Monday, March 31, 2008

Orthopedic follow-up

Rough morning.. Or I guess rough night into the morning. Last night Jacob had a very difficult night. It wasn't from the knee pain, but I think from the anxiety of the upcoming day. We slept last night for a bout 1 hour total! Jacob had insomnia! He just couldn't fall asleep until after five this morning! We had leave for Boston at 7:00AM. Some how we made it with time to spare. We went into the orthopedic to have his knee looked at. The orthopedic doctor said that he was healing well. The swelling today actually looked closer to the pre-surfery swelling. His movement of the joint is still very limited. The doctor said the lab report was conclusive to this being only the Juvenile arthritis. I asked him why it looked so strange. He felt as though the arthritis resembled more of something you would see in an older person. Fortuately, the cartilage and bone looked very good. There was just so much excess growth and inflammation of the synovial membrane. I mentioned if he thought that we would have to be very aggressive towards treating this, he said more than likely. The rheumatologist would be able to tell us more next week. The doctor also said that the pathologists were analizing the tissue further for minor possibilities.

After the doctor's visit we decided to stop in school. Jacob was so nervous to go in there. One of the biggest things you read about a child going through a chronic illness, is that they don't want to be different. I was able to get him into the office and the secretary had his teacher and class come into the office to say welcome back. The class was so sweet. They said that they have been missing him and would help him when he came back. The plan is to start him back into school tomorrow. I think we may try to do only half days for the week. Jacob is still a little unsteady and tires easily. I am hoping that he can manage a few hours and have enough focus to get through the lessons. We will see tomorrow.

For now I am hoping he can sleep well. He refused to nap today. I on the otherhand just woke from a 1 1/2 hour nap.
He has to fall asleep tonight I don't know how at 9 he can skip a whole night's sleep!

Friday, March 28, 2008

Rhematologist's call....

I spoke to the rheumatologist today he said he read the report and it said that it was inflammatory arthritis. I never thought I would be so happy to hear it's "just the arthritis". When a biopsy is done your mind worries about the what-ifs. Now we know for sure it's the JRA and we can fight this head on. I wonder now how long he has been in this flare up. For it to get this bad, to need surgery. I honestly have to say that in the last couple of years I have stopped even looking for swollen joints. I thought this was a thing of the past. Anyway, we are moving on.

Jacob is feeling better today. He is at least comfortable while he is laying down. Moving around is a bit difficult. He is swollen from his thigh down to his toes. He is bruising also. We started back on the methotrexate tonight. I am glad for that because it was mainly for his eyes. We are down to the prednisone eye drops 2x a day until Sunday we are down to one! Hope the picture doesn't gross anyone out. I want it in there for my own records...sorry!

Wednesday, March 26, 2008

Surgery is over

Yes, it's finally over! It was a long day yesterday! We arrived in Boston at 7:30 AM. Jacob was very anxious for the surgery, can you blame him? We had to wait around until 9:45 for him to be taken in. I was able to go into the OR with him. Jacob didn't go to sleep to easily. It took a room full of people to hold him down for the gas! The doctor's assured me that he would have "amnesia" and wouldn't remember the struggle. Jacob was in Surgery for about two hours. My nerves were just about shot when the doctor came out to get us. He said the surgery went well. He had a few picture's to show us of what it looked inside. The synovial membrane was extremely overgrown. The tissue looked very strange. It almost looked like a pile of grapes. There were many round pieces of tissue. There were also a lot of "loose bodies" of tissue scattered in the joint. Needless to say it took quite a bit of cleaning out to remove all of the diseased tissue. The orthopedic thought that the tissue didn't look like classic Rheumatoid arthritis. He said that he believes it is, 80% sure because of the past history of him. The tissue was sent out for a biopsy.

We were at the hospital until about 4:00 yesterday. The doctor wasn't sure if they should admit him to the hospital. He felt the pain would be very difficult. Jacob also had trouble with the anesthesia he was vomiting most of the day! And there was NO amnesia from the anesthesia, he remembered everything that happened before he fell asleep!

By the time we got home Jacob was very tired. He was still pretty comfortable from the lidocaine injection. By about 8:00 the fun began! The knee was no longer numb. He had a very difficult night. I think the hospital should of kept him in. I almost in the middle of the night brought him back. He was screaming for hours!

I have kept up with the pain med around the clock since last night. If I keep it up every four hours he's not complaining much! He is such a brave boy!! He is trying to walk around a bit with the crutches too. There is a knee brace on that goes almost the entire length of his leg to immobilize it.

So far so good. Hopefully tonight will go better, I am completely exhausted! I feel like I have been up with a newborn all night.

