Thursday, April 17, 2014

A little less than two weeks to surgery

I'm nervous and I'm anxious as it's less than two weeks until Lexi's surgery. When I look back at this journey that started almost 5 years ago I was really hoping to avoid surgery. We did all the right things and still surgery  seemed to be inevitable. It depresses me to say the least. We followed all of what the doctors told us, we did everything we were supposed to and still have to do surgery. We knew this though from the beginning. We were told the propanolol would help shrink it -because if we wouldn't have had propanolol and the hemangioma would have gotten too large there could be a lot of extra lose skin hanging once the hemangioma went away or shrank on its own or with medication. I have some thoughts on propanolol that I will discuss further on down.

Last week we went for Lexi's post opp appointment with Dr. G. we went over everything and I signed the papers giving the consent for the surgery. A part of me wanted to say "forget it." I know it's just nerves and the thoughts of "what if" You know like "what if we are making the wrong decision?" Six months ago when we were there we decided to give it another 6 months to see what her 'bumpy' did on its own -see if it went away like all the books say its supposed to. But nope. It fact it has changed color a few times and we have seen the size fluctuate. Six months ago I honestly thought "Oh 6 months is a long time away we will be cancelling the surgery date." We made a date for surgery to hold the place but I had hopes we would not be needing it. I so hoped that it would go away on it's own but sadly it did not. So like I thought awhile back: surgery was inevitable. Always go with your gut I guess. Even though in my gut I knew surgery was inevitable I had high hopes and I had to give it a chance to go away on its own. I have to add something here. Thinking back when Alexis was around 7 months old I remember someone said something to me that was so ignorant. (And in using the word "ignorant" I mean the dictionary definition of the word: "lacking in knowledge or training; unlearned") She said "Why don't they just cut it out?" she was a "family" member referring to Lexi's hemangioma. First of all she was obviously "ignorant" as to "hemangiomas" and given where Lexi's is located -well how "ignorant" can you be? Seriously? I remember about a year ago when we met with Lexi's plastic surgeon she said to me "If the hemangioma was located else where we wouldn't even be having this conversation whether or not to remove it." There are different kinds of hemangiomas and no they aren't just a birthmark that can be taken away so easily.  I guess my point is this: educate yourself -especially if you are a family member or a close friend of someone who is going through this, something similar, or ANYTHING for that matter! I cannot stress enough to : Educate yourself!  We tried everything to avoid surgery and most doctors try to do the same especially when its a child involved. So again I ask you to educate yourself on things -it's the best way you can help a family member or close friend. I have to add that one time about a year or so ago I had someone contact me from this blog -she was a stranger to me as I was to her but she contacted me not because she had a child going through this but because she had a family member going through it. She was trying to gather information so that she could help her family member who's child was dealing with a hemangioma. I thought that was so awesome of her to be doing!

Anyway moving on.....

The doctor explained that she may not be able to get the entire hemangioma depending on how large it is. If it's real large and she takes the whole thing then there will be sagging skin left behind. So she might only be able to take a section of it. As standard procedure it will be sent to pathology for testing to make sure it was indeed a hemangioma. The doctor explained where she would be putting the cut so that a scar  should be hidden well. Since it's by her eye it will be around her eyebrow. She will have to have 6 weeks of "easy play" and not be in the sun very much. This shall be interesting since Alexis is a very crazy energetic 4 year old that has been stuck in the house for what feels like a year of winter. (yes here in the western part of good old Pennsylvania)

So here are my current thoughts on propanolol: I now have mixed feelings on propanolol. I often feel like it stopped the natural growth process of the hemangioma and that's why we are now dealing with this. I don't know -I could be wrong but our pediatrician has even mentioned this theory. We are also having some behavioral issues with Alexis. For those of you who are reading this because you are wondering if you should try propanolol or are already using it --don't read that last statement and be alarmed. I am not saying that propanolol did cause these behavioral issues -I'm just stating we don't know. From the very beginning people have said that we would never know what long term affects (if any) propanolol would have on babies. If I could go back and do it all over again, would I? Yes. It is what Alexis needed at 'that' time. At the time we started treatment her hemangioma had grown large so quickly something had to be done especially because it was located above her eye. Maybe I am contradicting myself and sure I probably am but this is where I stand now -just some mixed feelings on it. Please remember every single situation is different and unique.

I'm going to include a few pictures today. As some of you who have been following this blog may have noticed I removed most if not all of my pictures from this blog. I am going to include a few now. (but I cannot promise how long they will stay up)

I realize this is not the best pictures and I do have larger/better pictures but I choose to not share them on the Internet. This one was taken at Children hospital right before her first treatment of propanolol. I know it's hard to tell from the picture but her "bumpy" was very large with lots of color.

This picture below was taken over a year later. Yes I have earlier pictures of the process but I don't have access to all of them at the moment. I pulled this one out of my folder on my PC that I have been sharing with her plastic surgeon over the last year. As you can see her bumpy was flat here and barely noticeable.

Still flat in picture below:

Today's picture. Today her "bumpy" is having a good day. This is actually looking good compared to what it looks like on other days. Of course it fluctuates with blood pressure since it has "blood flow." Obviously when she is sick or upset we notice it's much larger. 

Of course not one doctor has "explained" why it is getting larger or if they can say that it's actually growing or not (or if it's the swelling up & down)  However I did talk with an expert online through the website who after looking at pictures and talking with me felt that her type of hemangioma was one that would never go away. Which that goes in suite with a doctor who did her ultrasound. He explained to me that some hemangiomas are the type that never go away. The other explanation we got was that maybe we stunted the growth phase when we used propanolol. 

So here we are two weeks away from surgery and I guess I'm just sitting here reflecting back on the past 5 years. I do not feel confident enough to say that our journey is now over (I've said that before) So I will just leave it here and come back after the surgery and update. 

Any questions feel free to contact me at:
This is not my "good" email because I will not put that on the Internet because of those lovely spammers! Anyway I do not check this email very often but please be patient I will get back to you when I can. 

Close friends & family: You know how to reach me :-)

As always thoughts and prayers are appreciated for the upcoming surgery. Thanks again to all of you who follow this journey right a long with us. 

Happy Easter Everyone! 

1 comment:

  1. Bless her heart , hope you feel better real soon Lexi . have a wonderful week-end Bish family .