Thursday, April 23, 2015

Now what?

PICC line is in for La Petite Belle. She got two units of platelets in her also. 

We were at the doctor's office from 9:00 am to 4:45 pm. It was a long day. A very long day.

While La Petite Belle was receiving her platelets, Beau and I had a long conversation with her doctor. I thought maybe his brain would explode from the amount of questions I was asking him, but nope. He's super amazing! I totally love him and am thankful that we have him. He's a smartie ... definitely what you want in your child's doctor.

I, of course, am ready to get this ball rolling. Come on, people ... let's get a move on! But, unfortunately my urgency as a mother is not felt among everyone else who sees this kinda stuff all day long. It's extremely urgent to me because this is my baby girl here.

So, now we are simply waiting on a phone call from Texas Children's Hospital about everything ... insurance, procedures, and most importantly, our testing.

We have made a slight change in our plans as far as treatment for La Petite Belle after our discussion with the doctor. The first plan and best option is us (Beau, K Belle, or myself) being a perfect donor match for La Petite Belle. We're talking 100% success rate with a perfect match from her immediate family. However, once we start looking at an unrelated match, the success rate drops to 75%. So, now we have opted for immune therapy if none of us are a match for La Petite Belle because that success rate is 80%, which pushes it up to second place. We would look to the unrelated donor only as our third option, which we are praying we won't even get to.

That's where we are right now.

And, right now, we wait. Just waiting on the phone call from the hospital. Just waiting on the test. Just waiting on the results (which take up to 10 days by the way). So, we're still a few weeks away from having answers.

The hardest part of yesterday was when the doctor said La Petite Belle could not be in crowded places or around a lot of people because of her risk of infection being so high unless she wore a face mask. Pretty devastating for a 14-year-old girl. School was already out, but now church is iffy. We did grab some masks on the way out and will play this by ear. Otherwise she's home. Maybe a run to the store or a less populated place, but not the mall on a Saturday unless she wears the mask.

She was very down yesterday, pretty angry and sad about the whole situation. I just cried some more. No matter how much I try not to cry, I still do. La Petite Belle said, "If anyone should be crying it should be me." I laughed through my tears. I said, "I'm crying because I hate this for you and you're my baby girl. That's all."

The only tears she shed yesterday were from some pain she was having with her PICC line toward the evening. It's sore and hurting a bit, but supposed to get better.

Y'all ... she's amazing. I'm totally amazed at the strength this girl has. So brave.

She could care less about the procedures, needles, blood, any of the scary stuff. She only cares about not being able to do the same things all of her friends are doing. I told her this would only be temporary, but temporary for a teenage girl seems like forever.

Now, I need to learn how to flush this PICC line every night and put the Heparin in it, which prevents it from getting a clot in it. I'm terrified of it. The nurse showed me, but still I am overwhelmed. Thank God my mom is a nurse! She's going to come over each night and continue to show us until we feel comfortable to do it ourselves. Thank you, Lord!

The dressing will also need to changed every week. We go back to see the doctor Monday where they will, once again, check her counts and determine what else she needs. Platelets only last 5-7 days so it's possible she will be getting them every week until decisions are made and procedures are scheduled.

That's where we are. We wait. We pray. We believe for a complete healing.

1 Comment:

William F. House said...

Smart plan with familial match, then immunotherapy and then non-familial match. If you haven't talked with an ID doc I'd do that as well just to have someone on board (not sure if your doc is already coordinating that, but I wouldn't want to be treating an immune compromised patient without having ID aware of what was happening).

If you guys need anything or help with clarification of any of this (it's complicated at times), text, call or email.

- Will