|While driving to St. Louis Mack wanted his sunglasses and binoculars. I kept seeing him in the rear view mirror checking things out through his binoculars.|
That is the date that will change us to where we were over a year ago. It's a date that will need to be celebrated!
It's the day Mack will get to jump in a pool! His Central Line (aka tubie (a central line is a line they inserted into a central vein. It saved Mack from having an IV)) will be removed. I'm grateful for this tubie. This tubie has been a saving grace when you have a two year old who is dependent on transfusion. He couldn't even make it a week without getting platelets or blood. June was his last transfusion. His platelets are not great (52,000 (normal 200,000)), but he is steady. The only reason it's still in, is for drawing blood and giving one of his medications...or worse if something happened to him.
|These two are so close. They are 6 months apart. Gretchen calls him her Mack!|
Tuesday night, Mack and I headed to St. Louis for his appointment on Wednesday morning. We were greeted by our normal greeting crew-my family! My brother, sister in law, parents and nieces were all waiting to have dinner with us. I love that feeling of coming home to all of them. The next morning I got up and ran (in freezing cold 8 degree weather) thinking about all my hopes for Mack's appointment. When I got home in the morning he was still asleep-I curled back in with him and he snuggled up. I love this time with just the two of us!
After a slow morning we headed to the hospital. It's crazy that we know all the nurses and faces around. They are renovating the floor so that patients will hopefully have their own room! That would be great for the families that are there a long time.
Everyone was commenting on how big Mack has gotten and that his RED hair is changing back to blond. Crazy medicine changed it during his real sick times.
Then Doctor Wilson came in and said... YES to getting his tubie out. It happened fast. This is something we hopped for, but his platelets were very low. The risk of infection is greater the longer it's left in and Mack has had it in for a year. He will get blood drawn every month and we will try his one medicine orally.
I know this doesn't mean he's better or he's suddenly not sick. It means we can enjoy this summer! Our family is a boating, swimming, all sorts of outside fun kind of family!
One comment the doctor did make was he might not want it out... What? Heck yeah he will!! Then on the ride home he said, "mommy be quite." as I was talking about it. My first reaction was to explain how rude that was, but then I heard him quietly say, "I don't want my tubie out." The doctor explained kids get possessive over their tubie-it's what has saved them-it's what has stopped all the needles going in. UGG. Not sure how to build it up. He will have to be put under and that is hard for us to send him off. I bought a calendar today so we can count down the days...we will see how that works.
I'm going to love this day and be frighten. I'm going to LOVE every second of this summer when all three of my kids can enjoy the pool. We are spending every second we have there!!!!! But I'm also going to be frighten he relapses. What if he gets sicker? It's always going to be a fear, so it's time to move on!
We are kicking Hepatitis Associate Aplastic Anemia's Butt everyday!