Monday, December 28, 2015

This is for our helpers... please read a letter meant for YOU....

A short update, and then a letter for all of you who read, help, pray and support...

Shea has stayed out of the hospital for 4 days now!  He is stable and not in pain.  His cares are increased right now, and that proves  a bit challenging as we try get back to our normal work schedules, keep up with Christmas day and Simon's birthday craziness, as well as have all the kids home for a long school break.  (shea has a habit of being dc'ed the night before a major holiday and long school break! ) Next week he see's ortho to check the xray of his fusion and one sided hardware integrity ... then we see neurosurg for follow up and suture removal from 6 incisions, GI and endocrinology in the next few days.  Hopefully with in another week or so we will have some news on when he will be cleared to return to he's been out since mid November!

I am overwhelmed in both the good and wonderful way and the plain old overwhelmed way ... So thankful and so blessed that he is home and healing, that we are all together, that we had christmas together, that he is recovering so well.  So thankful for Dan who has done so much to keep everything afloat.  Thankful that it was my son Simon's 11th birthday today, and that he is thriving and beautiful, and has been with us 8 years now. 

Now to get to YOU, all of YOU.  Some have prayed, some have encouraged, some have cooked or brought meals, some have given christmas cookies, some have helped with childcare, some have given christmas gifts, some have given monetary donations and gift cards to help with the extra expenses of hospitalization out of town, some have given more christmas cookies :), some have given a listening ear and mentored, some have written shea cards and letters, some have given christmas cookies, and some have helped with christmas prep and delivering items.  We have some blessings we can't even account for... some clothing donations, a pointsetta, and on and on.  Pal Mac has made videos and checked in often, rallied behind Shea....Bottom line is you guys are wonderful, we don't take any of it for granted... we appreciate you and your support for our son's rehabilitation and support of our family, and lastly for supporting my cookie addiction ( and helping me to gain at least 5 lbs or more this month... )

We hope that we can bless you all someday as well.  For right now we will continue to adjust to our new and hopefully temporary normal, try to catch up with sleep and count our blessings as often as we can when we start to feel overwhelmed.

Another big prayer request is this.  It is with a heavy heart that we will opt to not persue the imaging that would have been planned to see if mechanical compression remains in shea's mid spine ( the decompression from june, that may not have been complete, or because of so many structural changes may be recompressed. ) I think the test itself may be too risky because it could involve dye in the spinal cord.  Also even if we found he is still compressed, I don't think it would be a good choice to put him through any additional surgery to try to correct it.... just too risky for his delicate system, and too much for him to endure.  Prior to the domino effect that started in october i would have said shea had 75% of his baseline strength back in his right leg, and 50 ot 60 % in his left leg.  I hope and pray that once we recover from bedrest and atrophy, and once he is allowed to stand again... that we will get that much back once again.  I hope and pray he can get all that he had once back somehow.... but i don't think anymore intervention would be wise.   Please pray for a sense of peace and not mourning in this matter...

I think of how his life might have been if not here, with these hospitals and doctors... and i feel grateful.  Things could be much much different for him.  I think of how things might have been for him without his extended family... all of you.  We are blessed...even in trials.

Wednesday, December 23, 2015

dec 23rd... counting down to Christmas.

Shea had his programmable shunt placed on tuesday.  Everything went relatively smooth in regards to the surgery itself.  Post op drainage checks and shunt series look good.  Surgical pain is managable, and not out of the ordinary.

About 2 hours after surgery shea developed upset stomach, tachycardia and persistant headache.  When all these sypmtoms were still going strong by 8 pm it was decided he needed another rapid mri to make sure he wasn't having pooling of fluid outside of the brain bc of overdrainage, or any bleeding or problems from the surgery itself.  The MRI checked out just fine. 

Note - we were able to experience his first reprogramming after the MRI as the magnets from this machine will alter the settings on his shunt.  He was originally set at .5.  This setting is the "lowest" it can go, meaning it provides the most amount of drainage .... to keep pressure off of the dural repair.  The magnet from the MRI set him up to 1.5 briefly until he was reprogrammed. 

(public service announcement, no cool magnetic toys should be set on my son's head :)

By Wednesday morning when his symptoms were still intense, they decided he was probably experiencing low pressure syndrome, and his shunt was reprogrammed to 1.0.  It seems that this change is keeping Shea mostly headache and nausea free when he is laying flat in bed with his head of bed less than 20 degrees.  Unfortunately trying slowly and repeatedly throughout the day Shea still can't tolerate sitting upright, in bed or his wheelchair.  The head pain becomes severe, and it even escalated to vomitting today ... poor guy.... but he is more alert, eating a little bit and able to find comfortable positions most of the time.   They have good pain medication for him to use when he needs it.

There was talk of setting his shunt to 1.5 tonight to see if we could get further improvement of symptoms.  However.... for various reasons we are holding off on this until tomorrow now.
     - 1.0 is safer for the dural repair, so they want to give his body a fair chance to acclimate to this setting and only make one change per day
     - 1.5 would be the next setting to chose, however we can not go any above 1.5 in the recent future... so if we do this we really hope that it will solve the problem
     - there are some GI factors that may be affecting the efficiency of his shunt and some of his other syptoms.  We've decided to address that more thouroughly all day today as well.

Right now he's sleeping comfortably.  He's stable, and in a safe place to be going through this.  Although we want to be home in the worst way ... we know help and problem solving is just a phone call away here.

