It's Been a While

With all that's been going on with Clayton, I just haven't felt up to blogging in a while.  We didn't have any firm answers to his leg problems, and I didn't really have anything to say.  The last few weeks have been very busy, but very productive.

Since my last update, Clayton's knee continued to grow more and more swollen and stiff.  He was unable to walk in the mornings.  After a lot of painful warm up, he would walk with a severe limp until he sat for any amount of time.  Then he'd be back to crawling again.  I felt terrible for him, and Ryan and I recently began to notice some changes in his personality as well.  He's been a little depressed.  He began just laying around most of the day, and he didn't seem to enjoy anything anymore. 

On Wednesday, the 6th of July, Clayton was unusually sore and stiff.  After calling and calling and calling, trying to get some help, I finally broke down and took him to the ER.  I didn't know if there was anything done, but at least it would be noted somewhere that I felt he was in enough pain to be seen in the ER.  I took him to Children's, and they were, as usual, extremely helpful.  The attending doctor made some calls, and got our orthopedic surgery appointment moved up and got us in (eventually, it's a long story) with rheumatology. 

On Wednesday, the 13th we met with an orthopedic surgeon who, as we expected, told us he didn't feel Clayton had an orthopedic injury.  He felt that it was more likely a rheumatology issue.

On Monday, the 18th we met with a pediatric rheumatologist at Children's.  She was wonderful and had already been over all our information (what a concept!).  She had actually already consulted Clayton's cardiologist about all the ins and outs of his HLHS and all the dos and don'ts of medications for him.  Even before examining him, she was pretty sure he had developed juvenile rheumatoid arthritis.  After her exam, she diagnosed him with JRA in the right knee, as well as the the left ankle.  Her normal course of action is a 6 to 8 week ibuprofen regimen, but Clayton is unable to take large amounts of ibuprofen due to his heart meds.  She recommended we move on to the next stage of treatment, which was steroid injections in the affected joints.  In children these are usually done under anesthesia, and she recommended we do it as soon as possible. 

On Friday, the 22nd, we took Clayton to Children's for the injections.  Anesthesia, even for quick, small procedures, is complicated for Clayton's anatomy.  They were ready for him though, and we felt pretty confident.  Things went well, and we were home for lunch.  Clayton did really well.  He was a little bit of a wreck coming out of the anesthsia, but he eventually snapped out of it.  When it was time to leave the hospital I helped him take off his hospital pajama pants.  He saw the band aids on his knee and ankle and angrily said, "Hey, who put those there?"  Apparently he hadn't even realized anything had been done to his joints.

Friday afternoon and evening didn't really bring any changes, but Clayton woke up walking with only a barely noticable limp first thing Saturday morning.  His walking has been great ever since.  He does still have a slight limp at times, but I'm wondering if that's more of a muscle atrophy thing than anything related to the joints.  He hasn't complained about pain once since Saturday.  The swelling is still there, but the doctor said that could take weeks or months to resolve.

The steroid injections usually last somewhere between two and six months.  As long as Clayton doesn't develop arthritis in his fingers or toes, and as long as he has five or less joints affected, we can repeat the injections when needed.  They seem like the most compatible treatment with his heart condition at this time, so that's the plan.  Sometimes these things miraculously go away, sometimes they outgrow them as teens, and sometimes they hang around forever, so we'll just have to wait and see.

I'm so relieved.  I was really worried about Clayton, both physically and mentally.  I am still worried about the future, now that he has half and heart and deteriorating joints, but with Clayton, it's just one day at a time, and for now, he's looking good.