Sunday, November 15, 2009

Rolling with the Punches

It's Kristen here, bringing you...

Words from Jill:

Rolling with the punches

That's how I feel today, like we just need to keep rolling with the punches. I left off yesterday saying that Matthew was just starting to wake up. Shortly after 5 pm we saw the first seizure. It was short. But each seizure that followed continued to get closer together and lasting a bit longer. By 7pm he was back on the versed drip. This seems to knock the seizures out flat, and hasn't been horribly sedating. This kept the seizures at bay for awhile. He was still awake when I left him around midnight to go to sleep. I got a phone call from the nurse around 5 am saying that he was having progressively more seizures since 3 am and they were calling Dr. D. He had them up the versed and give a bolus. That seemed to help, so I was off to sleep again around 5:45. At 6:30, they called again and said he was seizing almost one on top of the other again. ( I have asked the nurses to call me if anything changes, since I am not able to sleep in his room. I sleep better when I know they will call me if anything changes). Dr. D had ordered to give him a load of another medicine and up his versed. When the nurse tried to flush his IV and Matthew pulled his foot back and started crying. His IV"s have not been lasting long, and this one, too, was done for. I asked about a central line instead of just repoking him for another IV (a central line goes right into a deeper big vein, and can be used a lot longer. You can also draw blood off of a central line). They said they would ask the intensivist if he would. The nurse told me that he was one of the best at doing these. He came over immediately and started it. It went in as slick as a whistle. We think that some of the increase in seizures was due to the fact that Matthew's IV probably started going bad early this morning. When I came to see him at 5 am, she said that she thought it was probably not going to last much longer.
We restarted all his meds and it took a couple hours, but he's resting comfortably now. Matthew just needs more time. More time to adjust to the new meds. We are just learning a big lesson in patience.

I so badly want to be home with the kids, and miss them like crazy. I know Matthew is in the right place to get these seizures fixed so, that does help my sadness of missing my other kids a bit. We've talked about Steve and the kids making a big road trip if we are still here next weekend. I've never been away from them this long.
So I'm off to take a nap. I'm gonna try and catch up on a little much needed sleep.


Lisa said...

I think that a successful life comes when you can find lessons to learn from every situation.

There have been several times where you have mentioned the word 'patience'.

How wonderful that amid all the trials that you are facing, you can still find something to learn, and something to be grateful for.

Patience is a wonderful trait to have, and your patience is definitely an inspiration to all of us that have been following your journey throughout the past few weeks.

Take care, as always :)

Kristen said...

A lesson in patience is never an easy one to learn. You are a mature and wise woman to look at this time as an opportunity to grow. I like how Lisa put it, "How wonderful that amid all the trials that you are facing, you can still find something to learn, and something to be grateful for."

I really look up to you Jill. And I feel blessed to know you. You help me be a better person.

raintree's village said...

Jill, thank you so much for sharing all of this with us. I think most of us can learn something from watching how you've handled this so gracefully.

I'm reminded of a song by Sara Groves, It's gonna be alright- here are the lyrics-

Michelle said...

Just read your update from today. I will keep praying that these seizures subside, and the Doctors can miraculously prescribe the mix of meds that will sustain him long term. I know this sounds simple, but we know the Lord can make it simple. Keep the faith, and know that you are still very much in our thoughts and prayers. I'll be ready to make that pot of coffee for us...Love, Michelle 519 is on an end, and very quiet with the door closed.

Michelle said...

I think you made a great call on the central line, it will definitely simplify matters. No more sticks for blood draws and no more watching the peripherals every minute just waiting for them to go. Matthew is so blessed to have such a great Momma!

Tara said...

Patienceis a tricking thing..

I learned patience after I had Michelle. Nothing went the way I had intended them to and it drove me wild.

Matthew has 2 very wonderful parents who love him dearly. I can see that just by reading your posts.

Im still praying for your family.

therextras said...

Praying for Matthew, and you.

Josephine said...

Oh how I hate IVs!! When Avery was in the hospital in June they kept on having to replace her IV, and they kept on putting them in the back of her hands and they kept on failing!!! I'll have to remember about the central line thing if we're ever there for that long again...
I pray that you will not have to wait too much longer to take Matthew home so you can all be together as a family again.