On Monday I noticed that Lauren wasn't using her right arm much (the arm with the new line) and that her bicep was swollen and very painful with a red line going up it. A trip to the Valerie Center the next day confirmed that she had developed phlebitis in that arm. It was not yet far enough up the arm to have to pull the line but it was close. They decided to treat the phlebitis and try to save the line but told me that if it progressed upward another inch it would have to be pulled immediately. So Lauren was started on Advil every 6 hours and we increased the heat compresses from 4 times a day to as often as possible. Within 24 hours there was a noticeable improvement and as of yesterday all the swelling is down and she'll even let us touch it. The phlebitis is still there (the vein feels like a thick cord) but at least it's being kept in check. We'll just have to keep watching it closely.
Lauren finished up her IV antibiotics on Wednesday so on Thursday we made another trip to the Valerie Center for a followup blood culture. Lauren slept through the whole visit. Then we went across the street for a checkup with the eye doctor. I told her that I thought Lauren's eyes were getting worse again, crossing more and more even though she has been excellent in wearing her glasses. Well she confirmed what I had thought and said her eyes are back to where they were before she had the eye surgery (which was exactly 1 year ago).
So it looks like Lauren will have to have another surgery but before we decide for sure the doctor wants to check her again when we get back from Sloan.
Today was another trip to Morristown, this time to the orthopedic for a checkup on Lauren's back. When we were there at the end of March the doctor noted that there were already some changes in her spine. We repeated the xrays today and were told that the scoliosis (side to side (lateral) curve) seems stable right now but the kyphosis (forward curve) has progressed a little. The doctor said that since Lauren looks so good clinically he doesn't want to use a brace yet. He wants to check her again in 4 months time and see where things are then. I talked to him about my concerns with Lauren's weak muscles (abdominal & legs) and that she was a little behind in her gross motor skills. He agreed that she could use a little help with this so he wants her to do PT twice a week for at least 12 weeks. Besides working on her abs and legs he wants her to do exercises to strengthen her spine in the hopes that it will help the kyphosis. He referred us to a physical therapist that specializes in pediatrics and Lauren will start with her when we finish with antibodies and scans at Sloan. Her evaluation & first session is scheduled for Aug 3rd.
On Sunday we'll be heading back to NYC to check in at the RMH. Lauren and I will head to the clinic bright & early Monday morning to start Round 5 of antibodies. Lauren is looking forward to the trip and can't wait to see her friends there. With any luck this could hopefully be our last round.
One last note... A big Thank you to all the patrons of Murphy's Bar, in Long Branch NJ, They set up a "curse" jar on the bar and anyone caught saying a "naughty" word had to put a quarter in the jar. Let me tell you, there must have been a lot of "naughty" words!! Thanks a bunch guys!
As always, Thanks for checking in on us and for all the continued prayers!