I would ask prayers for symptoms to resolve on there own by tomorrow.  Prayers if they don't resolve naturally that the 1.5 setting would give full relief.  Prayers that this is truely a low pressure issue, and not a shunt failure.  If anyone is interested he has a medtronic strata valve.

No matter what is happening here, you can't take excitement of Christmas and Santa away from this boy for sure!  He is asking non stop,.... how many days, hours etc until it's Christmas day?  So fun to see....  To my 3 at home... i'm sorry i'm missing out on this exciting time for you this year.  Hint hint husband.... pictures and videos from home would be i don't miss so much.

We're hoping for an ideal scenario to be able to go home on Christmas Eve if things fall into place for him tomorrow.  If this isn't meant to be.... we will make the best of it and bring the kulp tribe and Christmas to Bryant ave room 106.  We already have had our lights up ..... we shall see.

Again and again thank you to all of his cheerleaders who have supported us with meals, videos, hello's, assistance with managing the homefront and more.  We are so very thankful.

Monday, December 21, 2015

Monday 21st, # 9 Tomorrow

Today was another good day.
- He continues to not have leaking of CSF through his lumbar incision
- continues to tolerate sitting up well
- still has the extraventricular drain, so moving is a challenge, each time level of head changes the unit must be clamped and reset
- no fever, cultures remain clean!
- He had his MRI today.  To the surprise of all, even though each hour the EVD is draining 5 to 20 cc's of CSF off his system, his ventricles have not decreased in size.  A factor in this could be that the profuse leakage from the lumbar region is now closed.  The leak itself was acting to decrease pressure and now that the repair has occurred he has more of a closed system that he's not used to.  Although his ventricles are large his pressures are very safe right now.  More proof that in order to keep his system safe and to protect the repaired dura in the lower spine a programmable shunt must be inserted.
- We are watching a very small lesion on one of the 4 scalp incisions.
- Shunt placement surgery and removal of EVD is scheduled for the second half of the day tomorrow.  Best case scenario, if no problems occur we may have 24 more hours after this 9th surgery... and then be discharged to home.  I have hopes.... but also am being realistic.

Thank you for prayers that cover him.  I've felt blessed and encouraged by many of you.  Dan and I are exhausted on the home front and here in Buffalo Children's.  Fear definitely creeps in as well, and lack of sleep doesn't mix well.... but the encouragers  and supporters have been greatly needed.

I feel my son's little system, although he's a strong strong fighter, is a bit like a set of dominoes.  Fixing one issue, often opens pandora's box.  Changing anything to fix or stablize a problem, somehow seems to start another reaction.  I'm praying for this to be the last domino... no more ripple effects.... no more snowballing. 

Looking forward to being home, .... waiting anxiously.  It will be tricky managing his acute needs in the first few weeks, school break, follow up appnts in Buffalo... but one day at a time.

Right now looking forward to Christmas, however it ends up looking.  

Today our PICU room had christmas music, christmas lights, wrapping and card writing.... we will bring Christmas here one way or another.  Will update you all after surgery tomorrow....

Friday, December 18, 2015

stable and sleeping ( 8 surgeries down this year, hopefully only one left )

Shea made it through the surgery well... he's stable and sleeping heavily in PICU.

good news- because there was so much fluid leaking they actually found the defective dural site quickly and it was in the area in the lumbar spine they could access fairly easily.  Huge sigh of relief.
bad news - it was easily found because the area that was not intact was about the size of a "female thumb." Also it was at the site of the nov 13th tear and repair, but wasn't a rip or tear now... it was a few small holes that they stitched and in general the dura had become dysfunctionally stretched and the cord was "sweating or weeping" fluid out of it.   To repair this the best they could, a few sutures were used, and then 2 layers of a synthetic substance to help reinforce the dural sheath of the spinal cord.  ( to take shea's brain out of danger when his shunt was in failure and relieve the pressure in his ventricles, the ETV was pressure was better in the ventricles... and instead the pressure was more evenly dispersed into the dura of the spinal cord... the old dural tear repair site and the fragile nature of his dura from spina bifida and repeated surgeries could not take this new pressure, even though it was "normal pressure" )

Good news - the extra ventricular drain went in well through the same tract that the ETV scope had new pathways made through grey matter.  He's talking well, has good memory, has good neuro checks and no decline in leg function.

Bad news - the soft tissue in the lumbar spine under the 2 sutures that had closed the leak last sunday was a "gaping hole" according to the surgeon.  basically the skin and 2 sutures were protecting the spinal cord from the outside world and all of it's germs.  The docs are very worried about infection, but so far he is not showing any signs, is getting loads of cultures and blood work and is on antibiotics.

Good news - the drain is taking lots of csf off of him to keep the pressure near the repaired dura as safe as possible.  The manometer is set so that if any pressure rises above 5 it drains automatically, he is not clamped.  ( before he was allowed to go up to 20, and if over 20 for 5 min they would manually drain ) now they are keeping pressures extra low to protect the repair.

He is required to lay flat for the next 48 hours, no raising the head of the bed.  We are using a folded towel as a pillow, and he can log roll left to right.  They are watching the dressing closely to see if he's leaking any csf.  Late on Sunday if the leaking is absent, they will start to let him slowly sit up.

I'm thankful that this low pressure is not causing him headaches or nausea since it's a sudden change in the dynamics of his system... we hope that when he is allowed to sit up, this will continue to be the case.

