Last night, I directed both the high school choir and Kids of Praise at LCS's Night of Prayer. There were only two minor mishaps. #1 - Somehow the third row of kids ended up backwards. That would normally be fine, except for the song where half the group does one thing while the other half does another. The third row has mostly older kids who know what's up. When it was time for the groups to split, most of them decided to do what they normally do, even though they were on the "wrong" side. Unfortunately, there were smaller children in front of them who were confused beyond belief. So I ended up with about every third child doing something different than those around them. That'll teach Michele to have me fill in for her. :) It was cute. #2 - The high school choir was nearly perfect. The only problem was ME. I forgot how one of the songs went. There was a moment of panic that was apparently quite visible on my face. They just kept singing what they knew was right, and I caught on eventually. It's a good thing they're patient.
I just realized while typing the title how difficult I find it to call my brother "Nate." Once, when he was maybe 12 years old, he wanted us to call him Matthew, since he had decided that Nathaniel just wasn't for him. :) That didn't work on me either. Aunt Karen heard me talking to him last week, and I called him Bud. She said she hadn't heard me use that one for a long time. I guess I use it at more emotional times.
October 18, 8:06 PM
We're here at the hospital, and in addition to the previous note, Nate has gone in various one-hour stints without seizures. Unfortunately, it usually dies out at about 1 hr and 5 min. ARGH!!!! So we are generally frustrated because nothing that we're doing is stopping those seizures.
The new room is nice and big. Dad's hospital recliner is off to the side. His birthday cards are up on his closet. And we wait...
October 18, 10:54 PM
It is almost been three hours since Nate's last seizure. We are praising the Lord for little signs of progress. Even though there are a lot of highs and lows (with the highs and lows sometimes just minutes apart), we are still trusting our God. He is in control...even when we don't understand.
It is very hard for me to watch my baby boy and not be able to make everything better for him. I just want to crawl up in that bed and hold him...just like I did about 25 years ago. Somehow, that 8 pound 9 and half ounce, 20 and a half inch boy grew up and is now a 6 foot 2 inch boy and 185 pounds. He is still my baby.
Thank you so much for the out pouring love and support we have felt during this last week. Continue to lift Nate and the rest of us up in your prayers.
Again, I am asking that we pray for the seizures to stop. I am also asking for you to pray that his heart rate will stay in the normal range, along with his blood pressure to stay in the normal range. The heart rate and the blood pressure have been on the high side today.
And to borrow a phrase that Roger Bennett (former pianist for the Cathedral Quartet and Legacy Five)----
In His Grip,
October 19, 9:58 AM
Last night was a rough night. The seizures continue and Nate is at the highest level for one of his meds. We are checking with one of his neuro dr. and seeing if he wants to try a different med. We had a couple of issues with the pharmacy not having meds ready and then Nate goes without his medicine...which then leads to a seizure or two. We think we have that issue resolved. We are also looking at Nate having been on the resperator for almost a week, which they don't want. So there is a possibility of a trach.
Our prayer requests for the day are once again for the seizures to stop, fever down, heart rate normal, blood pressure normal. Also, we are needing strength for ourselves (Wes, Pam, and Erin). We are trying to eat, sleep, and take our meds ( at least Wes and I are "old" and have daily meds to take) and are trying to stay strong because we know that Nate is going to come out of this and will need us. Deven is doing a great job at managing so much for us--along with have two kids age 2 and 5 and a half months, teaching, and getting her masters work done--and traveling the hour from Marion to Muncie. Keep her in your prayers also.
We have great support from our family and friends. My sister has been up here every day supporting me...along with other family members when their schedules allow. Most of all, God has wrapped His
loving arms around us and reminds us that He is in control.
As we talk to doctors today, I will try to keep you updated.
We love you all!
October 20, 1:48 AM
Another day of up and downs---although, I guess really it was yesterday since it is early Saturday morning. I have had some company and then I couldn't sleep. I will give you details of what happened Friday.
Seizures continue. Sometimes we would go a while between seizures and sometimes they came close together. The doctors have now put Nate on Phenobarbitol. We had hoped that he would not have had to go into this class of seizure drugs because of side effects but the doctor felt that the good of the medicine outweighed the risks. Nate also had an EEG and that is the reason for the switch in seizure medicine.
