Friday, January 9, 2009

Day 223 - Jan 9, 2009

Gosh, I don't even know where to start. Yes - Kevin's surgery went well - for all intents and purposes. He made it through and we had no problems with him handling the trauma.

However, we had been led to believe that Kevin's head would be symmetrical with the other side and I can't stress enough that that did not happen. He is so incredibly disfigured that we are both still reeling from his appearance.

I was lucky, because I had about 30 seconds of seeing what his head looked like before he saw me coming so I had enough time to get over the shock (just barely) and I was able to mask my thoughts. I was also lucky in that I was only allowed a minute or two with him at that point while they wheeled him into ICU and set him up. This gave me the much needed time to recoil in shock and pretty much lose it.

They called me in and I dried my eyes and plastered a smile on and when I got in there Kevin just kept rubbing the area and looking at me like 'what have they done to me?'. I acted like it was no big deal, but I could clearly see that he was just as upset as I was (and he is going by touch - he has yet to SEE it). So I did end up sitting down with him and telling him that yes, it didn't turn out like we thought it would, but that his hair would grow over it and hide most of it.

But I did cry. I cried a lot last night. And Kevin pulled into himself, which is what he does when he is hurting.

You see, not only is his head sunken in about an inch, creating a large indentation, but one ear is almost an inch below the other and it sticks way out. These are things that should have been fixed then during surgery and I felt like we pulled in to a butcher shop and told them to do whatever. I am so seriously disappointed. One, in the doctors' performances and two, in my decision to have the surgery here. I made a HUGE mistake.

So today I did send a pic of Kevin to our Federal Recovery Coordinator, Mary. She will be 'with us' for the rest of our lives to help us along with Kevin's needs (and she is so wonderful!!). So she took the pic and showed the neurosurgeons at BAMC and left me a VM that states that they all agree that they will not allow Kevin to look like this forever. We are going to call in plastic surgeons and see what kind of repair work can be done.

This was the first moment of relief I have felt since I first set eyes on my son yesterday evening.

And I do want to add that I know the important thing is that Kevin came through the surgery just fine, but it still is a shock to see something that should have been fixed look worse than when it went in for the job.

And now I do need to head back up to the hospital. We are still in ICU because Kev does have some fluid on his brain. They are hoping it is just from the surgery and not the continuation of our fluid problem. We will know tomorrow, I guess...

17 comments:

LISA said...

Leslie,

I am so sorry.

Hang in there..

He made it through the surgery and is still with you..with us. What a blessing.

So thankful for the lady who will be with you forever to watch over you and Kevin. It sounds as though she will see to it that this is taken care of.

Once again...he made it through. Whew..

Now..let's pray that at least this hopefully took care of the horrible fluid problem so he won't continually need to be drained.

STAY STRONG..you're a very strong person.

i. said...

I'm sorry (and pissed) that this facility and the staff have not been the blessing we all believed they could be. However, progress is still being made and for that we must be thankful.

Once it is confirmed that his fluid levels have stabilized, then you can begin planning for the cosmetic work. You can also look for another facility that can give him the appropriate OT/PT without you having to constantly tell them what that is.

Please try to remember that although this is not the perfect outcome we had all wished for, it is a huge step toward Kevin rejoining the world outside full-time.

***HUGS***

Anonymous said...

Leslie,
I'm so glad Kevin made it through the surgery. I emailed you, I hope it's ok.
Kathy

Long-time RN said...

Gosh darn it, I'm sorry to read of this surgical result. No one prepared you and Kevin for this possibilty? That's inexcusable.

Thank God Kevin is doing well. Hope and pray the fluid build-up is an issue that's easly resolved.

Also, hope Mary leads the way for you both.

Keeping your family in our prayers.

Xelaxel said...

mood, everything has a beginning and I'm sure this is the beginning for Kevin, who still has a long way ...

Alison said...

I am glad to hear that Kevin made it through surgery and is awake and all right.

I am not glad to hear that the results are not what you would have liked, but I am glad that Mary and the other neurosurgeons think that they will be able to further correct the damage.

Is the sunken-in appearance due to the flap not being the right size and shaved down during the surgery? If that is the case, then I would definitely see what is up with that. They should be able to make the skull piece flush with the rest of his head. Plastic surgery can easily fix his ear, I'm sure.

Kevin, whatever you do, DON'T GIVE UP. Your mother is not going to just roll over and you will get the help and care you deserve, I'm sure of it.

I'm hoping that things get resolved as soon as they can, and that this fixes the fluid issue so that you can get the heck out of ICU.

Anonymous said...

Leslie,

I am so sorry that the surgery did not come out as expected. I cried reading your post. Your family is in my prayers. Keep the faith, things will turn your way. Please let me know if I can do anything for you or Kevin.
Jenn

Anonymous said...

