd. I can't confirm that it's Costochondritis until someone looks at it. Bruce was very uncomfortable when he went to bed. He just got up and says it's feeling better. No pain but very sore where his ribs are. He is always so happy in the morning but as the day goes by he's exhausted by late afternoon. He just told me his knees were less stiff as well as his back. After Tuesday we will try to taper. He can't be on prednisone for more than 2 weeks or he will get pressure on his optic we have to watch carefully. it's nice to see him smile. Bruces birthday is July 3rd. He will be 11. I hope he's able to feel better by then. He's getting a surfboard. Bruce has very good balance when not in a flare. It's amazing what water does for him. He will just have to take it slow. He can surf when he feels good. He's an amazing boy. We would like to get him a therapy dog. But he's allergic to dogs. So I need to do my research. Going to look at labradoodles and even sheepdogs. He's not much for friends. He would rather be on his own...he's always been like that. He does his own thing but he wishes he had a dog. I would like to give him that.
 My quiet time is over. It's a Dr appointment for me this morning then take Katie to theater. Katie had an audition last week for Oklahoma! And she made it! It's a very intense 5 week workshop. She will be one of the youngest in the workshop. The musical is in 4weeks! Yeehaw!
 Bruce was taken to ER last night (Tuesday). I was 99.5% sure it was Costochondritis but Im not a Dr...Yesterday he had trouble breathing like he had just finished a sprint and being worried took him to ER. It would be the one time I didnt take him and I would kick myself later.  Heart is fine but has acute Costochondritis...he does have swelling but doctor thinks its due to his arthritis and didnt think it was Tietzes Syndrome.  He was surprised that he is on prednisone and celebrex and still came up with type of pain.  Going to try Neurotin (Gabapentin) to see if it helps.