Update

Sorry for not updating since Sunday, but thank you for all of your prayers!  It's been a rough week.

After having seven for the day before we left the ER, they allowed us to come home.  I had two more that night.  So, nine seizures on Sunday.  That was after the IV meds that usually do the trick.

*Monday-5 seizures
The home health nurse came over in hopes of giving me the IV meds, but they never arrived and so she gave me IV fluids.
*Tuesday-5 seizures
Started the IV meds and had three seizures after she gave me the IV meds.  Doesn't make sense.
*Wednesday-4 seizures
Started the IV meds in the morning, thinking that might help...not so much
*Thursday-It's 3p and I've already had three seizures.

We are praying for wisdom for the doc on the best direction to take from this point.  I "shouldn't" be having this many seizures with the treatment we are doing.


My labs are all coming back very weird, as well.


I will try later this evening to put a post of the fun that the Nanny and I had today...here's a hint: a bird flew into our window and got hurt.  B brought it inside so that we could nurse it back to health.  When the Nanny and I walked in to check on it....

ER

We are in the ER this evening.  We were blessed with 7 amazing days of no seizures or auras!!  WOW!!!  Thank you, Lord!!

Then, today happened.  I woke up around 2:45 this morning having a pretty bad seizure.  I felt yucky, even super moody.  I could barely speak.  B and P went to church.  Once they arrived back home and finished lunch, I had another one.  My doc calls four seizures the breaking point and when she wants me to take rescue meds (which typically don't work).  So, she had shared with us through the IVIG treatments that she wanted me to go to the ER over the weekend if I had 3 or more seizures in a day.  Thus, B called her when I reached three seizures and she said to head to the ER.  I had another one soon after.  Our sweet angel on earth that we told you about a few weeks ago was at our house very soon after to take good care of P. She is such a treasure.

So, we are still in the ER.
They've done the IV meds.
I'm at six seizures for the day after an entire week of NONE.
They're still trying to decide if they keep me overnight or not.
We met a precious nurse, J, that has had many similar medical issues and her little boy, R, (about the same age as P) just started having seizures.  Will you say a special prayer for their family?  J, R, and her husband, M.
If no more seizures tonight, we'll go home this evening and have home health do infusions all week.  If more seizures, I guess we'll stay and see what the doc decides.

Thank you all for praying!!!!

WOW & OW

Yes!  You read that correctly:

WOW-to the response to treatment
OW (a.k.a. ouch)-to the response to treatment

Why are we saying WOW?  Well, we've been blessed to watch God perform some miracles this week.  As you know, my treatment last week went well (much better than when we did it in May) except for Friday when my vein blew and we weren't able to finish with the fluids.  Some craziness happened with the doc's answering service and so we couldn't get an answer from them on what to do about it.  So, the pharmacy gave their recommendation.  That was followed by a rough seizure that evening and four more on Saturday.  However, my last seizure was on Saturday around 7pm.  Yes, you read that correctly, not even an aura.  Praise the LORD!!!  Thus, WOW!!!!!

Why the OW?  We believe that the fluid infusion was an important part of avoiding side effects.  It is stated that it's important to get extra fluids and the pharmacist thought that drinking that much more would be fine.  Not so much.  Thus, I have been battling a pretty intense migraine since Friday.  It comes and goes, but it's coming more than it's going!  For some reason, when I eat sugar, it helps a bit, even better than the high dose pain meds they want me to take.  Anyone have a good explanation for that one?  Obviously, after the diet I was on to treat the seizures that didn't allow for carbs, I'm thrilled to "have" to eat sugar!  I'm not thrilled with the headache, though.  So, big time OW as we are out of sugar-y treats since hot stuff's b-day has passed and we've eaten all of the sweets that we had hanging around for his celebration.

The doc also let me know that my potassium levels are elevated for some reason.  So, she's going to run labs again soon to see if it was a fluke/lab error or if we need to be looking at that, too.  She has also ordered an infusion first thing tomorrow of the fluids that were missed last week.   The hope is that it will help with the headache.

So, it has been so fun to watch the Lord perform a miracle and heal me.  Five days without any type of seizure is amazing!!!  WOW!!  Go God!!  We are also blessed to have a doc that is willing to pray with us about each step of treatment.

