Rocky Road

Wow.  This last day and a half have been some kind of rough.  Physically rough, but mainly emotionally draining.  I went to church last night and the entire group there cried out to God on Clayton's behalf.  I came home and Clayton had his worst night since he was last released from the hospital.  (Have I mentioned that God's timing is never my timing?).  Clayton started yesterday afternoon just crying for no reason at absolutely random times.  And by last night, he wasn't taking breaks.  Just wanted to cry and hit stuff and get mad.  I told him to just let it all out!  If you're mad, then just be mad and cry all you want!!

By bedtime, his legs were literally spazzing out . . . He was so tired and exhausted, but each time his eyes closed, his whole body would shake with a spasm.  I don't know which is worse, watching him suffer from a headache or watching his legs pop around with no control.  Well, maybe I do know--last night was worse because we didn't have a remedy for the situation.  I'll stop the story here to say that we have been extremely blessed in this regard up to this point.  Although his legs are extremely high toned and spastic, his spasms have never been so overboard that we've had to keep him doped up to counteract them.  So last night was new territory for us and it wasn't fun.  He finally fell asleep laying crossways on our bed last night about 2:00.  Brian and I just left him right there, scared to death to disturb him! 

He woke up this morning with no spasms, but his voice was gone (this happened in the hospital after the headaches).  He has been struggling to speak all day and again been extremely emotional about the smallest things.  There's no doubt that he is depressed.  I spoke to one of his main nurses for a long time today and we agreed that we've got to be more aggressive on getting him back to his "normal" activities.  He's got to get out of this house or I think he's going to go crazy!!  We're just going to start with short stints and slowly build up.  There's a fine line between pushing just enough to get him going and pushing him overboard energy wise. 

We're starting tomorrow with a trip to the pool--and if he only lasts 30 minutes, well at least he got those 30 minutes out among the living.  I'm also going to talk to the therapists about moving his therapy back to the clinic.  It's going to be hard on him, but I really believe it will be good for his heart to get back around his usual peeps.  We'll just have to start with short sessions and build up. We've also got some other things we're working on pharmacological wise, but I have to wait to talk to the doctor more about that. 

Clayton's body has taken a major hit.  It is heartbreaking to watch him struggle like this.  And to not even smile anymore!!  He even got mad when Brian and I were trying to love on him last night.  The little boy who is always saying, "Momma, give me a kiss!" didn't want a kiss!!!  Just. so. totally. sad.  There's just no other way to put it. 

Reality

The reality is Clayton is still so weak.  The tiniest activities zap what little energy he has.  His trunk is not strong enough to hold him upright and by the end of the last two days, he hasn't even been able to hold his head up. 

The reality is his right hand still doesn't function like it used to.  His pincer grasp just isn't there right now and it's frustrating for him and definitely frustrating to watch.

The reality is it took him years to gain these skills the first go-around.

The reality is Clayton is getting down.  He barely smiled today.  He's cried over the smallest things and this evening he was crying over nothing specific that we could tell.  I asked him if his head hurt several times and got no response.  I asked if he was just sad and he nodded with his little bottom lip poked out.  My heart strings are about tugged out!!  How do I explain to him that it's just going to take lots of time and practice to get things back to where they were?  There's no way to tell what is going through that little head of his, but I'm sure it's got to be scary and sad not knowing why his body won't do what it used to. 

The Road to Recovery

He rescued me because He DELIGHTED in me.

Psalm 18:19b

We are so thankful to the Lord!  Clayton seems to have turned a corner in the right direction and is now traveling down the road to recovery!  It has been over a week since his last major headache and he is gaining strength literally by the day.  We went to Memphis yesterday for his follow up appointment with the neurosurgeon and to quote her talking to Clayton:  "God healed your boo-boo."  We couldn't agree more!

You can just tell by looking in his eyes that he is feeling like his old self.  He is staying up for longer periods of time and doesn't even have to nap on some days.  He still has some obstacles to overcome, namely strength and fine motor skills in his right hand.  Sitting in his regular wheelchair for the duration of the doctor visit yesterday wore him out.  His trunk has always been his weakest point, so it's no wonder he has no strength in it after laying in bed for a month.  He has use of his right hand, but his movement patterns are definitely not the same.  He tends to fist it up a lot more when he never fisted it in the past.  I hate seeing the regression in what was his only functional extremity, but we'll just keep attacking it with all types of therapy, and pray the movement patterns return.  I also pray this happens quickly as I already see him getting frustrated with his lack of control of his fingers. 

There is no way to describe how thankful we are for the prayers and support we have received during this last month!  We have felt the love from across town, the nation, and the globe!!!  Knowing so many people are praying for my little boy literally brings me tears.  THANK YOU for taking time out of your days to lift him up--your prayers are still being answered and I hope that you see that in his beautiful smile!