I've had very limited experience with plastic surgery, but in the little I have had, revisions have been required in each case. Not me personally (even though I had some plastic surgery and a revision). From cleft palate repairs to mastecotomies, it's hard to get it right the first time. Like another reader, I'm sorry that you were prepared for perfection and normal. I'm sorry that you were led to believe that. After the swelling goes done, they can go back in and work on symmetry. In the meantime, let's praise the Lord for His work so far and what we know will happen in the future.

Jan said...

Oh thank goodness the surgery went okay! And thank God once again that Kevin has a mom who is willing to fight for the best for her son.

We all know what can be done with plastic surgery these days so I don't doubt Kevin can get much closer to what he wants. If it hasn't happened the first time, keep pushing, Leslie. Sounds like your Recovery Coordinator is as dedicated as you are, another thing to give thanks for.

This is just another obstacle in the road to recovery but as usual I know that after your night of tears you will pick up and go around it.

Brenda Armsrong~ Clarion PA said...

Leslie...please tell me that they went over the risks and complications of the surgery with you?? If this was a complication you should have know about it! I am hoping that this fixes the fluid issue and then you can deal where ever you would like for the plastic surgery!
God Bless You All!

Anonymous said...

i hope that Kevin has a great recovery from this surgery.He is always in our thoughts and prays back here in the 173rd.
We wish you all the best.
Heather

Anonymous said...

Oh my dear Leslie...

I'm so relieved Kev made it through okay. I know the results were not at all what we had prayed for, but maybe they will come in time with further adjustments, not that we'd like to have them at all but, well, baby steps, right? Maybe this will at least help the fluid situation, and that in itself could be a great benefit. Keep faith, it will okay. *Hugs*

Liz, NY Soldiers' Angel

Patricia said...

Leslie ~ It seems cruel of the medical staff to not have prepared you for the outcome, and unprofessional. And because we all know how thorough you are about wanting to know the details, I am fairly certain they were not as forthwith as they should have been.

That being said, I am thankful that the surgery went well. I pray the fluid is controlled, and I pray the physical recovery is swift.

A special prayer of Thanksgiving for Mary, who will be by you during the rest of his journey in this.

Our thoughts, prayers, love and hugs continue. Always.

Anonymous said...

Oh Leslie, I am so frustrated that our soldiers are being treated like this, after they gave everything they had to give for our country. They should be given the very best our medical professionals have to offer, without hesitation or question. And these arrogant jackasses you're having to deal with need to be asked one question....."Is this how you would treat your loved one; or how you would choose to be treated?" I'm angry for the situation you and your family are in. I will write letters to my senators and congress representatives about it. I will write to anyone I can think of who may have a more powerful voice than I have, and tell them to read your blog. I will ask those "in charge" if they can sleep well at night knowing our soldiers are being given substandard care. God bless you and your family. You're in my thoughts and prayers.

Vicki C said...

Les.. I'm so glad Kevin did okay int he surgery..just sad and bummed at the outcome. I'm so sorry for the disapointment for all of you.. and frustrated that this happened. Praying the other surgeons will be able to help!

Miss Em said...

Kevin and Leslie,

The major part is done. The metal replacement is in place. A new shunt is in place and hopefully begining to work to remove the small amount of fluid that is there as expected.

Kevin, do NOT worry about what the out come of this operation is showing you. There will be ways to surgicially correct this out come. That's why there are plastic surgeons on the Military pay-roll. As soon as the swelling goes down and the area has healed enough then the surgeons will begin the process for continued repair.
**If you need more info, take yourself and your Mom to a plastic surgeon and ask him questions. You WILL BE SURPRISED at what you will learn. And who knows by the time you are ready for the repairs new procedures will have been developed.
Talk to some of the other Soldiers. They will tell you that the Neuro Surgeons have got their job done and now it's up to the plastic surgeons to begin tweeking the results so you will look as close to yourself as they can get you.

Leslie, The Hard Part is now completed and the Beautifying part begins. Don't give into dispair!!!

Both you and Kevin need to stay strong and working in the same direction. Getting Kevin walking and driving his 'Big Blue' m-van out to get Sub-way and Cheese Cake.

Love and Prayers to you both.

Miss Em
Austel, Ga.

Catherine said...

Leslie, I'm sending you all my thoughts and prayers....I'm so heavy hearted right now as I really wanted this surgery to be a good thing for Kevin - and give you both that one step closer to being home. I am so sorry that this has happened to you, I think you should look outside the military medical system and find a Dr. that can fix this and TricAre will pay for that. Sending you and Kevin positive thoughts and prayers! Love ya!