If no infection and no leakage from the lumbar skin of csf, then on monday or tuesday they will implant the programmable shunt to keep his pressures extra low as they are now.

another piece of good news is that they could mostly visualize the orthopedic hardware that is left in the left lumbar spine and it's not lose or displaced.  He will continue to wear his brace at all times if out of bed for the next few months.

we have goals,... and a plan... let's hope it's complication free.  Thank you a million times over for all the prayers, encouragement, helps....  very humbling....and vitally needed.

in surgery now, what is the plan, how did we get here?

- Today's surgical plan:

All involved, neuro/ortho feel that a full exploritory surgery to find the leak is too risky.  There are 4 likely places the leak could be * the site that tore and was repaired in the lumbar spine on nov 13th, the site that tore and was repaired during the june surgery, * the front portion of the spinal cord where it had to be released from the vertebral column in previous surgery * the thorasic nerve root that was removed in order to place the cage in june.   Because of severe anatomical differences and scar tissue from his spina bifida and the previous surgeries they have to work from the top ( normal dura ) down and would be too invasive, make his long scar even longer and be too risky.  Of these 4 sites most likely 2 of them could be very difficult to fix.  The fear also with this method is that although his ventricular pressures are now "in the high normal limits"... that even if they found the tear and repaired it that the high normal pressure would still be to much and re tear the fix. 

The plan we have decided to move forward with is to focus first on getting his ventricular pressures to "low normal".  Also just opening the area of spine where we can actually see the leaking through the skin, and pray that it's there in the dura and obvious.  If so Dr Reynolds will repair.   ( Dr Li is not here, but has been consulted repeatedly throughout the last 24 hours and approved and tweaked our plan... Dr Reynolds comes with very good reports as well )  Thirdly the fascia, soft tissue, skin will be thouroughly reinforced from the inside out in layers, rather than just incisional stitches.

The next step to KEEP ventricular pressure low, so that if a dural repair is made it can stay intact, and if a significant leak can not be found and repaired that pressures are nice and low to slow the rate of leak.  A slow leak contained within the body is minor problem as compared to any leak that has a channel to the outside world.... they are saying we are extremely lucky that through all of this, since mid november that he has not contracted central nervous system infection.

How do we keep the pressures low?  He will again have an extraventricular drain / monitor.  We will again be in PICU.  Again, anytime he changes positions or moves the position of his head his monitor has to be zero'ed ( means a nurse comes to help with every single position change, even raising or lowering the height of his bed, or the angle of the head of his bed ) They are going to drain a significant amount of csf to decrease pressure, and watch him until monday or tuesday.  If the lumbar leak no longer can find a way out of the back with the better repair down there and the created low pressure system we will know he's headed in the right direction. 

We know that he needs lower pressure than the average kid, to protect the tears... so at this point if all has gone as planned on monday or tues a shunt will be placed.  He will have 2 mechanisms in place to keep pressure low now... the shunt and the ETV.  Today the resovoir will also be removed.  Another important reason to wait to place the shunt other than to make sure the "low pressure fix" can be accomplished and that it actually works, is so that we can have 48 hours of clean csf cultures from time of last external leak.  A shunt can be placed when there is infection or chance of infection.

This is where we are now.... below is how we got back here...

wednesday after discharge we had a nice 26 hours at home, some decorations were put on the tree, lots of hugs and cuddles were shared, and a sleep in our own beds.

- thursday afternoon we received the news that we knew we would, but we hoped we wouldn't.  The lumbar leak was infact Cereb. Spinal Fluid (CSF).

- Neuro had instructed that this type of leak was not one that could be left unaddressed, that it wouldn't heal itself without intervention.  If he was not showing symptoms or not leaking through the sutures / skin... then it could be done after Christmas, soon but not urgent.  

- However thursday afternoon the CSF again began to escape through the incision and sutures.  The risk of central nervous system infection is too great.  The original plan from both Dr Li and Dr Sanders was that the dural tear would be repaired by ortho at home....   after evaluating the complexity of shea's case, the fact that Rochester neuro doesn't deal with ETV's, the fact that some staff at Strong didn't even know if Rochester neuro would take Shea back as a pt, and that Dr Sanders wanted a neurosug to be present during the procedure it became clear that Buffalo neurosurgery would again take point on this issue.

- by 5 pm on thurs after doctors had conferred "shea's" personal resident, Dr Meyers called and said Shea needed to be admitted that night so that cultures could be started, mri, bloodwork etc...

It's now Friday the 18th, one week before Christmas, and he has just been wheeled back to surgery.  He tried to be so brave, but the tears and the screaming and calling out have come.  I will see him in a few hours, but ohhh my heart is broken for him,... and for my family at home.... what this son of mine has been through.

Monday, December 14, 2015

tentatively hopeful !?

Day time has again brought more stable pressures.  That is his trend, good pressure when awake, pressure rises when asleep.  He had many spikes last night.  Nursing was in and out of his room all night.  More fluid was taken off of his ventricles to relieve the stress.   It will take another few days to get the results of the clear fluid that was leaking from his lower back, to rule CSF leak in or out.  The plan since 7 am is to try the next 24 hours without draining excess CSF off his ventricles when his pressures rise incase it is a lumbar leak, and to see if he can still be asymptomatic.    ( I really wonder if we’ve had a slow leak for months that wasn’t diagnosed, or if one of the two previous dural tear repair sites was stressed now that CSF flow was improved after the ETV procedure….) It’s a bit of guessing for now until we get more tests back. 

