Wednesday, February 11, 2009

An update on healing. It has been over a year!!


Wow, as I prepare to write this email I reflect on all that has occured in this last year for my wonderful son, Mattie. He is a precious gift from our Father. I am amazed at all we have learned and gone through from this experience.....

I was dissapointed by the visit today in a few ways. The doctor that we had with the surgery is no longer there and a new doctor was in his place. Dr. Kline was really blunt about the scaring on Mattie's body. He said that it is what it is pretty much, with minor changes in time. I was hoping for more positive words than that. I knew that he would have scaring but his donar spot, right leg and arm are still very off colored among other words to describe the appearance. I am not big on appearance but I do not want my child to have all this scaring for the remainder of his life! I always thought some scaring is ok to be reminded of God's protection in his life, though.....

I spoke to him a bit about his hip (he has an excessive amount of scar tissue there that was healthy skin grown over) and he said he would not consider surgery at least for another year. He is concerned about his ability to heal since he could not sit still for the appointment. I know my child, he has always had a lot of energy (go figure, I am the one he gets it from!) and even though in time he will be calmer he will always be ACTIVE!


I spoke to the nurse after he left about getting a referal to a different doctor but at Harbor view he is the only specialist in this field. She said I would have to have our family doctor give he a referal to another hospital. Though I hate looking outside of Harborview, I really need to seek out a second opinion on this matter since this surgery could posibly be done in two stages with the thick amount of skin that needs to be removed. It could take up to one year of healing to occur after each surgery. I would like to do the surgery while he is younger, as it would have less memories of it happening as well as the fact that it will slow down his abilities to be in sports and other activities while it is healing. I need to share my opionion with a doctor that is willing to listen to me and give me some wise counsel not make the decision for me! Gosh darn it!!

Good bye arm garment! We will need to cover his arm with sunscreen to avoid harmful sun rays. It makes me a bit nervous for him as he is not shy and will show his arm to anyone. I am just not sure about showing it as it is hard to look at still and will lead to questions from strangers who do not know our story. So far he has not wanted to take it off after the nurse and I told him it can come off, he is very attached to it. I figure there is no harm in wearing it a bit more so when he is ready it will come off and stay off.

I guess it has been a hard day cause I had hoped to have more answers and left feeling like I have more questions. I am not sure if any or all of this makes much sence as I am tired and have a lot to do tonight and it is already 11 pm!!! I will let you know more as I know.....
Thanks for all the thoughts and prayers!

p.s. we did get to see Hector, our favorite hospital chef! He always makes Mattie and I smile!

4 comments:

Unknown said...

Gosh, i don't know what to say. I am sorry. I was hoping for better results as well. Thanks for sharing your heart and I will continue to keep you all in my prayers. God will direct you and guide your decisions. You are a strong mom. Mattie is blessed to have you as his mommy!!!

Marion said...

I agree with Suzanne, Heidi: You are a strong mom and amazing woman!
And you are absolutely right about the second opinion!!!! I encourage you to persue that approach and seek out a Specialist who will first listen and then discuss options. When Daniel was born he lost a lot of weight at first in the hospital but slowly started to come around. Still, the hospital pediatrician was absolutely convinced Daniel needed to stay longer than his twin sister. We fought him all the way, knowing in our hearts that our little baby boy would be much better off at home! In the end we succeeded, took Daniel home where he started to gain weight right away. Our own Pediatrician couldn't understand the other Doctor's opinion at all.

Follow your "gut feeling" on this one , Heidi. This is your son and his future and one thing is for sure: One Doctor doesn't always know it all!

I'll keep praying for you!

Pure Mommy Extract said...

Thanks for the update Heidi. I hope you get some better information soon.

Vicky said...

Thanks for the update!

Have you considered checking with Children's Hospital in Seattle or Mary Bridge in Tacoma? My sister had mentioned Children's last year when you were in Harborview (she works for Children's). They may be more understanding of him being an active kid and also that it should be done earlier in life. Hopefully your pediatrician will have some ideas.

As far as people seeing his arm... I haven't seen it, but I'd say most people won't be bothered. Especially if it doesn't bother him. If he's like, "Hey stranger, Look!" and all excited and eager to tell people about how God healed him, then people will be excited with him.

Love,
Vicky

PS-- I'm glad you got to see Hector :) He was awesome the time I met him!