Monday, October 22, 2007

Being Selfish (and Nathan Updates)

Sometimes I feel like a very small human being. Not tiny-small, but definitely not-worthy-small. Here's why. Right now, my parents are getting ready to move with Nathan down to IU Med Center. This is a great thing for so many reasons. The doctors at Ball Hospital have recommended it. The facilities are top-of-the-line. The doctors are among the best. But instead of focusing on how this might help get Nathan better, I am worried about how much farther away they're all going to be from me. I'm also disappointed that my birthday has been completely forgotten in all this nightmare (from which I am so ready to wake up, by the way). Isn't that terrible? How petty... Am I really that small-souled? Sometimes I can convince myself that those feelings are really just resulting from me wanting things to be ok. Other times, I stare at that shriveled, ugly soul and just cry. Ugh.

Here are some Nathan updates:

October 20, 8:56 PM
Ok..the MRI is done. There is swelling on the right side of the brain down inside the brain itself. This isn't a case where opening the skull would aleviate that pressure. So now we have one option. Steroids. This will do one of two things. Either the steroids will go into the brain tissue and bring down the swelling or the steroids will make matters worse. The neurologist says that because Nate is young, healthy, and doesn't have a body full of poison drugs, alcohol, or a history of tobacco abuse, it is recommended that we go aggresively after this problem.

So, tonight we are starting a course of steroids along with the medications he's already been on. Pam, Erin, and I will continue to do what we have been doing - watching Nate to see if/when the seizures stop.

Once they stop over a period of 24 - 48 hours, we can begin to wake Nate and see what effect this traumatic experience has had on his brain.

Once again, we ask for specific prayer. Pray that the steroids will go directly to the spot they are needed, do the work of shrinking tissue, and nothing more.

We appreciate the support we are receiving. God bless every one of you that has joined us in this effort!

F.R.O.G.

Wes

October 20, 10:07 PM
The steroids are now going through Nate's system. It has been 40 minutes since the last seizure. Although the seizures aren't the "big" ones, for a couple of hours tonight he was having seizures five and ten minutes apart.

This momma's heart is hurting and I would do anything to have it be me instead of my son. All day long about all I could do is whisper short prayers to God. I believe with all my heart that He is in control; has been all along and will continue to be our source of strength. Again, I don't begin to understand why it is Nate or why the medication for the seizures works for a bit and then stops. But I trust the Creator and leave it in His hands.

Pray that the steroids bring the swelling brain tissue down, that the steroids do not raise Nate's blood sugar levels or blood pressure and only do good to his body.

In His Grip,

Pam

October 21, 1:25 AM
It is now almost 1:00am. Nate had another steroid shot. The nurse also checked Nate's sugar and it was slightly high, but not as high as the nurse expected. He did need an insulin shot. Nate's heart rate is down and his temperature is down---Praise the Lord. He seems to be resting comfortably right now. We have gone three hours without a seizure.

Thank you, everybody, for your prayers. I don't know how we would get through this situation without you. Our family and friends have been wonderful. Throughout different posts we have thanked different people and I just want to take a little time now to do some more thanking.

I thank my sister, Sandy, for just being here and supporting me. I know all I have to do is ask and she will do anything for me. She has driven me around town when I have had errands that had to be taken care of, brought food, etc.

I thank my sister-in-law, Karen, for her warm hugs and for helping me remember the good times that I had with my brother Joe. I always feel that I can talk with her about him and she understands. Of course, being here in the hospital brings back memories of when he was here a couple of years ago.

I thank my friend, Alice, who gets the prayer chain going from our church. She is a prayer warrior and I know that I can count on her.

Thank you to Nick and Courtney at Target for helping me get some questions answered and insurance "stuff" going for Nate. They were very helpful last Friday.

I want to say thank you to my husband who has been my rock. I don't know how he does it, but he is always there for me. He doesn't get much sleep and lets me at least get four or five straight hours of sleep. I rest knowing that he and Erin are with Nate during the night.

I want to say thank you to Erin for loving my son so much. In the past few months as we have gotten to know her better, I KNOW by the way she looks at my son and by the way my son talks about her that she loves my son very much and makes him happy.

And again, I thank God for loving me and showing me how to lean on Him during this time. This is the hardest thing that I have ever had to go through in my life. I can't imagine going through it without Jesus by my side.

The tears of thankfullness just don't want to stop rolling and the screen is getting blurry, so I better close this post.

Still In His Grip,

Pam

October 21, 4:19 PM
Just a quick status update...

The seizures have continued sporadically, the last one being at 4:04 PM. Right now his door has a sign posted that says "minimal stimulation," meaning that right now we're keeping the lights off, no visitors in the room (but you're still welcome to visit the waiting room), and minimal movement during assessments and check ups. Dad has two rolled up towels on the side of his head. Whenever Nate's position needs to be changed, Dad uses those pillows to stabilize his head. We're doing everything we can to keep those seizures at bay!

Mom said her continuing requests are that the steroids only minimize brain swelling and that seizures stop.

FROG, in His grip, and prayerfully,
Deven

October 22, 11:18 AM
I know it's been a while since we updated. I took my laptop back home, so Mom and Dad are stuck right now. :) I called Dad before work this morning, and he gave me the news for now.

--Still some seizures during the night last night. Bummer.

--They were getting ready to call an ENT doctor to give Nathan a tracheotomy today. The longer he is on the ventilator tube, the more likely it is that an infection will get in. With fluid in his lungs already and being on steroids, that's not a good idea.