A Chance to Relax

For the first time in a month and a half, we were finally able to enjoy some down time.  My brother and his wife had a small pool party for the Fourth of July holiday, and we were more than happy to attend!  Clayton is still quite weak and not up to a lot of heat, so he stayed with Granny and Pop and had just as good a time as the rest of us (he was needing some Granny-bonding BIG TIME!). 

This was Jackson's second time in the pool and for a kid who loves the bathtub, was still quite nervous.  We figured out he just didn't like not being grounded, because once he got to hang out on the steps, he was happy-go-lucky and Mr. Social. 

It felt so good to get out and doing something different for a change.  We've been so wrapped up in getting Clayton well that I was just about to go stir-crazy!  I am so thankful he is on the mend, since that means outings like this will happen more and more often for our family!

Flashback Friday

June 2006

Arkansas Korean War Memorial Dedication Ceremony

Meanwhile, Back at the Ranch . . .

. . . Jackson is changing almost daily!  He started walking the week before Clayton's surgery and over the last weeks we've spent at the hospital, has become a pro at getting around on his feet!  It still breaks my heart that we weren't able to celebrate the special milestone of his first birthday, but I'm doing my best to not even think about it right now since Clayton still really isn't well enough to think about parties and such. 

He has words now (even if most are still in his secret language):  Still saying Daddy, added Momma, and "B" for his bottle (he had a relapse to the bottle with all the trauma of the last month), and when I start saying no, he starts repeating the "n" sounds back to me.  And speaking of saying no, he's a bit of a rebellious spirit.  Constantly getting into trouble and almost seeking it out just to give me a grin when I get onto him.  Getting onto him causes drama since Clayton can't stand to see him in trouble.  For instance, he was hitting Clayton on the head today with this ladle thingy and when I swatted him for it, Clayton started sobbing.  I guess he'd rather get hit on the head than watch his brother get in trouble!

He's a climber.  Climbs on EVERYTHING.  He would climb up and down this step a hundred times a day if I'd let him. 

He's gotten clingier than ever because of the last few weeks (who could blame him, right?).  And some might even say he's a whiney, whiney, boo, boo; but when he turns on the charm, he can melt your heart with his adorable belly laugh and beautiful smile.

Side note:  as we were going in from this brief trip outside, he ended up falling right on his noggin on the sidewalk.  His mood totally changed since his whole face was covered in road rash!

Keep on Praying

Clayton is not out of the woods yet (last night was pretty rough), but at least he can enjoy a little more activity each day.  His therapy sessions went well yesterday, but he was wiped out afterwards.  It might be a good while before he is back to his baseline activities and strength, but we'll take any progress over what he's had to endure these last few weeks!

I Have a Praise!

Clayton's headache was only mild last night!  He only needed one dose of ibuprofen and woke up this morning without a headache (or at least it seemed!).  His eyes were still dilated, but nothing like mornings past.  He usually wakes up with a wild look in his eyes and can't seem to focus, with his eyes almost bugging out of his head.  It was such a relief to see a mostly normal look coming from his beautiful eyes this morning!  Thank you, Jesus!

The Weekend

Clayton came home on Thursday for another period of waiting it out.  And in true form, he has had a headache both nights he's been here.  Absolutely crazy how he didn't have one headache in the hospital, but has them like clockwork here.  They come on each night around two or three and it takes him until noon the next day to get over them.  By one or two o'clock in the afternoon his eyes return to normal and he seems ready to try normal activities (although he's just too weak to do much of anything).  These past two evenings have been pretty normal except for trying to keep him laying flat most of the time.  (Laying flat helps temper the overdraining of the shunt).  In the meantime, we're on diaper duty overtime since all this extra fluid were pumping in him seems to fly right through!

Thank you so much to everyone for your prayers and well wishes.  While we are still exhausted, this round of headaches seems to be going better because we've changed our plan of attack.  We were giving him oxycodone for pain, and while it helped initially to get him to sleep, the craziness that followed when he was awake was just too much to take.  We've been using ibuprofen more this go around and we have tylenol with codiene if we need something stronger.  Cutting out the oxy seems to have cut out about half of the stress we were dealing with. 

We're just taking it day by day, praying the headaches disappear and looking forward to our follow up appointment in a couple of weeks.  Hopefully we'll be able to get back to some sort of routine, even if it means Clayton's day starts at noon for a while. 

Holding Pattern

I talked with the doctor yesterday and Brian had a super long talk with her this morning.  And it all comes down to this:  there simply isn't a quick fix for Clayton's issues.  The doc admits that her first instinct is to jump into surgery and fix him.  First problem with that is there are several surgical options and none are the clear cut answer.  Second problem is he is only a couple of days out from being treated for the staph infection on his incision.  If he got any infection in his spinal fluid during surgery, things could go from bad to worse really quick.  So we're basically between a rock and a hard place.  We need to wait longer before surgery, but that unfortunately means Clayton may have these headaches for a few more weeks.  Not exciting news. 