Tonight they will watch him carefully, and if his pressures rise above parameters we will attempt not draining him to see how he responds in regards to vitals and physical stability.  On call neuro will walk the night nurses through all the decisions with Dr Li’s input.  He also had the rapid MRI again today.  The lateral ventricles are a bit reduced compartd to last week and the cisterns that the 3rd ventricle now should drain into bc of the ETV show fluid in them.   We will see how it goes without draining him for the next day, and there is a chance the drain can be removed in the next day or two.  It’s likely we will have another rapid mri soon to recheck the ventricles after not draining for 24 to 48 hours.
Once the lumbar fluid leak results are back we can take all of this and try to make some decisions.  It sounds certain that we will be in ICU until tues night or wednesday at minimum.

If we do have a csf leak ( which we continue to hope that we don’t !!), Dr Li would help to decide if it needs to have a patch repair or not.  If so then Dr Sanders would do this in Rochester after we are dc’ed from here.

Our update today is a whole lot of unknowns,  but he’s comfortable and playing.  So many in ICU are grave and fragile compared to us…. So we are thankful. 

The barbershop quartet just sang their way through the icu halls and we’ve hung a few Christmas lights…. So we are hopeful  for an easier night with less bells and alarms, and good progress tomorrow.

Sunday, December 13, 2015

evenings and nights .... our witching hours

Shea had a really good day, followed by a awful evening development. The good part of the report is that fever was very low or absent today, no pain, no headaches, and he spent a good deal of the day up in his chair. He didn't have any high pressure issues either.

Saturday morning the dressing from december 4th back surgery was due to come off of the lower spine. Saturday I commented to the nurse how sweaty he was, i needed to change his gown because of dampness on his back.

Again today another "sweaty back". I decided to take a look at his incision just to make sure. As i watched him a drop of clear fluid came out of his incision. I dabbed it away with gauze. Then another drop, then another... and this continued.

I asked the nurse to paige neuro. They came and assessed and called Dr Li. It was decided to take a sample of this fluid to send off to the lab. We are hoping above hope that it's simply serous drainage, and not CSF leaking. ( We had suspected CSF leak during our emergency room visit and admission in november, but they ruled it out. During the Nov 13th surgery ( # 4 of 7 since june ) there was a dural tear which was repaired.

This was all very painful for shea, even with morphine. The leak was from incision on his keloid...which is very sensitive tissue. He would cry out that it made his legs hurt and his pulse went through the roof. I hate hate hate seeing him struggle over and over again.

I asked them to give him versaid to calm him down and possibly make it so he wouldn't remember as much, because the next step was to put 2 stiches in to close the leak to outside air.

Prayer requests... that tonight his pressure would not spike, that temp would not spike and that the steady flow of clear mystery fluid is NOT a CSF leak. Even with none of tonight's issues considered we have to make it through at least 2 full days and nights without pressure spikes of 5 minutes before they will consider pulling the csp monitor and csf drain.

Thank you for your ongoing support and prayer.

Friday, December 11, 2015

Crash Course in ETV... aka at least we were home for a day and a half.

Disclaimer! - if you are only looking for today's update skip to the last few paragraphs.

Shea was discharged from Strong and our ongoing spine saga ( see last blog ) on monday.  He was able to spend a lovely tuesday at home.  I even made it back to work in the office rather than working from the hospital for a day, thanks to nurse Renee coming early.

Wednesday we had a planned follow up appointment with Dr Li in Buffalo.  This was an appointment I had scheduled  due to the few days of shunt related symptoms in November that sent us to the emergency room right before surgery number 5 and 6 on the spine.  ( His ventricles were enlarged )  I had asked Rochester neuro about follow up imaging of his brain before discharge, and they responded with a "no" because his shunt type symptoms had cleared.   As some of you know, I've had a less than ideal track record at home with neurosurg.   I asked Dr Li to see Shea so i could rest easier, and although he had no openings... he made a spot for us.

Upon exam, from asking some questions, and checking the pressure in the back of his eyes, Dr Li didn't want us to return home without a rapid MRI first.  His gut was correct.  Not only had the ventricles not returned to baseline, but they were actually significantly larger than they had been during our ED visit a few weeks ago.  We were admitted right away... and the plan was made for surgery friday, after blood work and cultures finalized.  Shea's shunt tap showed complete blockage of the proximal shunt catheter.

We were given the option of doing a full shunt replacement or if a more complete presurg MRI showed proper anatomy ( enough space to comfortably avoid the basilar artery ), we could opt for an EVT.  EVT is endoscopic third ventriculostomy.  I had never heard of this procedure.  I'm not even sure they do them in Rochester.   As a mom who is always really well educated on my kids conditions and treatments, this was a shocker for me.  I am very pleased they let me weigh in so much on the final decision.... but having to make that decision and learn as much as possible about it in 24 hours has been a load on my shoulders.  To over simplify it, instead of the shunt tubing dumping the excess cerebrospinal fluid into the abdomen,  no shunt is used and a hole is created in the base of the third ventricle so that the fluid can empty into the natural cisterns and passageways of the brain mimicking normal drainage.

