August 3, 2014

Another Day

Friday morning Addison was scheduled to be at Children's National Medical Center in D.C.  Traveling to D.C. in the throngs of rush hour traffic is not a task to be considered lightly.  We live only about 60 miles away but even in the middle of day when traffic is at its lightest this trip takes us 1 1/2 to 2 hours.  We had planned to leave our house around 6 am to allow for the crazy rush hour traffic, have time to park, check in at security and get Addison registered.

We could tell there were many people praying for our journey!  We made it to the hospital in what is typically the worst traffic of the day in just 1 hour exactly.  There was never even one of the typical stand stills or slow downs.  Really, I can not stress how amazing this is.  If you have not driven in D.C. traffic you will never fully comprehend it. 

Anyway, instead of the usual stress of dealing with traffic and running from the parking deck to not be late we had an hour to sit and pray and drink a cup of coffee before we had to get Addison connected to the EEG.  This is the first time in weeks we've had to just sit for a minute.  It truly was a good start to such an anxiety producing ordeal.

The test itself went as well as such a thing can go.  The hardest part is getting the leads connected.  This takes about 30 minutes and Addison does not like being held down for such a long stretch of time.  I think he may be developing some stranger anxiety, too, which does not make matters any better.
One of the side effects of the prednisolone is that Addison doesn't sleep.  Once in a rare while he will go sound asleep for a short time.  He's really completely exhausted.  It doesn't help that it seems when he does finally go to sleep, he only gets a short nap before we have to wake him up for his meds.  That is just so wrong it isn't even funny.  Anyway, this did help him during the test.  He had to be connected for 4 hours so I was kind of wondering how to keep him calm and tethered to the machine for four hours.  When he was connected to the EEG in the hospital three weeks ago he screamed for hours.  Anyone who knows our Addison knows this is very unusual.  On Friday, he spent the first two hours just lying on my chest snuggling and dozing for 1-2 minutes and then he'd lift his head up and look around and doze for another minute or two.  The last two hours we passed with books, flashcards and singing.

We were not scheduled to see the neurologists on Friday but Addison's lead neurologist stopped in after the EEG was running to check up on him and connect with us.  She asked us a lot of questions.  We asked her a lot of questions.  She reassured us.  We tried to express our gratitude toward her.  Of course, because the EEG had only begun she could not tell us anything at that time.  She did say she was going to try to connect with the head of the neurology team on Saturday and see if they could get us some information so we didn't have to wait until Monday. 

I know I go on and on about this but I have to say again that this level of caring is unmatched any other place in the medical community.  I am completely floored with every encounter I have at CNMC.  There is a team of neurologists who are tending to Addison's case.  The lead neurologist, Dr. FM emails me almost daily.  She has personally worked out scheduling details, spoken to the pharmacy on many occasions (to fix their repeated errors) , answered our questions as if they are the most important thing in her world, and without a doubt we know she truly cares about Addison coming through this victorious.

Last week there was some confusion within the scheduling department about where Addison's appointment was to be held tomorrow.  I was told the head of neurology himself took care of getting it straightened out.  I just can't say enough times how blessed we feel to have access to this quality of care.     

But back to the EEG.  We really don't have any conclusive information to share.  We know from looking at the EEG ourselves that his brain waves are not as chaotic as they were two weeks ago.  We also know that no one was running around freaking out so that makes us think it must have been better than when we were in the hospital.  But we don't know if that is good.  Meaning we don't know if the hypssarythmia has reversed.  Dr. F was going to meet with the head neurologist, Dr. R on Saturday and they were hoping to take a sneak peek at the EEG.  She emailed me early Sunday morning to say they went to look at it but whoever was in charge of downloading it hadn't done it yet.  They thought they would go to the EEG lab later in the day to do it themselves but they were both on call and too busy to get back to it.  It is disappointing to have to wait a little longer for answers but it is such a blessing to know that there are two doctors out there who didn't know Addison before July 15th who care that much for him. 
Tomorrow we will meet with Dr. R and we will, God willing, have a thorough status report at that time.  We will also be making the plan for the next two weeks.  That will include the schedule for advancing the wean from the prednisolone and scheduling another EEG. 

Tuesday we began the multi-week weaning schedule from Prednisolone.  So far he has been seizure free since Wednesday.  So far as we know, anyway.  I say that because we have observed seizures while he was in bed so we don't know if he is having seizures when we don't see him. However, the fact that we haven't seen any while he is awake for several days means there has been a significant reduction in seizures.  While that seems like a good thing, unfortunately, it does not mean that his brain activity has returned to normal.  You can have hypsarrythmia without seizures.  

As for overall health, Addison continues to hold his own.  It is obvious he is suffering in many ways.  His stomach is always bothered from the prednisolone.  He is also extremely constipated from the meds.  He cries out with the pain of the cramps often.  Unfortunately, all the things we can do to help him with it requires trying to get him to swallow something else so we are always trying to balance easing his discomfort with his struggle to swallow. 