The follow-up is on Monday with the orthopedic. Oh, I forgot to mention the wonderful and thoughtful get well cards that Jake's class made for him. They are all so sweet they made his day today!

Thursday, March 20, 2008

Visit to the orthopedic doctor

We just came back from the orthopedic doctor in Boston. He is in agreement with the rheumatologist that Jake needs a synovectomy. He says the MRI shows a "mass" of tissue in the knee joint. He says that he isn't totally sure on what's going on. He said it could be one of three things. First, the Juvenile arthritis causing a large amount of tissue growth in the joint, second, the JRA with pieces of cartilage floating around(there is pieces of something in the joint) this he said is seen in old people who have Rheumatoid arthritis!!, or something called Pigmented Villonodular synovitis. This condition can mimic what is going on too. This is not a very common thing at all! The doctor and the rheumatologist are very baffled on what is going on. Frankly, I am extremely worried! The doctor said as soon as he gets in there with the camera he will be able to tell exactly what it is by the looks of it. He is going to biopsy the tissue as well. So, the surgery itself will be arthroscopic and he will be on crutches for a while. He will be out of school for a week or so. Jake already told me that he isn't going to school with the crutches so hopefully he doesn't need them long! Say some prayers for us that all goes well and we finally find out what's going on! I have about had it with the "rare" diagnosis! The JRA was rare, the uveitis is oh, 38 in 100,000 people and these complications extremely rare!

Wednesday, March 19, 2008

two days off anti inflammatory

Master at guitar hero

We stopped the indomethacin two days ago in hopes of the surgery being scheduled soon. Well, Jacob woke up this morning very sore and limping. The orthopedic consult is tomorrow. I can't wait to hear what the doctor has to say.

Monday, March 17, 2008

Picture's of Jacob's knee today

These are picture's I took this morning. I wish I would of taken them when this all started. You can see that the left knee is still swollen. This is after being on anti-inflammatory meds, and Methotrexate for the past 2 months. Four more days for the orthopedic consult!

Thursday, March 13, 2008

Jacob is feeling much better today. His mouth seems to be healing. He started yesterday on the 1 MG of folic acid. Hopefully after he gets his dose of methotrexate tomorrow he won't start with the mouth sores again! Those are so painful!

Wednesday, March 12, 2008

MTX side effects begin

The MTX or Methotrexate side effects are beginning! This past week we had increased to MTX to 17.5 MG'S. We noticed Saturday this time, that Jacob seemed to have lost his appetite. He did not eat too much all day. He confessed to me later in the day that he had a stomach ache. By Sunday he started complaining that had a canker sore in his mouth. I did notice one inside his bottom lip. Monday he was starting to complain even more about his mouth. By today, Tuesday night he was really in a lot of pain. I was able to see he had a least 3 ulcerations in his mouth. I paged the rheumatologist and he said he was going to call in folic acid in the morning which should clear up the ulcers in a couple of days. Jacob is so frustrated with everything going on this week. His knee, especially today, has been really bothersome. It doesn't look as swollen as it did but it seems to be more painful. Tonight he even tripped and fell right on his knee! That didn't help matters! One more week and 2 days until the consult with the orthopedic doctor. I can't wait to see what he has to say about the MRI. I just want something done so Jake can start the healing process. It is just so upsetting to see him in so much pain.

Friday, March 7, 2008

MRI results

Jacob had an MRI Done on Wednesday night. It went well for him. He was very glad to not have the dye injection. Even though the doctor had it on the order the tech said they never use the dye for a knee MRI . The doctor finally called tonight about the results. They were not good. I couldn't understand totally what the doctor was saying. What I did get out of it was that the synovial membrane in the the joint was very swollen. There was excess tissue which accounted for the bleeding when the doctor tried to drain the fluid. The doctor described the joint as very angry. He said that Jacob will need surgery. A procedure called a synovectomy needs to be done. A synovectomy is done with arthroscopic surgery, it removes all of the membrane and diseased tissue. This is going to be done by a Dr. Braun. who is an orthopedic doctor. A consult is scheduled for March 20th.

As for how Jacob is feeling... He still hasn't slowed down. The knee is still bothering him quite a bit. He never says, but I can see how he avoids using whenever possible. The knee still looks very swollen and still hot. I can't believe we have to go another almost 2 weeks for the consult.

As far as the eye drops are going we are down to 5x a day. This Sunday we will drop to four. We have never seen any signs of any eye problems. That is the scary part about the uveitis. By the time we see Dr. Foster on April 3, he will be down to one drop a day. I will be anxious to see if his eyes remained clear.

Tonight, Jacob also started the increased dose of Methotrexate. He is now on 17.5 mgs. Seven little pills tonight! His bloodwork results came back normal today so we were able to start this dose tonight.