Wednesday, June 25, 2008

Reece Update

Well, my little guy has had a rough time this week. Now that he is on the verge of walking he is in to EVERYTHING. This must have been the cause for what we believe was his first true joint bleed. On Tuesday afternoon I noticed that he wasn't standing/jumping in his crib when I got him up from his nap. When I put him down all he did was crawl on his knees pushing his toys around. When I tried to make him stand, he refused to put any weight on his right foot and was would cry when I touched it. These are all red flags for a joint bleed. By this time I noticed it was almost 3pm and if we can get to the doctor's office before 5pm we can have his factor given there without having to be admitted into the hospital. So, after many apologies to Olivia (she already had her swimsuit on ready to go to the pool) I finally got her to put some shorts on and we all jumped in the car. Poor David had of course left for Washington DC on Tuesday morning not to come home until tomorrow afternoon. I was determined though that I could do this alone. When we got Children's Hospital the doc. office only had 3 nurses that were still there. After about 45 minutes and 6 sticks in his arms, wrists and ankles, none of the nurses could get find a vein that would cooperate. They said that if they couldn't find one, we would have to walk next door to Children's Hospital and get a NICU team to find one. This is when I started to get worried. During this time, thank goodness our amazing doctor's office had taken Olivia to the play room to do arts and crafts while Reece was being worked on. (After it was all said and done, she came home with a potted plant made from tissue paper, 2 painted wooden picture frames, and a get-well card for brother). Back to the needles...just before the nurses gave up the doctor came in and was able to find a vein on his foot. They gave him his factor treatment and sent us home. Whew... glad that was over. He and I were both shaking when we left.
HOWEVER, this morning when we all woke up, I noticed that his poor ankle was swollen again and he still refused to put pressure on it. Uggg, I was so upset. I was determined that Olivia wouldn't miss out on her gymnastics and play date we had scheduled so my wonderful friend Maryann took her to do all her stuff. Mom also met up with them later and took her to see Kungfu Panda. Reece and I went back to the doctors office and luckily they were able to get a great vein on the second stick. They took a factor level test first to check against a second blood sample after his factor treatment to test for an inhibitor. An inhibitor destroys the clotting factor before it has a chance to stop the bleeding. We have also read that it occurs in 15%-20% of patients. Please keep us in your thoughts while we wait on the test results for this. We should know something by early next week. The good news is though, that this afternoon the ankle was back to normal and he was back to his mischievous self. We will keep you all posted as we find out anything.

2 comments:

Alison H. said...

I definitely think of you often! I know you are busy and life is hectic, but I need to call you and catch up soon! We miss you all!

Lilye said...

Reece is in our prayers. Lilye