His blood pressure was initially high and hovered there for the first two weeks of meds.  This week it is coming down.  While it is not normal yet it is below the high ceiling and has a trend of going down.

His blood sugar goes back and forth.  Today it is higher.  So we pray for it to go down.

He does not sleep really at all.  He is very jittery and has a hard time settling down.  He kind of lays in bed trying to go to sleep and moans in a very sad and pathetic way.  Actually, more often than not someone is holding him.  It is the only bit of relief and comfort we can give him.

While it is a very small thing, his face is swollen from the steroids.  His cheeks look so puffy.  It reminds me of Kaitlin's cheeks when she had her wisdom teeth pulled a few years ago.  This is called Cushing's Syndrome. 

He has also started to develop a rash on his face and bottom. 

He is barely nursing which is disturbing since that is the only way he can take nourishment.  I know I have not made the time to talk about it here yet but structural issues in his mouth make it impossible for him to swallow.  He was supposed to have corrective surgery the week he was hospitalized for the seizures.  So Addison can swallow only a drop at a time which means he is still exclusively nursing.  Therefore every feeding is so very important.  He has no appetite at all so I struggle to get him to eat.  I worry that he is not getting enough and that my milk supply will suffer causing greater problems for him when he recovers his appetite. 
However, he has lost about a pound (down from 18 pounds) and when we weighed him at the hospital on Friday he was at 17 pounds 7 ounces so he is in an upward trend despite all.  The last few weeks I have prayed specifically that even if he couldn't gain during this time that he would not lose any weight.  Those 7 ounces are  a definite answer to prayer for me.

Probably the hardest thing for all of us right now is that Addison acts nothing like the boy we all know and love.  I can count on 1 hand the smiles we've seen in that past 21 days.  He doesn't focus on anything.  He doesn't move or crawl.  He doesn't play.  It's like he is just gone.  We spend lots of time cuddling and loving up on him.  That part is easy.  And, just as always, he is with us through everything... meal time, swinging, pool,  tending the chickens, devotions... whatever we are doing.  But we miss seeing his joy for life.  I have read two stories about little boys who recovered from Infantile Seizures and they are both doing well today.  I am trying to remember they were both where Addison is and they came through it.  But in the meantime, we still miss our boy. 

Tonight I am holding on to God's promise from Luke 6:17
"And he came down with them, and stood in the plain, and the company of his disciples, and a great multitude of people out of all Judaea and Jerusalem, and from the sea coast of Tyre and Sidon, which came to hear him, and to be healed of their diseases;" 


When Addison was born, indeed before Addison was born, we gave his life to the Lord.  We trusted God to heal his heart, and He did.  We trusted the Lord to restore his hearing, and He did.  God can heal his brain just as easily.  Until He says otherwise, I choose to believe He will.  We ask you to join us in holding fast to that belief. 

Friday night we celebrated what God has done and what we believe He will do with pizza and banana splits.

Thank you for your emails, texts, calls, letters, meals and help with errands.  It truly means so much to us.  It may seem like a small thing, but to us the support of loved ones in our hometown and around the world helps to keep us going. 

Friday night we were really worn out.  And I had a migraine.  A little bit of advice.  If you happen to get migraines from bright lights, like say driving without your sunglasses on a bright day or the eye doctor shining those little lights in your eyes... and your baby happens to need an EEG...  When they get to the part of the test where they try to trigger seizures with lots of bright flashing lights, bury your head under a blanket.  Because your baby may think it is cool, but you will instantly get a blinding pain in your head. And that is so not cool. 

While we were gone the kids cleaned the house.  Which was amazing.  My house has literally not been cleaned since before company arrived on July 1st.  It was a blessing to come home and not see a layer of dust on the piano.

But I think I got a little distracted there.  Traffic was horrific coming home.  It took us about 2 hours in the Friday evening rush hour.  And we really were just worn out.  And I had a blinding headache.  So I just wanted to crawl into bed when we got home around dinner time.  But we decided to have some celebrating.  Sometimes you have to do that.  Celebrate.  No matter what.  That's called JOY.  We picked up some pizzas.  But we totally forgot about dessert. 

In steps God.  A friend had agreed to take the boys to their appointment while we were in the hospital.  It may seem like nothing to take the boys to get their hair cut but truly to have one less place to run and one less thing I had to do was such a big relief.  But that wasn't all. 

After dinner the girls brought out a huge tub of ice cream that Miss Peggy had insisted on stopping for.  Then they went to the pantry and brought out all the fixings for Sundaes another family had given us way back at Christmas time.  Banana splits were the perfect addition to our impromptu party.  Isn't it amazing how God started giving us a celebration way back at Christmas long before any of this ever started? 

His continued blessings keep our spirits going and the love of those friends around us continue to encourage us every day. 

Love to each of you,
The Wachter family
 

1 comment :

  1. What a day! We daily lift Addison up to God, and will continue to do so... and of course I do pray for you as well!
    Hugs!

    ReplyDelete