Will you each continue to pray?  It seems that each time we post that things are better, they get yucky again!  So, there is someone out there that the Lord loves talking to and He misses you when you stop praying!   Keep talking to our sweet Daddy God!!  He loves hearing your voice!

Now, to end on a precious note!

Celebrate

Today is a day to CELEBRATE!!!

It's the day that we celebrate the man of my dreams, the love of my life, the man I respect most on this earth...the man that makes the equation of two becoming one work!!!!

Today is B's b-day!!!

As most of you know, this guy loves Tex-Mex!!  However, his wife doesn't (I know I'm weird).  However, it's his birthday and so he gets everything he wants!!!  Thus, we went to Pappasito's last night!!!

Celebrating with his Critter!!

You can tell that she loves hangin' with her Daddy!

Now, it's time for the whole restaurant to celebrate B, Pappasito's style!!!

Whatcha got on your head, Daddy?

Learnin' to blow out a candle since her b-day isn't too far away.

How do I look?

We had to run by Whole Foods on the way home and one of the ladies that worked at the store said that they were too cute to not take pictures...so, we stopped for a Daddy and Critter photo moment!!

Can you tell that she is crazy about her Daddy?  We all are!!!

Happy Birthday, my love!!!  You are amazing and I pray the whole world celebrates YOU today!!!!!  You deserve it!

Does God Answer Prayers?

Prayer is powerful!!  God is even more powerful!!  We've seen it over the last two days!  Wow!!!  The Lord has answered many prayers!!!

As you know, we were concerned about the IV infusions for many reasons and had a few specific prayer requests...
*the treatment will run smoothly...so far, so good!

*they can find a good vein and not blow it so it's available for the rest of the treatments...the nurse did a fantastic job and has placed it each day on the first stick.  She was even able to use the same vein today that she used yesterday.  She also left it in tonight so that she won't have to stick me again tomorrow.
*the nurse truly does know how to administer this treatment safely...they even sent another nurse out to the house today so that our nurse could train her in how to administer this particular treatment.  So, there is a vote of confidence in her abilities!!
*I can still love on my sweet little girl...she definitely knows that something is happening to her Mommy (she wants to pull on all of the tubing any chance she gets), but I've been able to get some good hugs.

*B will be able to get work done from the house since we know he needs to be here to watch over the process since they don't seem to be on their game and if my seizures do increase like last time...he has been able to accomplish a lot from the house, but still come and sit with me when they are starting new lines or changing things.  It's wonderful to have him by my side protecting me.  I've also not had any seizures during the treatment (I had 16 seizures the first three days of treatment last time).  I only had a very small one on the way to bed last night.
*God will receive the ultimate Glory despite my yucky attitude right now in how this seems to be unfolding!!...only HE knows the answer to this one, but I pray that He is receiving glory.


The Lord truly has heard your cries and our cries and things have gone quite smoothly.  Tomorrow will be a tad different because the nurse already had another appt. scheduled before my orders came in...so, she will be trying to start the treatment for that appt., another nurse will show up to finish covering that patient, and then she'll come here.  Thus, we will be starting a bit later.  Starting at 10am each morning has us finishing close to 5p.  So, if we start much later, we'll run in to the evening which is intended to be a bit of a celebration since hubby's b-day is on Sunday!!!

Do you want to hear about more prayers being answered?  I do!!  Our precious angel of a nanny told us today that she can at least stay until January, rather than the end of this month!!!!  She was able to speak with the family that she would be helping and they said they are good until January!!!  WOW!!  So, the Lord heard your cries and our cries, once again, and chose to answer our prayers!  Jesus, Lord, we thank you!!!

Confidence

Well, our doctor did an amazing job of getting the orders submitted on Monday.  She hoped to start all of the treatment on Monday, but said she understood it would probably take until Tuesday.  Thus, my treatments were supposed to start yesterday.

However, I ended up spending almost three hours on the phone yesterday afternoon with the pharmacy, home health co., and doc's office.  It was unbelievable.  My doc did an amazing job of writing the orders and getting everything submitted clearly (the prescription stated treatment on 11/1. 11/2. and 11/3.  However, the pharmacy and home health company somehow got confused.  It was frightening.  We kept saying, "If I was an 86-year old woman that was trusting these people to get it done right..."

