Friday, March 26, 2010

Post Surgery

Sorry I didn't update sooner. Today was uneventful- the first uneventful day since all this started.

Merikalyn's surgery went very well. She went in at 2pm. It took about an hour for them to prep her, and surgery officially started around 3pm. We received updates about every two hours, which was wonderful. I expected time to drag by, but it actually flew by. We had visitors most of the time, starting out with my husband's mother and friends and our two little boys, Nolyn and Keagan. They left after a bit and headed back to Louisiana (taking the boys with them so they wouldn't be bounced around from place to place). My Granny came (my Dad's Mom), and she, Brandon, and I all had burgers in the cafeteria (they have awesome burgers). When we returned to the surgery waiting room, we had one of Brandon's bosses waiting there for us! Scott is very friendly and outgoing, and he definitely helped the time pass quickly!

Of course, after every update, Brandon, myself, and my dad had to make a few calls to different people to keep them updated on the situation.

Halfway into the surgery they sent a few pieces of the mass to the pathology lab. Pre-surgery, they were pretty positive that it was a tumor and were just waiting to find out what sort of tumor it was. During the surgery, they found that the mass was about the same color and texture as the healthy tissue, so they had to go by coordinates from the MRI to remove it. (They knew it wasn't the healthy tissue because, in the MRI, it's a different density.) They saw the sagging on the left side of her face improve immediately during surgery, which is awesome.

However, they had NO idea what this mass is- even after the "quickie tests" from the pathology. This is not good or bad news. It's just.. not news at all, really. It could still be a tumor, or it could be an infection, or a number of other things. They hope to be able to give us a full report Monday night or some time on Tuesday.

I asked the Neuro if he had seen anything like it, and he made the comment he had seen something similar and it turned out to be MS, but he doesn't think this is MS for several reasons (which I have forgotten, so forgive me).

She had another MRI yesterday to see how much of the mass was left. A third of the mass remains. Depending on what the mass is and what sort of treatment is required, they may not have to perform surgery again. (Btw, this surgery is called a craniotomy.)

We are hoping they won't have to, as the recovery is very difficult on all of us. Merikalyn has not done much smiling today, even though she received a bunch of wonderful gifts from family and friends.

Today's day shift nurse was a total dud, which definitely didn't help things. My husband told the night shift nurse about her (this night shift nurse is wonderful!) and she said she would report it and make sure we didn't receive her again.

I often wonder why people with no cheer or personality do jobs like this. These children (and their families) NEED a positive, upbeat spirit.

Our Neuro stopped in and was flabbergasted by her neglect. (Merika didn't receive any breakfast and hadn't received the pain medication we asked for hours previous.) Numerous times we had to have her paged and she didn't come for 45 minutes or more... even when it was a serious ordeal (Merika became very nauseated and began heaving).

We are hoping tomorrow will be better for Merikalyn. We miss her smile and her laughter. My sister-in-law hung out with us all day today, which was really nice. It can get rather boring around here (earlier, when I mentioned this, my husband said, "WELL THAAANKS! I see how you feel about me!" Ha!).

A woman from our church came by with a bunch of handmade cards and a big banner from the kids in the Awana group (it's a fun little "club" they do on Wednesday night).

I often wish I could see all the people who are praying for us. News has spread so quickly and we have received emails and messages from people we don't even know telling us how Merikalyn's life touched them in some way. Our friend told us that there is a church in Africa praying for us!

I am just amazed by the amount of support we have, and SO thankful for it. I don't know how people make it through without it. We have really been able to stay upbeat and positive, and I'm not sure we could do that if we didn't have so much love flowing our way!

One of my cousin's little daughters (Brianna) wanted to do something special for Merika. She knew Merikalyn loves the Disney Princesses, so she wanted to send Merika her Belle costume (from Beauty and the Beast- which comes with a purse and wig!). It was one of the sweetest things.. and she sent her a dollar too. :) SOOOO sweet and thoughtful. It made me tear up for sure! My grandma found out about this before we received it and bought her a Belle barbie doll to match!

I cannot wait until she is better and feels like playing with her toys. Although I could see twinges of thankfulness, I wonder if she will be surprised all over again at the things she's received when she's more alert.

The boys are doing extremely well in Louisiana. We talked to them on the phone today and Keagan jabbered on and on. He told me, "Yi wub yew!" and "Miff you Mommy!" Nolyn always sounds so grown up on the phone, but he has an unusually deep voice to begin with. We also got to speak with our nephew Hunter. They are having so much fun at MawMaw's and I hear she is weaning Keagan from his pacifier (which we have slowly been doing) and may try to potty train him while he is there (oh man, that would be nice...). We all miss Nolyn and Keagan... and wish they could be here, but we know that they are in good hands with MawMaw and PawPaw!

Our doggy is being taken care of in Louisiana as well with our friends John and Ashley. I hope she is behaving!

Brandon and I are doing good. People keep telling us we are so strong, but I just don't see it that way. We really have a peace about the situation because we know God is in control. We also know that prayer is powerful and we have hundreds of people praying for us. We have been able to see glimpses of how God has used this situation in our lives and the lives of others (friends, family, and even strangers) and it has been amazing. When it comes down to it, we're not here on this earth to live long, healthy lives. We are here to bring glory to God.

I look back over the last few weeks and feel so bad for how I treated Merikalyn. Previous to the seizures, I thought her behavior was due to pure disobedience and not paying attention, and so I got on to her numerous times and became very frustrated. Now I realize that she couldn't even help it- it was one of the effects of the mass (and swelling) in her brain.

I feel guilty over it... even though people tell me I shouldn't because I didn't know what was really going on and could never have foreseen it.

It has just been a reminder to "give grace" because, even with those we are around ALL THE TIME and think we know SO well.. we might not see the bigger picture.

Oh, I almost forgot to mention- I cut my hair off (really really short) previous to the surgery because I felt it wasn't fair for me to keep all my lovely hair when Merika would be getting hers partially or, maybe.. eventually, completely shaven. It has taken some getting use to, and I do miss my long locks (I had been growing it out since I chopped it while pregnant with Keagan), but it definitely is easier to care for!

It has several ways to fix it- spikey, bangs up or down... yadda yadda. Today, to cheer Merika up, I did it in a faux hawk and asked her who she thought I looked like (because our son has a mohawk.. it's what we do when spring comes around). She actually smiled at me. It was great!


Jeanette said...

Wonderful to get your update. Your Family has been in my thoughts often these last few days.
We are still praying for your (guilt) healing and Merikalyn's physical healing.

grace said...

I read your blog every once in a while from a link at another blog I read. Last time I read, all was well with your family. It is breaking my heart to read about your daughter. I am amazed at your strength through this difficult time.
Please know that I and my husband will pray for you, your husband, your children and your family over these next few days. I know the miraculous power of prayer.