So we wait.

In the meantime, we've stepped up Clayton's fluid intake to almost double his normal amount.  Hydration helps with the production of spinal fluid, which will of course help keep those ventricles a little larger.  Any little bit helps . . . Doctor doesn't want Clayton to go home until he is up and moving around again like he was doing when he was discharged last week.  We are fine with that because we really don't want to push him.  In fact, he is still content to just lay in the bed so we will wait on him to start pushing more activity.  To be honest, we've slept better these last two nights at the hospital than we did on any night this last weekend at home.  If you get more sleep in the hospital than at home, then that's saying something!!

We are still praying Clayton adjusts to this new pressure and surgery becomes a nonissue.  The doctors can't take the pain away, and Brian and I certainly can't do it either.  Only a miracle from the Lord will make the headaches disappear.  And only once they are gone can Clayton begin to build his strength back up and start living life again. 

Update

Our weekend at home was a complete bust.  Each night Clayton woke up after only a couple hours of sleep, screaming in pain.  We nursed him through until the pain eased, usually around 6 or 7.  He would then spend the entire day recovering.  We finally decided we could take it no more (it was taking me and Brian both to make it through with him), so we're back in Memphis to see if we can finally get something more concrete done.

But of course, Clayton's been all smiles since we pulled into the parking lot.  He's subdued, but not acting like he feels all that bad.  The docs are going to start thinking we're making all of this up!!!

We'll see what the night brings and in the morning, we meet with the attending about what's been going on.

Pray this shunt gets fixed because right now there seems to be no end in sight!!

At Home, Again

Clayton's I.V. gave out early yesterday morning, so he was discharged from LeBonheur, or the "doctor room" as Clayton has decided to call it.  He was sent home on oral antibiotics. 

And for the third time in as many weeks, we came home and by the next morning, Clayton was waking up in severe pain. 

Seriously.

This is getting old.

We were able to catch it earlier in the night (2 AM) so we immediately gave him Oxycodone and just helped him ride it out.  He came around at about noon, and has been slowly recovering ever since. 

The plan from the doctor's point of view is to give him every opportunity to adjust on his own in order to avoid surgery.  The headaches are spacing out, and today's was a bit milder (still really bad though), so we can definitely see where she is coming from.  And we totally understand avoiding surgery, but it doesn't make it any easier to watch Clayton suffer through one of these horrific headaches. 

I talked to the doctor this afternoon and the plan is for me to just log the headaches and the specifics of each one so she can get the whole picture when we go back for his follow-up visit. 

But in the meantime, as Pastor Corey texted today, I pray his "healing comes quickly . . ."  (Is. 58)

Better Get Comfy

Guess we should just comfortable because as long as Clayton's I.V. holds out, the neuros here want him to finish his regimen of antibiotics.  That means this weekend at least before we go home (again, as long as he still has I.V. access).  In the meantime, we're using the time to our advantage, trying to get him up and out more and more each day, testing the waters so to speak.  We're trying to see if his brain has finally adjusted to this new low pressure environment.  If he's going to have another pain episode, I guess this is the place to have it instead of three hours away at home. 

At any rate, we're passing the time watching the preparations for the grand opening of the new hospital next door.  The trucks and people working kept Clayton more than entertained today.  They're even having a parade tomorrow that we're going to try to get to--funny how we're suddenly hyped up about a grand opening celebration of a hospital.  We're definitely desperate for something to pass the time!

Wrong Side of Memphis

**Clayton is doing better, still being treated for an infection which is most probably still localized to his incision.  He has been up a little the last two days, and we plan to keep pushing him on getting up and around.  We're praying his body is finally adjusting to the lower pressure the new shunt is giving him.

**Neuro docs say six more days of IV antibiotics, Infectious Disease docs say maybe not that long (we can go home on some oral meds)--we'll see how it works out.

**I don't know if we'll all be sane by the end of six more days.  Clayton is well enough to know he's missing out on life.  Granny and Pop were here this weekend and while it was good Clayton got to see them and we got to see Jackson, it just magnified the fact that things are anything but normal. 

Clayton's Status

Clayton had a good afternoon yesterday and even got to go downstairs to watch the cars in the front of the hospital.  He was still acting quite weak, but at least we could see a little spark in his eyes.  The doctor came in and visited with us after she studied his old CT scans and shared with us several options. 

Clayton's shunt is overdraining.  His brain is just not used to this low pressure environment.  Sometimes people can adjust to this change given time, and sometimes another surgery is involved.  The problem is there are many different surgical options for fixing the overdraining, and not one is the clear cut answer yet.  So after much talk and thought, the neurosurgeons asked us to wait it out for two more weeks and see if he can make the adjustment.  This morning the residents came in to discharge Clayton with orders to limit his activity and have him lay flat as much as possible.  Didn't sound fun and made me anxious, but we were willing to do it since they were offering solutions if that didn't work.  (Not what we were getting at ACH). 