The pros of EVT are that it is done with the scope, doesn't require any hardware, and would not have tubing that needed to travel through the neck and into the abdomen.  Other pros are that if you successfully get through the first few years without a failure, chances are very good that you won't need an EVT revision or shunt for the rest of your life.  Also a somewhat lower chance of infection, and there is no "hardware" that can malfunction.  Also EVT can only be done during times when the ventricles are enlarged.  If we didn't try it now, there may not be a good time to try it in the future if needed.

It is not a magic fix to be sure, especially in the population of spina bifida.  The early failure rate , meaning in the first few months specifically and in some cases the first few years is just as high if not higher than shunt failure in sb population.(50%)  The hospital stay is longer, and the follow ups after surgery are more frequent.  Also some risk of change in short term memory or hormonal regulation are a rare side effect.

You can see why this decision was tough... EVT would mean more upfront work and risk, for a hopeful better long term outcome and permanant solution.  Opting for the shunt may give us better initial success...but in the long run just as likely to fail or more likely to have infection.

I sense that God orchestrated catching this complete failure and dangerous ventricle size while we were in Buffalo with Dr Li and still stable...  not while in an emergent failure scenario with likely seizures, loss of consciousness etc etc, and in a position to not be stable enought to get to Dr Li for intervention.   Dr Li seemed to be leaning toward the EVT, even though he was clear it was our decision.  I did stress over the options, but in the end decided to go with what it seemed the doctor was suggesting because he has earned my trust and shown repeatedly that he is vested in shea's outcome and well being.  ( i've never seen a surgeon walk the stretcher from pre op to surgery himself... i took notice once again )

So, where do we stand now?   The EVT was a success and done with technical ease.  His non functioning shunt ( brain and neck portion ) was removed, the distal catheter ( from his neck to his abdomen ) will stay in place because it is harder / more risky to remove this than to leave it alone.  He has a resivour in place that will stay permenantly.  This is so that if he does have failure symptoms they can still do a "tap" to get information or to drain excess fluid quickly.  He has a pressure monitor to tell us what his intraventricular pressure is.  It needs to stay below 20 or CSF will have to be drained.  Shea's pressures were beautiful, < 10 until 8pm.  We've had a couple of spikes above 20 that were short lived.  When he lays on his R side he's in the high teens, but it's better when he's on his L side...staying in the low teens.  Shea's also showing rapid heart beat, 170 at times while asleep and on morphine.  The plan was to let sleep and morphine lower the pulse, but it hasn't been successful yet.  They are discussing whether or not to do an ekg tonight.  For now they are giving an additional bolus of IV hydration.  We will stay in ICU until Shea tolerates activity and position changes with good pressure and the csf pressure monitor is relieved.    He also of course has a headache, but that is to be expected after having people poke around in your brain all day right?!

We are "cautiously" optimistic... a phrase we've heard just a few times in the last few months.  I don't know if he will recover brilliantly and we'll be on our way home early in the week.... or if the EVT won't take and then we end up shunting as well.  Passing of time will bring that to light.

Up until wednesday my mind was so consumed with his lumbar bone healing and the outcome of his hardware fixating and fusion succeeding that his shunt hadn't even been on my radar.  Now... it almost seems that the spine is getting pushed out of the scene.... as we focus on this now.  We were supposed to have lumbar incision stitches removed on tuesday along with our first weekly xray to check the integrity of the remaining right sided lumbar hardware.... so we shall see.  Plan B may have to be made.... looks like a temp has just started to emerge as well.  Expected after such a day.  ( yes he's on lots of preventative antibiotic again )

If you've read this far, you are a trooper and should earn a prize.  Thanks to everyone again and again for the helps, prayers and encouragement.... we shall see what the next day or two brings.

Saturday, December 5, 2015

searching for the finish line

Since last writing we did in fact make it home for thanksgiving.  We have been blessed by many with help, meals, and encouragement.  My last entry was hoping for the homestretch.  It was not to be, and a whole new race has been started.  The last 6 1/2 months for Shea has been a grueling marathon.  We have all tried to refuel and refresh, but the run has been long and uphill.  Right now we do not see the tape of the finish line, and that makes it harder to keep the pace.  My boy is now up to surgery number 12 total, 6 of which have happened since June of this year.  I will be honest and say I do hold tight to the fact that he is stable from a medical standpoint, and his "general health" is good.  We are much luckier than so many others who have children battling life threatening problems.  I do give thanks for this.   I know of a sweet baby girl who we played briefly with last week on the play deck... who has gone to heaven without warning.  Our struggle can never compare to so many out there.... but we are tired.   We are angry...without anyone that is currently involved to really be angry with.  We are angry with spina bifida, we are angry with 4 years in an institution causing malnutricion and health problems that could have been avoidable that likely contribute to much of this struggle, we are angry that a boy who should be racing and jumping and wrestling and making messes in the mud is laying in a sterile white hospital bed again.  But... we are supported and blessed in many ways.  So we are humbled....  and we hope hope hope for a light at the end of this all. 

We were able to get home the evening before Thanksgiving, with a drain.  We had a difficult but much needed 7 days at home thinking and hoping we might be ending the race,... but as we pressed on, each day showed clues that the end of our run was not to be.

Drainage didn't stop as it should.  Drain site deteriorated, low grade fevers persisted, trips were made back and forth to the clinic for observation, watching, waiting.  Wednesday night the drain hole opened wide and a rod was clearly visible, and also resting in a location it didn't belong.  At the same time another wound was forming from pressure from the inside out because of one of the new lumbar screws that we now know had started to loosen and back out of it's secure spot in his vertebrae.  Shea followed all the rules, infact we gave him more rules to follow than the doctors instructed... but his body and bones wouldn't hold up once again.