Today my sister took me out to run some errands that had to be run. One of those being a visit to Target to get check on some of Nate's benefits and to see what needed to be done to get those benefits going. Of course, being a young man, and rarely needing a doctor, Nate did not choose the health plan that would be covering a hospital stay like we are having. We are so grateful that he does have some coverage. We are also grateful that this does not change the kind of care he receives. All that we care about is that Nate comes out of this and we will have a tremendous story of how God touched Nate. That is the positive side of me speaking. There is also a side that is scared. I just left his room before I started typing this update and my heart is hurting for my boy. I think of how much I love him and the tears just flow. How much more our Heavenly Father loves us. Again, my mind can't wrap around why it has to be my son going through this and I don't even begin to understand why the seizures will not stop. We are still trusting God to bring us through and give us the strength we need and the strength that Nate needs to pull through this.
Continue to pray that the seizures will stop and that there will be no brain damage or damage to other organs. Pray that Nate's benefits will cover what needs done medically. Pray that we will have the strength to hold each other up, be able to rest, and that God will be glorified through all of this.
It is late and I need to get to bed. The thought process and the eyes are getting tired! Who knows what I might start typing!
Again,...In His Grip
October 20, 5:02 AM
I’m sitting here, about 8 feet from Nathan’s hospital bed. I thought I’d take a few minutes in the quiet of the morning (4:35 a.m.) to put some of my thoughts in writing. The hospital staff here at Ball Memorial have already been doing their duty to pester my son. He only wants to rest and get better. They want to poke him with needles, make him lay on a hard x-ray frame while they take his picture, and even invade his privacy by lifting his eyelids and shining bright flashlights directly into his eyes. Now that most of them are done, I can talk to you.
Let me first say thanks to our daughter, Deven, for setting up this page and giving us the tools to let you know how Nate's doing and allowing you to pass on your thoughts to us. Secondly, that I am extremely thankful to my employers and co-workers at Grandstaff-Hentgen Funeral Service for their support. They have encouraged and allowed me to be here with Nate during this potentially life altering experience. We have no idea how long this process will take, but knowing I have their support is a real comfort and load-lifter.
Also, I need to thank those of you who have sent your support through this forum, have visited us at the hospital, or have called to let us know you care. Your comments of encouragement and support are carrying us through this experience.
Any parent can confirm how difficult it is to see your child going through a difficult situation. I’ve never been in a predicament of this magnitude before. But I can tell you IT STINKS! I’ve spent the last solid week with my son, I’ve talked to him, talked to God about him, but received no response. This is my son, that’s what we do. When we’re together, we talk. He tells me about what is going on in his life and asks about mine. We love each other … we’re father and son…but not this week. This week we’re worried father and ailing son. But, the peace giving part of this experience is that God is in control. God gave Nate to us 25 years ago, and we gave him back to God. So here he is, God! He’s broken. Fix him! I take confidence in the fact that You can! You’ve created a wonderful young man, now take him and make him what You want him to be. Give him a testimony of Your greatness that he will be able to share where ever he goes.
I echo Pam’s thoughts. Pray with us. Pray specifically that we can get the seizures stopped (by the way, it is now 4:55 a.m. and his last seizure was 12:40 a.m.). God Is Good!!
I’ll close with a sentiment I was introduced to by a friend of ours. She was going through a long hospitalization and treatment regiment with her son. She would close her notes with F.R.O.G. (Fully relying on God!) That is my testimony here and now.
October 20, 11:38 AM
Dr. Rao, the neurologist is in his room now, doing his assessment. Overnight, Nate went from 12:40AM-6:40AM and 7:47am-now without seizures, which we were very excited about...we have started dancing on the hour when he has no seizures (1 hour dance, 2 hour dance, etc) which we think amuses him. We think that this new medicine will be the one to do the trick. He said that the EEG showed seizure activiy on the right side of the brain which explains the movement on the left side of his face. He is going to schedule an MRI for later today to get an updated look at Nate.
The kidney doctor was also in this morning and said that his kidney's are getting better and a full recovery is expected, more good news. He said what needs to go up is going up and what needs to go down is going down, so again it's just a matter of taking baby steps.
As far as his family and I , we are hanging strong. The visitors really help the morale here in room 5104, and we truely appreciate everyone's support. Nate is known as the "young guy" in the ICU, and we're hoping and praying that the "young guy" wakes up pretty soon because we all really miss him and his smile.