After they left, I got up to go to Clayton's bed (since the residents always come at the crack of dawn when I'm still in bed).  Clayton's pillow had something all over it and it didn't take long to discover that his incision was leaking puss (sp?) all over it.  Called the docs back in, they took a culture and immediately ordered antibiotics.  Problem is, Clayton's I.V. quit yesterday and they had only gotten that one after five sticks.  The doctor really wanted I.V. antibiotics, but was willing to do oral to keep Clayton from being stuck again.  But I think that if his culture comes back positive for something, a PICC line is coming in the near future. 

Since then, Clayton has been pretty lethargic and the spark is gone again.  He's running fever and his heart rate is pretty elevated.  It's just been up and down constantly for these last two weeks.  We know he still needs to be here (especially with how he's acted this morning), but I'm really missing my regular life at the moment. 

So as my mom and I used to say in the NICU . . . . . could someone please just

FIX THE BABY?!!!!!!!

Making Something Happen

Well, so much has happened since I last blogged, that I really don't even know where to begin!  Clayton ended up staying at ACH through Monday and improved significantly in the last day and a half he was there.  His pain level seem to be nil and he was very interested in regular activities, and was tired of being in the bed.  And even though we were still having major communicatin issues with the neurosurgeon, we were willing to give him the benefit of the doubt when he kept telling us time would help Clayton regain his normal function level.  We went home Monday afternoon a bit anxious, but happy that Clayton was feeling so much better. 

But then yesterday morning was basically a rerun of last Thursday morning.  He woke up in pain, thrashing and crying and trying to vomit.  We spent the morning in crisis mode trying to decide what to do since we did not feel comfortable taking him back to ACH.  We finally settled on driving him to Memphis to see new neurosurgeons at LeBonheur Children's Hospital.  We were seen in the E.R. and the resident knew immediately that something definitely wasn't right and promised they would get to the bottom of it.  We met the attending doctor this morning, Stephanie Einhaus, and were very pleased with her bedside manner and determination to get Clayton fixed for real.  We've already learned a couple of things from her that we weren't told at ACH which definitely reinforces that it was a good decision to come here.

Clayton stayed in pain most of the day yesterday, but it finally subsided late in the afternoon.  His main complaint now is he wants to sit up and orders are for him to lay in a flat bed to keep his shunt from draining as much. (You know the shunt that is "working properly?"  Well, all docs here were very quick to ascertain that of course it's draining too much for Clayton---which doesn't take a BRAIN SURGEON to figure out!!!)  It was worth the drive over here just to hear our feelings as the parents validated for the first time since his surgery!

Currently we are waiting for his CT from yesterday to be compared to his CT's over the last week at ACH.  After the docs see those, they will have a better idea what they can do for him.  In the meantime, Brian and I have been super impressed with this hospital and their efforts in making the parents an equal part of the caregiving team.  It's amazing how different things can be from one hospital to the next.  (DISCLAIMER:  We love lots of people and departments at ACH, but the neurosurgery department leaves a lot to be desired).  

We are praying for a quick and correct resolution to Clayton's problem and praying we can get back home to live as a family with little Jackson (wonder if he'll even know us after this is all over?!).  We are looking forward to reporting Clayton's full recovery! 

Out of Touch

My phone died last night.  So until I make it to the nearest Verizon store to remedy the issue, if anyone is trying to text or call me, you'll have to use old school measures like email or landlines.  Imagine the inconvinience!

Still Here

at the hospital, that is . . .

There is no way to describe what all has transpired in the last 48 hours, so I won't attempt it.  I just ask that you continue to pray specifically for Clayton to stay pain-free and for Monday morning to bring big changes in his care.  I think doctors are finally beginning to realize that we will not stop fighting until they get it right.  It's just unfortunate that it takes a really squeaky and mean wheel to get some oil . . . 

Banging Head Against Wall

Clayton was taken back to the hospital by ambulance this morning.

He is in severe pain and the neurosurgeons want to "watch him" over the weekend and then make a decision about surgery.  This translates to Brian and I watching him suffer while they go do their own thing.  There is no way to describe our frustration with the neurosurgery team right now. 

Please pray for Clayton's pain to subside and for the right decisions to be made on his behalf. 

Lovely way to spend Jackson's first birthday.  :(

An Answer to Prayer

Clayton is home. 

He's not 100%, but at least he is well enough to be here instead of the hospital.

We are exhausted and I will update with more details later.  Continue to pray for his right hand and speech to be restored completely. 

Thank you everyone for the love you have shown over these past days.