Thursday was spent outpatient, appointments, planning, scheduling, booking, xrays, lab work and on....

Today the screw that loosened was removed, and the portion of the rod that moved had to be cut.  They did decide that because it doesn't seem to be infection based, that it would be wise to close the incision for now, rather than rush into the wound vac.  That will all be watched and assessed carefully over the next few days.  I am thanking God that the very long central incision did not need to be reopened today as it has 5 times in the past.  Another small blessing is that the stitches were ready to be removed on that long main incision and they were able to do that under general anasthesia today and not make Shea endure more anxiety and pain of having this done while awake. 

We have started a rather aggressive regimen help him control his anxiety and panic type attacks with 2 medicines, and a plan for counselling related to repeat medical trauma.  This prong of treatment I feel is just as important at this point.

Our next phase of the race is solving mysteries.  We need to get to the bottom of why his bone continues to reject hardware, why every tme we fix a problem it causes 2 more.  Between what the doctor has suggested and what I plan to ask for, we should be investigating nutricional iput, GI efficiency of absorption, bone density issues, allergy, continued ruling out of infection and possibly working with endocrinology.

We will watch anxiously to see how the wound repair progresses, and if having fixation on the left side of his lumbar spine only will be able to fuse and succeed.  We have been given some options of what may need to happen with larger more involved surgeries of anterior fusion through the abdomen, or pelvic fixation points if it does not maintain intact.... but I would like to not think that far ahead yet.  We will take saturday and sunday as they come.  We are on the surgical schedule for monday for either wound vac application or the surgery mentioned above... but our hope and prayer is that none of those will have to happen.

As for the rest of the family.... the kids are strong and resiliant, but could also use your prayers... especially danielle as all of this takes it's toll on them also.  Dan... my partner.  Thank you for all of your hard work, and your love for our kids. 

Thank you to all who are helping us through this is many different ways.  I have an image in my head of the family trying to get shea through this race toward the finish line, and many of you offering sips of water, clapping, cheering, manning the first aide tent, directing traffic... etc etc.

We will hit the finish line at some point... I'm just not really sure when... so until then... keep on cheering.   Thanks....

Sunday, November 22, 2015

Hoping for the homestretch...

It's been a few busy days since the last update.   So far everything that has been tested is still negative for infection.  CSF leak has been ruled out.  By Friday evening the shunt type symptoms had really calmed.  The drainage began to slow, but was still too much.  Saturday was spent waiting 1) to see if the drainage would slow enough to not require intervention and 2) waiting for Dr Sanders to come home from Boston. 

By Sunday morning it was evident that the drainage was still too much and would need to be irrigated, and treated with antibiotics so that it would not turn into infection... it was also too large to resolve itself anytime soon. 

This morning I was very anxious because the headaches returned and some light sensitivity....The hope is that once the hematoma is gone and not stressing the body or causing pressure in the lower spine region that the shunt symptoms will go away.  Shea has been incredibly lucky that he's made it to 9 years old and has never needed a shunt revision.  My hope is that his shunt can clear itself and that this all will come to an end soon.  I'm going to be optimistic!

Right now it's hard to tell what the shunt will do as he is still being asked to lay flat and is also on strong pain meds.  Hopefully by tomorrow we will get more upright and be on a less rigid medication schedule so we can see what happens.

He does have 2 drains in, and they are doing their jobs.  The surgeon said that if things go ideally, we may be able to go home in a day or two, and that the drains would go home with us.  I could manage them from home.  The next 24 to 48 hours will tell us a lot... again i'm going to be optimistic and say he'll be eating turkey from home, not on the 8th floor!

Thursday, November 19, 2015

Shea's admitted again, drainage problems / and csf leak or shunt issues

Shea continues to battle an on and off fever.  His drainage is much more than it should be at this point and he's been needing dressing changes multiple times per day.  It is confirmed from imaging that he has a very significant hematoma.  The question is... may he also have a csf leak from a failure of fridays dural repair during surgery. 

Originally until yesterday evening, csf leak was thought to be low on the liklihood scale.  Then last night he developed a severe headache, worsening when upright, and we watched him through the night.  By morning he had light sensitivity and eye rolls.  For a bit he even had mental status changes, ( not able to say the alphabet etc ).   So of course we were off to the ED.  Dr Sanders is in Boston, and Dr Cook has stepped in to cover in his absence.

So far the CT scan shows enlarged brain ventricles.  Now we have to figure out why.  Neuro here at Strong stated talking immediately about shunt revision surgery, but i strongly advocated and was backed by others ( in buffalo neuro and roch ortho ) that  we need to rule out other causes before we jump to that conclusion.  Right now we have lab work off to test the fluid that is draining so profusely right now.  ( they did a needle aspiration )  Once we find out if it contains CSF ( cer. spinal fluid ) we will know which direction to take with treatment. 

Thank you for prayers not only for Shea here in the ED, and for doctors to be likeminded and on the correct track... but also for Dan at home, and the trickiness of managing the family, and all that entails that we usually do as a team. 

Shea has been in ED for 12 hours now... we were officially admitted at noon and waiting for a room, and i'm told one is opening up now in the children's hospital and we will be moved soon.   I will keep you posted as we know more.... 

Sunday, November 15, 2015

A pretty good day today, to get ready for tomorrow's very busy day...