--Mom and Dad have a case conference this afternoon with all Nate's doctors to make sure everyone is on the same page and to answer any questions we might have. If you have experience with this and have any advice, please let us know.

--There were several vistors here yesterday. Even though Nathan's not much for talking these days (is it appropriate to use humor in this setting?), it helps to break up the time when different people come by. We might not always be available, but it is appreciated.

Keep praying!

October 22, 11:50 AM
Just a very quick update. It looks like we are moving to IU Med Center in Indy. They have done just about everything they can for Nate here. They want a new set of eyes and a better facility for him. Nate is just not responding to treatment here. I will let you know if the have a different update system, if any at all. We ask that you just pray, pray, and pray.

In His Grip,

Pam

October 22, 4:59 PM
We are still at Ball Hospital, waiting on confirmation of a bed at IU Med. We had a bed, then we didn't, now we do but it hasn't been confirmed and until that happens, we wait. It could still be in the next few minutes, it might be tomorrow. That part is frustrating.

This afternoon, Nate has had some more seizures. He had four within fifteen minutes of each other, which is not what we want. His blood pressure was up a bit, along with a slight fever--but not to where they are concerned. Me, as his mom, I am. I don't like those little rises. I have sat by his bed several times today just praying and being still to let God work in my heart.

The short nights and the seemingly no progress are starting to wear on our bodies. Pray that God will give us a renewed strength.

As I am typing this update, we were just informed that we do not have a bed again. This is very frustrating. Once agian, we give all of this to God. There is no doubt in our minds that He is in control.

We love you guys and thank you again for all your support and love.
I will keep you updated the best I can.

In His Grip,

Pam

October 22, 9:41 PM
Still waiting. This is tough. Continue to remember us through this process. Pray that as Nate travels, he will be comfortable and there will be no seizures. It is Wes and me at the hospital tonight, so we are going to try to take turns watching and sleeping. We will update as we can.

I do want to do my thanks for today:

Thank you to the Swan family for taking over the babysitting of Katy and Caleb. I rest better knowing whose care they are in.

Thank you to Katy and Caleb for cheering Mamaw and Poppy up on your visits. We love you so much.

Thank you to Tom, Sandy, and Karen for helping me get all of our stuff ready and down to the car so that we can go at a moments notice.

Thank you to my brother, Dan, for helping with our Dad. There is so much that needs done at his house and he is stepping in and helping there.

And again, I thank Jesus for walking with Wes and with me every step of the way. He is so faithful.

In His Grip,

Pam

October 23, 7:47 AM
Nate got a room at IU Med Center last night at about 2 am. (They drove him down instead of LifeFlight-ing him because of the weather.) I don't know much more than that, but that's good news enough, eh? :) We'll see what the day holds as far as doctors, tests, and PROGRESS.

Keep praying,

Deven

October 23, 8:49 AM
We are here at the IU Med Center. After some paperwork and what seemed forever( I honestly couldn't tell you how long it was, but any wait for us would have been too long!), we are in the room.

Nate has had several seizures while they are doing their assesments. That part is hard to watch. But they have started the Versed (seizure medicine) and one doctor gave the nurse the okay to bump it up. So even though it is starting out lower than they had it at Ball, we were glad he said the word "bump".

Today will be a day of meeting all the new doctors and staff. We will also find out more about this facility and what they offer. We are grateful to have some new eyes looking at Nate and maybe they will see something that we haven't seen before or come up with a solution.

Wes and I are very tired because we have basically been up over 24 hours. I, personally, had to skip some meds so I would not be sleepy. Nothing that would endanger my health. Right now, my son comes first. So don't chastise me. I know that all the moms out there understand.

We just ask that you keep praying.

My thanks on this post is to the nurses and doctors that took care of Nate at Ball Hospital. We so appreciate all that you did for our son. Last night, the night shift was wonderful and got us through the whole transfer thing. THANK YOU!

In His Grip,

Pam

3 comments:

Amanda said...

Okay, I'm a little behind on the blog because I've been reading the care page instead! Agh! Too...many...thing...to...focus...on. Not trying to be flip in a serious situation, just hopefully make you smile. I really wanted to comment on your feelings of unworthiness. I can totally relate - and maybe that means I am small-souled too, or maybe we're just human. My parents were supposed to come up around my birthday this year and go out to eat with us, etc, etc. So...the weekend before, my little brother got hurt in a 4-wheeler accident in Kentucky and had to go to the hospital with a collapsed lung (I guess I never wrote about that on my blog, whoops!). So anyway, he was fine and ended up only being in the hospital for a day or two, but seriously, my first thought/feeling was disappointment that I wouldn't get to go out to eat with my parents if they had to stay down there with him! I guess I'm not here to exonerate or condemn either of us - just wanted you to know that I can empathize with that feeling. Still praying emphatically for Nate's full recovery with haste. Love ya girl.

Keetha said...

Deven, hang in there and try not to be quite so hard on yourself about your feelings. I think your feelings are normal and healthy - - - I think they are a bit of a "coping mechanism."

I love you and am proud of you.

k

Jim and Jaena said...

I'm still praying, Deven. I can relate to your feelings and also think they are normal. My mom has been in MGH for 12 days now and sometimes all I can think about is how it is inconveniencing or affecting ME - not pretty but definitely human. Hang in there! :)