Saturday, November 26, 2011

Happy Thanksgiving

Am I the only one who is finding it hard to believe that it's already November?  And, not just November, but it's already Thanksgiving?  It seems just yesterday that it was June 30th.  It's hard to believe that almost 5 months have passed so quickly. 

In some ways I still feel like the child who wishes time would speed up so that Christmas morning will come when I open my eyes, and in other ways I wish I could just hold the hands of time so they would just almost not move.  I suppose it's good that I don't get to choose how to control time.

Anyway ...

I took the other children to see The Muppets Movie.  I love happy movies.  It's a happy movie.  I highly recommend it. 

I wanted to go see Hugo also since I had read the book "The Inventions of Hugo Cabret" to the children ... actually twice.  It's a great book.  But, when it was time to go I was just too tired and decided to stay home with the younger kids.  It was the wise choice for me to get some rest, but I'm disappointed that I didn't get to see the movie.  David, Jessica & Dwight really enjoyed it a lot.  (I hear that if you haven't read the book, you may not like the movie very much.)

We had a really yummy Thanksgiving day of food.  We choose not to overdo the food this year.  It was a nice choice.  Sometimes Dwight and I spend so much time cooking that we don't spend as much time with the kids.  We noticed in the past that the kids prefer us to spend more time with them.  It's more important than the food to them.  I think we found a really good balance this year.  Jacob commented that one of his favorite things about our house on Thanksgiving is how we graze all day.  We certainly did that again this year.  It was yummy!  I'm very blessed to be married to a good cook who loves food.

Ryan's spastic movements seem to be slowing down a little.  I wonder if it's like seizures that can come and go for no reason.  It makes me nervous.  I'm very anxious to talk to his Neurologist this week.  I should probably take a peace offering for interrupting his vacation so much during Ryan's hospital stay.  I know it's his job, but he could have just tried to call back once and then said, "Oh, well, I tried."  But he didn't.  I really appreciate that he kept trying.   Maybe some homemade toffee would be good?

That's just one of the many things we have to be thankful for at this Thanksgiving season.  I believe it's important to always have an attitude of gratitude, and know that in my life when I count my blessings, it helps me to remember my blessings.  I hope that you already know that I am thankful for you, my friends.  I hope you already know that I am thankful for my family, my faith, my God, and for all that I have. 

I pray that you,too, are safe and blessed this Thanksgiving season!

Wednesday, November 23, 2011

Home from the Hospital

Well we made it home from the hospital last night around 8 pm.  Ryan is stable and not seizing.  However, he is having constant "spastic" activity.  Unfortunately, his Neurologist is out of town for the week and is traveling some where without good cell phone reception. 

On Tuesday they did a 3 hour MRI of Ryan's spine and brain with and without contrast.  Beyond the new seizure meds, the MRI, the lamictal level blood test, and the 24-hour EEG, the Hospitalist felt there was really nothing else they could for Ryan.  So, we're home waiting to see the Neurologist when he returns.

The spastic activity means that Ryan's arms are constantly flexed and moving, and his upper body sometimes jerks like he's trying to sit up.  When it intensifies, his lower body stiffens and he "scissors" his legs.  ("Scissors" is the term used to describe crossing at the ankles.)  The spastic behaviors are obviously very uncomfortable to Ryan.  He's not resting well. His eyes are bloodshot from being so tired.  The nurse today suggested that we alternate Tylenol and Motrin.  That seems to give him some relief.

So, what's causing the spastic behavior?  Well, we don't know for sure.  It could be whatever disease or syndrome is causing everything else.  Or, it could be that the 3+ hour seizure he had on Saturday did nerve damage.  Hopefully the Neurologist or the Metabolic Geneticist will have some input next week.  And, more importantly hopefully we can get Ryan something before next week that will give him some relief from the spastic behaviors.

Monday, November 21, 2011

A Quick Update

Ryan is having a much better night, thankfully.  The doctors have ordered a MRI with and without contrast of the brain and the spine tomorrow.  Hopefully, the night continues to go this well so that we both can get some sleep.  Thank you all for your kind words, prayers, and your support.  I sure appreciate it!

A Long Night

Ryan's meds have been adjusted. They are keeping the Lamictal the same, but adding a dose of Keppra to his daily meds.  Last night the thrashing about starting again in mid afternoon and continued to increase in intensity. I was hopeful that the Keppra would calm it, but at 1 am when he started crying with each cycle of thrashing ... and there were definite cycles, I finally requested Ativan for him.  It was a low dose of Ativan, but it did the trick.  Within just a few minutes, he was resting peacefully.  It was such a relief to see him calm and at rest.

Today the Hospitalist (Ryan's Doctor here at the hospital) is going to be speaking with Ryan's Neurologist and his Metabolic Geneticist.  Hopefully, they will be able to coordinate the best plan for Ryan.  I think I will also put a call into the Metabolic Geneticist just to make sure he has all the most recent information since our last visit, and I'll call Dr. Rhame to give him an update.

