Thursday, June 4, 2009

Treatment #5...

Our sweet little Love had her 5th laser treatment yesterday. I always have the worst feeling about the treatments because they put her to sleep to do them. Granted she is not kept asleep long but when they take her lifeless from me and I have to wait to see her for over an hour...well, it just doesn't sit well with a Momma. Here she is all marked and ready to go...except at this point she still doesn't know what exactly is going on.
Hooked up with her very own dvd player with that is cool. She was loving it here :)
A little while later I take her into the "prep" room and she is given some sedation to make her separation easier and she always knows what happens in this room. This is where she starts getting really clingy and whiny. She now remembers what is up...or at least I think she does. She doesn't even want anything to do with the nurse in this room. She is friendly and all smiles for the rest of them.Here she is trying to come out of it. She has a bit of a hard time. She ends up getting sick right as we are going to be released so she gets some anti-nausea medication in her IV and we wait for her to sleep it off another hour or so. She wakes up in an entirely different mood. She seems like my girl this time.

She must tolerate some liquid in the form of a Popsicle, diluted juice or Gatorade before being discharged.

We had a really good visit with her pediatric dermatologist. We had told him we did not see the big improvement we had seen in the past 4 visits. He had made a comment that that wasn't good. I suppose he was thinking we had gotten as far as we could with her port wine stain.

When he came out to talk to us after the surgery he was all smiles. He seems fairly confident this will be her last treatment on her neck. Which is great. That skin is so thin and sensitive I can't imagine how she tolerates it all so well. He said we have a lot of room to grow in the area across her check and that he was going to start hitting it harder. Last treatment he had bumped in down to 12.5 joules because she blistered the time before at 13. This time he went back to 13 joules and he can switch tools and end up at 20 joules until all options are exhausted. Last time he only used 171 pulses and this time he went crazy and gave her 319. It doesn't look much different to me post-op. He seemed really good about how things went. They used a breathing tube this time and they haven't in the past (I don't think). So he said he was able to really access all the areas very well and he felt more comfortable working longer and did not feel rushed. He always stresses how great it is that we are treating this now. That he has had patients that wait and begin at 10, 12 and 13 and it is too late, he can not get any lightening or decreased thickening. He always makes us feel secure in our choice for Love.

So, she has been like an everyday ordinary child. No whining, no complaining, no problems - I still have no idea how she manages to be so good when it is supposed to feel so bad. The nurse we had in recovery said she has had this done before and it hurts worse than 200 shots. She said it is one of the most painful things to have done...both while doing it and the healing. Goes to show how incredible our little Love is. I like to think the Lord is just giving her what she needs to get through it. She seems to have some super human pain toleration when it comes to this...I choose to believe she is in close contact with The True Healer :)
It always brings me to tears to pray for Love the morning of her surgery and then right before they take her from me. There is something about letting your child walk into a situation you know is painful and uncomfortable. Knowing that your choice has placed her there. I have been struggling a little with whether or not to continue the treatments. After our talk with the Dr. yesterday I am confident he holds her best interest at heart. He has seen the complications first hand with port wine stains that are left untreated. He is also honest enough to tell us...enough is enough and this is the best result we will get. He seemed to hold great hope that the future treatments would be more effective.

Our Love is just such a beautiful little one. I mean truly this daughter of ours has more joy in her pinkie finger than many of us have in our entire body. Her smile will light the room and her laugh is contagious. She is just a doll. And her port wine stain...well, it is exactly how the Lord brought her into our hearts. As selfish as it seems, I sometimes think I am trying to eliminate the very thing that led us to become a family. But, then, I remember the Lord trusted us with this precious little one. He knew we had the opportunity and means to give her the best medical treatment available. This is where we just have faith in that fact. That for us not to pursue what is in her best interest, painful or not, would be almost a form of neglect. Ultimately, all we want is what is going to make her life the richest it can be (not monetarily speaking).

Here she is last night playing on the computer...she is very impressive. The girl has some serious computer skills. The doctor instructed to keep her inside so when the big kids went outside, she got spoiled by Daddy...air hockey and computer time with Dad...can life get any sweeter?

Day 2...looking good :)
Well, she woke up and is in a bit of pain. I have given her Motrin. Her neck is "oww-wee" and seems to be really tender and her throat is hurting, probably from the breathing tube. She struggles to swallow. Poor baby. Off to love my little one up - for her that really is the best medicine :)

1 comment:

Anonymous said...

Well after reading this I have decided to cancel my pitty party for today! I was getting nervous about Monday, but if she can be a soilder and smile about it, then so can I! Thanks little one for teaching me again how God loves and watches over us. Maybe soon you can play in my purse again. I love ya!!!!!---Aunt Jan