I'm yearning for my pillow, so this will be short and sweet...

He was able to go off the morphine today and is doing well on an oral pain med instead.  He also spent the second half of the day off of his IV fluids bc he's drinking well (ish)

After midnight tonight he will again be nothing to eat or drink to prepare for tomorrows MRI under sedation.  He will be given something by IV to relax him before going into sedation so that he doesn't fight and panic to protect his back ( and his spirit xoxo )

Dr Sanders is allowing him to sit up in the recliner without his brace, so that has been helpful for his pain control and his anxiety.

He is still fighting off that fever.... when the tylenol wears off it goes up to 102, we catch it with tylenol and then it goes back down.  It would be great if the fever breaks by tomorrow.  Post op fever is completely normal... i'm told no real intervention as long as vitals are good and pt stable, unless fever goes past post op day 3, then maybe some blood cultures to rule out infection...but it's unlikely.

He did great with his sitting, up three times for an hour each time.  At first his legs are very painful, i think bc of dural tension....but after positioning and getting settled his pain calms down with sitting up.

His brace was adjusted today, but it's still not a good fit.  The orthotist that came thinks a new one is needed, because this one has been adjusted so many times and shea's alignment and edema / size has also changed so many times.  Not to mention the first one was made in june, and 9 yr olds tend to grow!  He should be casted for this tomorrow, with a one day turn around time. 

He enjoyed some nibbles on real food today, and especially that chocolate milkshake :)

Dressing change is also scheduled for tomorrow as well.  That's all i can think of for now...  thanks for checking in.   

Saturday, November 14, 2015

Saturday's Update ( 24 hours post op )

We are now 24 hours out of surgery.  For the most part it been a good day.  He is staying comfortable as long as he's not changing positions.

Goals met - foley cath out, one more IV line out, sat up with mom for 15 min, keeping all his liquids down.  Most of the day vital signs have been good.  He is starting to help mom with the rolling, check, check, check.

Little hiccups - shea had a fever of 102 today for a while, then tylenol brought it almost back down to normal for 2 hours.  After the tylenol started to wear off the fever went right back up to 102.... so we will be keeping a close eye on that.  They are wondering about atelectasis, but his sats have been pretty decent today and his urine dip test was clear.   Also his brace doesn't fit very well and needs to be adjusted again, it is getting us by for now, but will feel much better once it's "just right" again.

He sat up twice this evening.  The first time he was so very very anxious, but the second time it went better.  15 min and 8 min, so that's good progress.  Mom sits right behind him so he feels like his back and head are supported and this keeps him calmer.  We'll try "solo sitting" in the recliner chair tomorrow hopefully. 

That's about it for today... rest and recovery and a little bit (lot bit) of work. Still lots on the horizon to meet criteria for going home, he is chuggin along.  Hopefully he can conquer that fever and start weaning off the morphine tomorrow.   Until then....

Friday, November 13, 2015

So Far So Good...

Shea's surgery started at noon today and ended by 530 ish.  Long.... but much much better than the 13 hours in surgery last june for sure.   He is off oxygen, has pain but it's not severe, and is stable and recovering.  He looks much better than he did post op in june.

Following is way too much info for most of you! but if you're interested it's therapuetic for me to write it all out, and helps me to have a written record when my memory starts to fail and I need to look back :)

It was discovered from last weeks xrays, done when his screw came through his skin again that:
- his lumbar kyphosis ( think of kyphosis as a really slumped lower spine position, that because of it's yucky position can't support the spine above it well ) had worsened as compared to the mid october xrays when he had surgery then.
- the reason his kyphosis was progressing a few months ago, is because the fusion of the lower segments of his original surgery had failed ( due to his spina bifida, bone integrity and healing is not always ideal )
- additionally the kyphosis progressed since mid october because in the last 3 weeks the lower most screws did start to come loose from the vertebrae they were placed into. ( you can see it plainly when comparing october xrays to last weeks)

For these reasons the alignment of the midspine continued to worsen, pushing the screws more prominantly into the skin of his back.... the perfect storm.

The concerns going into today's surgery were:
- the only way to correct the progressive and worsening lumbar kyphosis ( which is the opposite curve of a natural lumbar spine, lordosis) was to lengthen his rods, which requires inserting more screws.  His thorasic rods were removed and longer ones put in place.
- the lumbar vertebrae that would need screws posteriorly are right at the level of his spina bifida lesion, leaving less boney material to work with, and possibly less bone integrity in general
- because of the spina bifida lesion, the thecal sac, his keloid scarring etc etc, visualization of the area was harder than normal, and Dr Sanders said he had to decide placements by feel rather than by sight.
-there will be concern over the next months about whether this fusion will "take" or not

The good news is!!
- Dr Sanders feels the "purchase" of the screws he put in today was very good.
- very little blood loss
- No loss of cord conduction through the surgery which was montitored by electrical studies, and his legs although heavy and weak are moving right now!  huge huge huge sigh of relief
-they successfully used bone graft from his pelvic crest
- because of the soft tissue complexity of that part of his spine the dura did get torn or cut with some csf leak, but it was promptly repaired and the leak stopped.