Sunday, November 20, 2011

An EEG and More Crazy Seizures

On Friday morning we went to the hospital to have Ryan set up for a 24 hour EEG.  When we scheduled this test, Ryan was having 8-9 seizures each day, but then his Neurologist adjusted his meds and during the past few weeks he's only averaged 1-2 obvious seizures every few days.  (I say obvious because it's always possible that he's having "subclinical" seizures, essentially meaning seizures with no outward symptoms.)  I'm not sure that we'll get any information from the test, but we'll see.

It was wonderful to see that the technician who set up his EEG was a familiar face.  Susan didn't immediately recognize us, but after I commented on remembering that she volunteered for the Leukemia and Lymphoma Society (LLS) she remembered me, mostly from my "soft, quiet voice."  I remembered her because she does a lot of work with LLS, and that just makes my heart swell.  They are the organization that sponsored my chemo, meaning they paid $5,000 towards the cost of chemo.  It covered some of the costs that my insurance didn't cover.  It was such a blessing!

Once we had Ryan's head all wired up, we were actually able to return home for the day.  The entire day consisted of someone having to hold Ryan's hands.  He seemed very bugged by the "Brain Monitor."

When I took Ryan home, Johnathon and Deborah were immediately concerned and interested.  I always explain things in great detail to the kids, both in real medical terms, but then also in terms they can hopefully easily understand and grasp.  I called it a Brain Monitor because I knew they could relate it to the heart monitor he had recently had.  Then I explained that it was very important to make sure Ryan didn't detach any of the electrodes so that we could get a good "feeding."  I meant to say "reading."   Friday night when I was saying night prayers with Deborah, she prayed that Ryan's Brain Monitor would get a "good feeding and not be hungry."  Nice.

We made it through Friday night and arrived back at the hospital on Saturday morning at 8.30 with only 2 of the electrodes detached.  They checked to make sure the recording worked, but we were not given any information on whether or not the EEG recorded any seizure activity.  I don't think I'll hear back on that until I talk to our Neurologist.  Our next office appointment isn't scheduled until the end of the month.

So, then we went home.  Shortly after we arrived home, the arm thrashing that Ryan had been doing all Friday night became more intense and his upper body became involved.  It didn't take long to recognize that he was probably having some sort of neurological issue.  From about 9-12, he cried nonstop.  Nothing helped.  He normally calms to a warm bath with Daddy.  Nope, not this time.  His legs were stiff as a board from just above the hips, and scissored.  His upper body was fighting with super human strength.

And, my big mistake for the day ... checking to see if he was teething.  I'm lucky I still have a finger tip.  What was I thinking???  If you EVER even suspect seizure activity, DO NOT STICK YOUR FINGER IN THE PERSON'S MOUTH!!  They really do have super human strength.  Ouch!  That hurt!

So, at noon, I called the doctor and he said to take him to the ER.  I walked into the full Children's ER and they immediately walked us back to a room, with 3 nurses and a Doctor.  They all immediately recognized it as seizure activity.  How did I not know for certain that it was seizure activity?  Why did I wait so long to know for sure?

The ER Doctor was also a familiar face.  She has treated us before in the ER.  She's a good doctor.  We had to stabilize and calm Ryan first.  His heart rate was staying above 150 and his oxygen rate was staying below the low 90's.  Once stabilized, she ordered scans and x-rays to eliminate the possibility that the seizures were being set off by an infection or a fracture, etc.  They gave Ryan a drug called Ativan, which also sedated him.  Then they did full body x-rays, blood work, urine collection by catheter, and examined him quite thoroughly.  They didn't find any infection or fractures. 

As soon as the Ativan started to wear off, the same seizure activity immediately started again.  It didn't have quite the same intensity, but it was close.  Another dose of Ativan brought the same calming effects.  A consult with a Pediatric Neurologist (unfortunately, not Ryan's usual Neurologist) brought a large dose of Keppra.  Ryan took Keppra when he was much younger, but it was replaced with other seizure meds when his seizures changed characteristics.

So, they admitted Ryan overnight .  He slept off and on through the night.  He is awake today and his upper body is again thrashing, for lack of any other term.  He doesn't seem to enjoy this.  I hope they are able to figure out what is going on for him.

The Hospitalist is also a Doctor who has treated us before and recognized us, and impressively remembered a lot of details.  He is trying to reach both Ryan's Neurologist and his Geneticist to see if they want to do an MRI.  If we are doing an MRI, the Geneticist may want to order a muscle biopsy at the same time.
Keeping all things in perspective ... we are very blessed to be surrounded by talented people who have sacrificed much to be able to help us.  We are very blessed to be cared for by so many people who do their jobs so willingly and so kindly.  I am thankful to you for all of your prayers, and would once again ask for your prayers that the Doctors will be able to help Ryan.