Saturday, December 20, 2008
Almost Home
It is about 6:30 pm Ohio time and no seizures last night or today. Timmy was full of energy, hungry and busy busy busy. Not the best combo for a hospital room, but we are not complaining. He has definitely been doing better then I have seen him in weeks. I think the reduction in medicine and the huge break from a continued flurry has been so good for him. Tonight the plan is to add one more medicine back and giving him a dose of a sedative to get us home safely. He will still be monitored through the night, and then will be unhooked for an 8:00 am discharge. Jim will obviously not be home to preach, but Gus graciously said he would cover.
We are so thankful to have been here, but are ready to be home again. It looks like there is a great chance we will be back again in the future. Thanks for following the blog... It has been fun to process my thoughts of the day here and be able to communicate to so many at one time.
Keep praying for God's wisdom. When and if another Cleveland trip comes to pass we will continue our to Chronicle our adventures.
We are grateful for each one of you!
Stacy, Jim and Tim
Friday, December 19, 2008
Timmy's favorite Doctor is Doctor Pepper
The neurologist spent so much time with us today answering question after question after question.
For now, they are hoping for a couple more seizures that are more "typical" meaning what we see on meds at home, that would really help make the case for surgery. She will have the team meeting in Jan. The other neuro doc we met with the first day will also be working on this
from a different angle so to speak. His expertise or focus is on the cause. He is the one who ordered all the labs to look at genetic and or metabolic breakdowns that could be contributors.
He will also be able to add in his piece at the team meeting. All of it will help with where to go from here. If surgery is not ultimately the answer, once they have the whole picture they can put together a plan that will help with the best quality of life he can have.
As far as Timmy goes, he did not seize again after this morning. He did well with his spinal tap as he sang the whole time the mask was on as he drifted off to sleep. The guy is a trooper, had a great attitude and was well rewarded with a whole Dr. Pepper. Who is his dad???? Like father like son.
We will not make it home tomorrow, they need to make sure with less meds that he doesn't flurry. We have changed our tickets to Sunday and that means we can still be back to Tucson by Sun. afternoon, which is sooner than we thought it might be.
Thanks mom, for taking such great care of our kids! It makes being here so much easier.
Thanks to all of you who have prayed for us. We know God is directing our steps.
Thanks to those who have helped us finacially to get here and to help with the bills that will come.
I will try to write an update on Timmy's night in the morning.
signing off for now...
Timmy slept pretty well with a blood draw again at 5:00 am
He began to seize around 5:45. I was sleeping next to him and
did not see it because it resembled the one that he had 2 weeks
ago when we called 911. It was very subtle and he was non-responsive.
The seizure lasted about 8 minutes and he was given some emergency meds
to stop it. He then had another one a couple hours later, so we added a
dose of the last med that we took him off of. It will take a little while to
stabilize him at this point, so coming home tomorrow seems like a long
shot. The neurologist will be looking at his past EEG's as well as todays
and doing a comparison to see where in the brain the seizures are coming from. If the
EEG's were clear and easy to read, we should have some more info to
go on by lunch time. In the meantime, he is sleeping soundly.
I will write again as soon as we know better what they have been able to
put together with all the info they have gathered and when we might be
able to head home. It is hard to be away this close to Christmas, but
I know it was the right thing to do to come. Jim and I are both tired so
continue to pray for stamina and peace. The Lord is good, we are
so thankful to be able to be here and have the kind of technology and
care to tackle this complex stuff. We feel so blessed to live in this country and
have this level of care... amazing.
Thursday, December 18, 2008
The other kids are on Christmas break starting tomorrow so I am looking forward to getting home and being with them too!
In order to still make our flight... Timmy would have to have seizures tonight, and they would have to be able to get them under control well before they discharge us, a tall order.
If he does not seize, or the neurologist thinks we may need more time to get his med. level back up, over a couple days we are not going to be back Sat.
We will know better by tomorrow!
He will have another blood draw in the a.m and then a spinal tap at around 11:30. ( He will be sedated for that) not my favorite of all procedures. Pray for me and him
Keep praying for God's will to be done in all of this.
***Fun notes of the day... we are expecting a visit from old friends Kay and Micheal tonight. Timmy opened a fun present Barb sent with him, and Timmy has a great attitude, commenting on how he would like to "live here" ( I think he is getting a little bit of king syndrome.. hee hee)
Kaley, Bradley and Holly if you are reading this tonight
we love you soooo much and can't wait to get home and
make cookies and decorate gingerbread houses! Enjoy your
last day of school before break!
God knows and is in charge, so we keep talking to him about all of it.
We are just letting you know so you can join us in talking to him about it too.
We are so grateful for no seizures! I guess you could call it a catch 22.
I will write again tonight so you can see how God works it all out.
Bye for Now....
Wednesday, December 17, 2008
Thumb's up is how we describe today. Timmy had more blood tests, and they were hoping to get some seizures recorded today after taking him off of one of his 3 meds last night. No seizures.... Strange, we did ask the Dr. about
possible environmental triggers, no connection at this time. Weird though that his biggest breaks have all been when we are on trips. So we decided we are leaving for Hawaii as soon as we get home from Cleveland! Just a joke...
Timmy did great today lots of energy feeling good. We made the best of it and enjoyed the time being with him. They plan to adjust the meds again because the Dr. can't see the origion of the seizures if he is not seizing.So, we will see how tomorrow goes. The dr.'s and nurses have been very nice, we are reading a book about epilepsy written by one of the neurologists on the team here as time permits. Their was a water main break down the road so the whole hospital is using bottled water until they can get it fixed. Adventure is Jim's middle name so no "local disaster" makes him flinch.
Testing continues as do our dialogues with the doctors here. We won't know very much for a while. Most of the tests resuls will take at least 6 weeks.
Thanks for continuing to pray, it is obvious to us!
Good night!