The pharmacy was late getting everything delivered to the house.  Then, the Home Health company called and said they were on their way and I told them the meds and supplies had not been delivered yet.  They said it was no big deal because they were only supposed to do admit paperwork.  I explained that the doc was very clear that she wanted treatment started Monday, but was settling for Tuesday.  He said he would make it happen.  Then, he arrived and told us he had parked at the end of the street because he couldn't find our address and just started walking up the street until he found it (that inspired great confidence)!!!  Did I mention he had GPS, too?

Home health then said that there was no way they could start the treatment yesterday because the treatment would take too long (4-6 hours) and he had another appt. and they couldn't find another nurse that was trained in how to administer these treatments.  Another confidence builder.  So, they promised they would send out a new nurse Wed-Fri to administer the treatments.  This was after they told me this guy was the best in the area, but he wouldn't be able to do it...yikes!!!

The courier finally arrived with everything from the pharmacy.  I thought I remembered having to refrigerate something last time.  So, when he arrived, I asked what needed to be refrigerated.  He said, "maybe something in that box, they didn't tell me to refrigerate anything."  So, I called the pharmacy and they said they forgot to label it because they were trying to get it out so quickly.  Confidence, anyone?  What if I was an 86 year old woman and couldn't even lift the box and just left it at the door until today? 

So, when I asked what needed to be cold, they told me two things.  I was then transferred to someone else who said not those two things.  It was amazing.  The pharmacist finally got on the phone and told me what needed to be refrigerated.  Then, she told me to take it out in the morning prior to treatment so it could reach room temp.  She actually told me that if I kept my house close to the same temp as hers (and what would that be?), I should take it out about three hours before the treatment.  Otherwise, maybe one or two hours, but make sure it's room temp when you get the infusion, but you don't want it out too early either.  Anyone else confused...?

She also said that she assumed that I remembered how to do it all since I had this treatment done before...I reminded her that my memory has been severely affected and I don't know my name certain days.  As well, the last time we did these treatments my seizures went berserk and thus I have very little recall of the process, but she's trusting me to properly store and handle the medication.  Not to mention that reading is still a huge seizure trigger for me and so trying to read each package for instructions would only cause more seizures.  Which it did last night as I tried to get everything organized for today.

We have some sweet friends that own a Home Health co. and we tried to get it set up for them to come do the treatment, but the pharmacy wasn't willing to pay them (that's apparently how home health works: Pharmacy gets paid a lump sum by insurance and then they pay for home health from that lump sum).  Our friend seems to know exactly what she's talking about and was building our confidence in the way it would all play out...she even called the pharmacy to try to make it work.  They said, "no, we would have to pay all of the out of pocket difference and we are talking many hundreds of dollars."  So, she gave us some tips since the old home health co. basically blew all of my veins last time.

B spoke with the nurse that should be starting my treatment today and she gave us the exact opposite advice from our friend (who explained why those methods would hurt more than help).  So, if you've not already gathered it, we are begging for prayers for the Lord to be in complete control since the pharmacy, home health, etc., are not comforting us. 

Please pray that:
*the treatment will run smoothly
*I can still love on my sweet little girl
*they can find a good vein and not blow it so it's available for the rest of the treatments
*the nurse truly does know how to administer this treatment safely
*B will be able to get work done from the house since we know he needs to be here to watch over the process since they don't seem to be on their game and if my seizures do increase like last time
*God will receive the ultimate Glory despite my yucky attitude right now in how these seems to be unfolding!!

Thank you precious Prayer Warriors!  I pray you find joy sitting in our Big Daddy God's Arms this morning talking to HIM!!!

IVIg- Round Two

Precious Friends and Prayer Warriors-  Here is an update to our most recent post...  We were able to be on the phone with our Neurologist yesterday for about a half hour or so coming up with a treatment plan.  Our doctor determined that the next and best course of action would be to resume IVIg (which we did in May).  In addition to the IVIg, we will also be doing IV Medication over the next three days.  More or less, we want to repeat the results we had at the end of June when Princess was in the Hospital.  While we too hope this is the start of the finish, we are a little anxious about the IVIg as it provided for very unfavorable results in May of this year.  Lord willing, we will have very different results. 

Good news...Princess will not have to be hospitalized to receive her treatment.  Rather, we will have home health care here for the next few days administering the therapy and then the doctor will determine whether or not to do weekly therapy or monthly therapy.  Please pray that all will go well with the IVIg, Princess will have a favorable response, smooth coordination with the home health agency and those involved in making all this happen. 

THANK YOU!!!