December 28, 2007

So, I had written a very positive upbeat status of where Sadie was... it was all about how therapy is going well (despite the fact she doesn't enjoy any of it), but that she was progressing well. I wrote about how she is back in shoes and for the first time in many, many years she is without brace. I wrote about how we as a family realized that for many, many years we have been telling her when in pain to "stop", but for the first time we are telling her to push through and this is why therapy seems so hard on everyone physically and emotionally (at least we have an understanding). I wrote about how excited we were that with such positive progress the therapist was okay with her not doing therapy at Children's twice a week, but once was fine!! I wrote all this with an amazingly happy and hopeful heart. However... it sat and I didn't get a chance to get what was written into this journal before she hit a bump in the road.

On Friday the 21st Sadie went to see the surgeon for her 1 month follow up (really it was 5 weeks, but who's counting). He could not believe that she was walking in without a boot and was feeling no pain and was doing as well as she was! He was so amazed he raised his hands and said "Thank you for the miracle". We discussed the leg difference and the possibility of surgery to correct this in the larger picture (more to come another day). He said he was very happy with her progress and that we should come back in six month - we booked an appointment for JULY! We left soooo happy!!! What an amazing gift to have the surgeon confirm the greatness of her recovery.

On Sunday the 23rd, my grandma noticed that when checking out her "scar" that it didn't really look right (now keep in mind... we just saw the surgeon only two days prior). Sadie had just showered and walks around the house barefoot all the time, so prior to this we had noticed nothing. I went to look, expecting to see nothing really, maybe some redness from her walking that day. Rather what I saw was the center of her outer incision, black and very red and tender. We put some medication and a bandaid over it and then moved on with the day. It wasn't causing Sadie pain unless we touched it, so we left it be. That evening after a dinner at our place with some friends we were looking at it again as it seemed her ankle was more swollen. The "spot" looked even worse and appeared that if we pressed on it we would be able to get some pus out of it. The swelling, redness, the fact it was very tender to the touch and the appearance itself lead Bill and I to decide that a visit to the ER was warranted. So, Sadie and I packed up and headed to Children's ER as our local ER had a four hour wait! We arrived at Children's at 9:30 and were taken right back (quite night in the ER when we arrived). The resident doc looked at it and decided he just wasn’t' sure... he wanted labs and x-rays. The put an IV in case they needed to treat her and in case they wanted to drain anything from her ankle. After HOURS... the labs came back inconclusive... her levels showing fighting infection were elevated, but not dramatically as they would expect if she had an infection. Her inflammatory rates were just a tad elevated too... so basically they weren't sure and didn't feel comfortable saying the swelling was the start of a "flare" verse an infection. They were concerned with the open sore and not sure with no trauma why that would have presented. So, they called the surgeon over the phone. He was obviously surprised as he had just seen Sadie. He sent his ortho resident on call to come look at her. Another hour plus rolled by and he came too look. He felt the same... not sure!!! So, they decided at 2:00 am that she should take some oral antibiotic and keep it wrapped and elevated! At 2:30 they sent us home, but allowed Sadie to keep the IV in as we had to come back for Remicade by 8:00 in the morning.

We got home Monday 24th (Christmas Eve) at 3:00 and both crawled into bed. We got up at 6:30 and crawled back to Children's. Once we arrived there the nurses in the infusion center weren't so comfortable knowing she may or may not have an open infection and called a rheumatology doc to come look at her. So, we waited.... patiently, but on the verge of falling asleep. The rheumatology doc came and looked and decided she felt infusion was fine, but she wanted her to soak her foot three times a day and use an antibiotic ointment... so she gave us that prescription and we then started our day. Because it was Christmas Eve, Bill was able to meet us at Children's and we traded places... I took Syrah home and took about an hour nap and he stayed with Sadie. That evening we were able to celebrate Christmas with my dad's side of the family without skipping a beat (well, I was a tad tired, but had fun none the less).
Christmas Day we were home and had a nice dinner with my mom, brother and sister-in-law. About 6:00 Sadie started to look very flushed and just generally not well. We took her temperature and she had a small fever 99.9. I gave her some Tylenol and she went to bed. When I went to check on her a few hours later... she was at 103 and that was on medication! I of course started to worry that we were talking full on infection and the day after Remicade (remember that is an immune suppressing medication); I was concerned. We discussed waiting to morning to see how she felt.

Morning came (on the 26th now) and she still was running 103 with alternating Tylenol and Aleve; so I called her Rheumatologist. They called right back stating "we want to see her at 3:30"; I responded with no problem! Within 10 minutes they called again and said "actually we would like to see her now"! So off we went again!

The good news... they didn't think it was an infection. Her labs didn't show and increase in numbers since the ER visit and if it was an active infection... they would have jumped. They said she probably has some type of bug and we needed to wait it out. Obviously this is good new. While we were there Sadie's Rheumatologist (who we planned to see on the 31st) came in to see her; I told her we were suppose to come back Monday and she said; lets just to the rest of the exam and then you don’t' need to come back. So, more news followed... her arthritis appears to be in control everywhere right now. The ankle swelling appears to not be in the joint and only time will tell with that, but the rest of her looks great. So, we are reducing the steroid she gets at infusion (huge praise!) and stretching out infusion from every four weeks to every six. This has been tried before and wasn’t successful, but I have huge hope that the New Year is going to be a NEW start for Sadie. This is a huge direction of prayer for those of you who pray for Sadie... that the stretching out of infusion and that the reduction in steroid only affects her in positive ways!
The Rheumatologist asked that we make sure to see the surgeon ASAP to follow up with the ankle. So, we went down to make that appointment before we left. The earliest we could get in was the 11th; so we took it.

Thursday - Sadie still had a consistent fever and felt pretty yuck. Children's called several times to check on her and the surgeons nurse called and advised they wanted to see her sooner than the 11th; so we made an appointment for the 2nd. They want us to keep the 11th for now too.
So, therapy has been on the back burner, but hopefully we will be back to routine by next week. Please pray for healing for Sadie and for rest for our family (as now it's going around us). It has been a long few days with lots of stuff... obviously good came of it, but in the mean time, it was a lot.

I hope that you all have a wonderful New Year and I pray that rather than reflecting on the changes you want for the future, you are able to look back at the year and count your blessings!! I know I have many!!!