Surgery update

Jacob's surgery has now been moved up to September 2nd. The ENT in Boston ants to get this done because he is getting progressively worse. Unfortunately this is his first day of school! I am glad though that he is going to get this done sooner rather than later. The poor kid sounds awful. I am anxious to find out what is causing all of this. His tonsils will be biopsied and hopefully give us some answers on why this is happening. There are a number of things that can be causing this. We have ruled out mono and strep issues. Tomorrow he is having an EKG to be sure all is well for the anesthesia, and a chest xray to see if anything related shows up there.

surgery date

I just heard from the hospital, surgery is scheduled for September 8th. I am glad Jacob will be able to go to the first two days of school. Then he will miss the next two weeks!!

I don't think we are going to go to the arthritis walk now due to this. This year with everything going on with him and life in general, I haven't been able to get going on the fundraising anyway. I feel terrible. Next year for sure we will have to make up for it. Right now we are going to concentrate on getting him healthy!

I will post after his surgery and let you all know how he is doing.

Thanks for your prayers for him.

Preparing for surgery..again

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We were able to get into see the Pediatric ENT at Tufts Floating Hospital in Boston today. We got the news we were expecting to hear. Jacob needs surgery. He needs his tonsils out. I think this is definitely for the best now. He is not getting any better. His tonsils as well as his lymph nodes are swollen. Jacob also let the doctor look into his throat with a camera today and the doctor said he has some regrowth of his adenoids as well. Jacob had his adenoids removed when he was one. Lucky him, he gets to have them removed for a second time. The camera also shows that he has a deviated septum as well.

The surgery is going to be scheduled within the next couple of weeks, whenever we can get clearance from the rheumatologist for how long he needs to be off his immune suppressants. We have to be extra careful in doing this surgery on him because of the risks his meds bring. He will have to be admitted for the night at the hospital to be watched for bleeding.

We should know by Wednesday when the surgery will be. Next week school starts, bad timing! The doctor said he will have to be out of school for at least 10 days following the surgery. He will have to stay off his arthritis meds for a while after surgery too. I pray that this will not cause a flare up!

End of summer vacation

How cute is he? Who can believe summer vacation is ending! The kids go back to school on September 2. Jacob will be going into 5th grade this year. He is going to a new school. He is getting pretty excited! I, am a little nervous for the change for him.

I know that we are very lucky Jacob's arthritis has been generally very mild. (If you forget the huge knee surgery he needed for the very advanced arthritis in his knee.) He has been well controlled in general now. I read a lot on the Juvenile arthritis message boards and I see many of the kids are not so lucky. There are kids who suffer daily with pain from this disease. I pray that Jacob keeps on responding to the medications and doesn't go down that route again. In case he does though, I want the school to be prepared. I want the school to be informed ahead of time so if something pops up they will understand his limitations.

Oh, a tonsil update: We are still waiting for a consult at the hospital in Boston. Jacob just finished a week of steroids and another 10 days of an antibiotic this past weekend. Guess what happened? Within a few days his tonsils swelled huge and he is struggling to eat and talk again! I am probably going to call the pedi tomorrow and have him seen to probably start him on another round of steroids. Ah yes September 17th can't come quick enough. Speaking of school issues, surgery in the first month of it might be a problem.

uveitis website

http://gabriellesvision.org This is another great site for uveitis info. There is a section that has other children's stories. Jacob is listed in the section too! Check out the site.
Please watch the wonderful video too!

rheumatology appointment

Today Jacob had his routine rheumatology appointment. I am happy to say all good reports today! His joints looked wonderful! Actually even better than usual because he has been on steroids for the past week for his tonsils. Almost every joint was perfect. His left knee still has a little limitation to it, but nothing to stress over. He feels great and looks great!!

While we were there today we discussed the ongoing tonsil issue. Jacob has been on the prednisone for the past week and also on Augmentin. His tonsils looked pretty good today. The meds seem to be helping. A few weeks ago when he was originally placed on Augmentin, he seemed to improve. Two days off of the antibiotic his tonsils were back to square one. I don' t know if the steroids maybe did the trick now or what. He will be off both meds in a few days so time will tell.

The rheumatologist would still like Jacob to be looked at by the ENT, at the hospital in Boston. He is scheduled there on September 17th. She feels as though we need to be sure if he really needs them out. He is a high risk for surgery due to him being immune suppressed. He would need to be off his arthritis meds for at least a few weeks during the surgery time. This would risk a flare up.

I also asked the doctor about the new warnings on the TNF inhibitors. The Humira specifically. The chances of malignancy from these meds is very minimal. The reality of it is that these drugs have been a miracle to say the least for so many kids. It is a risk but the benefit definitely outways the risk. The Humira is saving my son's vision. I think of what would of happened if it wasn't for this med. Uveitis is such a serious disease that still blinds people to this day.

As I said time will tell what is going to happen with his tonsils. For right now we will enjoy the last few weeks of summer vacation!

tonsils..

Never a dull moment... For about the last month or so ago, I have noticed that Jacob has been sounding a little stuffy. His voice sounded a little different. Off and on , he had been having issues eating. He would choke occasionally on food. About two weeks ago he started to sound really bad. I looked into his throat and saw his tonsils were huge!! I called the pediatrician. His dad took him in the the pedi and the doctor was worried about his airway closing. HE was almost going to admit him into the hospital but the local ENT agreed to see him right away. The ENT decided to try to put Jacob on Augmentin for 10 days and have him back to recheck.

This past Wednesday I took him back for the recheck. Jacob still didn't sound very good. The ENT is thinking at this point it would be a good idea to have his tonsils removed. We decided it would be best if he was to go to Boston to have his surgery. The office tried to set up the consultation at the hospital but the PEDI ENT was on vacation until next Tuesday.

Tonight, Friday night, Jacob seems to have gotten worse. He was choking on even soft foods. I called the ENT back and he put him on Augmentin again and also prednisone. The doctor didn't think the pred would do much but it is worth a try because he is having so much trouble right now.

So we wait to hear back for a date for the consultation in Boston.

Two weeks ago I received a call from Nesse, who works at the Massachusetts Arthritis foundation. She called us to let us know she had tickets to a Minor League baseball game. The team The Lowell Spinner's play close by to us. I took Andrew and Jacob to the game. We had such a great time! I thought for sure the game would be rained out because it was drizzling when we got there, but the weather cleared just in time! These are a few pictures from the game. Thanks again to Nesse at the Arthritis foundation for thinking of us!