Lets Get This Show On The Road

The first picture is of McKenna's original Malformation. That one is now completely gone with a very thin scar in it's place.

The second picture is the one we are working on tomorrow. As you can tell it is about half the size of the first one.

McKenna is healthy so it looks like we will be able to get this show on the road concerning her Lymphatic Malformation.

Monday, Feb. 2nd 2009
1pm- Sclerotherapy
2pm- MRI

This all taking place a Children's Mercy downtown.

She is having Sclerotherapy which is injections into her malformation that are supposed to scar the tissue down. Pray that the sclerosing agent does it's job safely and effectively. We need it to travel from the bigger malformation they are injecting into the smaller ones that branch off of it so she doesn't have to go back for more injections. It could take a few days maybe a week or so before we know the results.

She will have a tube coming out of the malformation that will be connected to a drain that will be draining blood and fluids. This will likely be there for 5 days or so. I have to empty the drain and keep track/log the output. I'm having a hard time wrapping my head around how this is going to work. The first time I was able to safety pin this to her back but she was 6 months old and barely mobile. Now-- well-- she's crazy. I find her on top of the back of the toilet, the sink, the dining room table, the kitchen table, she loves to wrestle and roll around, turn in circles until she gets so dizzy she falls, she is a really restless sleeper too etc.. Suffice it to say, I'm a little anxious about keeping her and that drain intact this time.

Concerning the MRI-- this is an exploratory deal. She was not expected to get another malformation in a different place after we removed the first one. This new location is in the general vicinity of the first one, but not close enough to be obviously connected. There is a condition called "Cystic Lymphangiomatosis" that depending on how it presented could be very serious. It would involve her entire lymph system possibly being malformed. We are not expecting this. The doctor's words about doing further testing were along the lines of- "for peace of mind".

Now just because we get a clean picture this time doesn't mean this condition is completely ruled out, but it goes a long way to showing she doesn't have a severe and perhaps deadly presentation. A child's lymph system is still forming/growing/expanding until roughly the age of 3 years old. So we have another couple years of keeping a close eye on things. The other purpose of this MRI is that we will have a picture of her insides at 19 months old to compare to other pictures in the future if need be . . .

So-- I'm nervous! I'm nervous about her being under anesthesia for possibly up to 3 hours, I'm nervous about the results of the sclerotherapy and I'm nervous about the results of the MRI. And-- I'm totally dreading that moment I hand her to the nurse and we part ways-- possibly with her reaching and crying for me.

However-- I have faith that it will all be okay.

Pray for us!
Love,
Amber

P.S. FYI-- all of the previous entries- to this one- are notes and emails I've written in the past about McKenna's situation. I've put the date they were written in the title.