The plan:
- bedrest for now, allowed to roll side to side with help at least every 2 hours
- We will be getting a complete spine MRI from top to bottom under some sort of sedation before we are discharged. ( this will help Dr Li address the size and stability of the syrinx )  Yesterday's non sedated MRI gave us only a few good shots, because shea's panic set in and they couldn't get him to be still enought to complete the test. 
- We tried oral valium before the surgery today to help with the panic, but it didn't give any relief.  Thankfully he is much calmer now that it's over.
- It sounds promising that he will be out of school for the shorter range of time, compared to the longer range that was originally a possibility
- The fusion site will be watched closely.  If it doesn't fuse from this posterior approach, anterior approach through the abdomen may be needed... but we are going to stay positive and not even think about that right now!
- tomorrow's goals will be for the tummy to wake up, so that he can be progressed to a soft diet, hopefully remove the foley cath, and find out how much longer he'll be on strict bedrest.  My goals will also be to get all his meds straightened out, bc none of his baseline home meds were ordered. boo
- also we'll start the weaning process from the IV morphine if able.

Thank you all for your support, concern and prayers.  I will keep you all posted.  

Friday, November 6, 2015

Kill the Giants ( one step at a time for anyone else who needs it too )

I'm sitting down to prepare for teaching sunday school this weekend...  I'm a few sentences into the lesson book and i think some of this might be for me, and for anyone who is weary. For those of you who have faith and know God is powerful and the maker of miracles.... but what feel of late is far from what you know to be true. 

I know God works all things together for good....but i don't always feel that way lately.

I know God is the maker of miracles.... but i don't always feel sure we'll get one.

I know God counts the hairs on our head and cares for us deeply.... but i don't always feel convinced
some days.

I know all current struggles are, later, for a reason that God understands .... but I don't feel like being encouraged by that at this very moment.

I know if God hadn't placed our children in a family and in this family, that their health, well being and even life would have been at risk.... but I still feel at times like i haven't protected them from harm.

Gasp, shock, oh me, oh my.... did a PW just write those things?  Sorry... yep, i did.

It's a good thing I value the truth and knowledge of what  I know over the emotions that I feel.  None the less....feeling those things aren't fun.

This is the update I shared yesterday on the next step for Shea and our family...

Starting over... i'm sad and frustrated to report that our shea has had bad news. Thursday night his repair site failed and for a second time we could see his screw at the base of his woundbed. This time a fever is present also. After today's appnts with Dr Sanders, xrays, lab work and a pending MRI we have a plan that we aren't very excited about. There is no safe way to remove the most problematic screws while keeping the spine stable and the cord safe. The junction between the t/spine and the l/spine has shifted. This needs to be fixed to realign his spinal column, this means longer rods, a revision of the original surgery that occurred in june, another significant hospital stay, more weeks out of school, and more months in the back brace 24/7. We would love your prayers for his spirits and our family's strength. This surgery may happen next week.

So I'll keep on preparing for Sunday School and see what it has to tell me (you/us)....

From Numbers 13 and 14. 

The Isrealites worried that their enemies were bigger and badder than they really were.  ( yup I do that )  They grumbled and were discontent and wondered about past decisions ( yup I do that too). 

Moses interceded for the Isrealites on their behalf  ( i have people doing that for us).  Moses taught that by losing trust in God during the hard times, they were losing sight of the many miracles that had brought them to this very point in life ( check, check, guilty... )

Joshua and Caleb did not give in to doubt or self pity and they were rewarded.  ( yes please,God show me how, sign me up )

God kept his promises ( I know He will. Now my prayer is let me feel like He will for my son)

You may have to work for, and claim the reward that God has promised, you can't be passive or lacking courage, and you also have to realize God will help you through this. ( noted! )

God calls on his people to have courage and stand their ground.  ( yes God, I will )

We are reminded that we can't understand God's reasons, things won't make sense to us now.  ( I can certainly confirm that )

God tells us we will face "giants" of fear.  He guarantees us that we will face "giants" of challenge that will make us feel near defeat, uncourageous or less than sure footed.  He also tells us we can destroy those giants with his help, or if we are too weak he may just stomp on that giant for us. ( thank you Lord, keep telling me again and again, I'm a little slow sometimes... maybe i need an IEP too )

Thank you God for using what I am suppossed to teach the children on Sunday, to speak to our circumstances right now.   I hope this applies and encourages some of you who may be reading also...

Until we meet again... kill the giants.

Wednesday, October 7, 2015

home... and he's "had enough"

Shea is home from his surprise day of surgery.  He's having pain, but now resting well and stable.

The story goes...

there has been a screw from the summer's spinal surgery that has been giving us trouble right along.  Especially since the back brace came off, and he's been allowed to put more flexion through his spine  The screw was stable in the vertebrae itself but just giving too much tensile strain on the skin that's over it.  It protruded too much for his tiny little frame, but that is where it had to be placed to fixate his spine in a way that would restore signal through the spinal cord.

We've been very careful to keep it as protected as possible.  I know shea's skin well, and the last 2 days i started to notice some purple spots in this area, probably indicating deep tissue injury from the "inside out".  I even took him into ortho for a check yesterday because of that and some other concerns.

The morning was fairly normal, he was getting ready for picture day... getting hollered at for getting toothpaste on his tie that he was so excited to wear, and then arguing over a dictionary with one of his siblings. Yes, a cotten pickin' dictionary turf war was the the precipitating factor in this stupid, no good day! 

Shea was on his hands and knees. He and a  sibling (who is in the witness protection program currently) were tugging and war'ing on the above mentioned dictionary.  He was manhandled a bit, lost his balance, and whammy, his "bad spot / lump / pain in the butt screw" smacked the floor.  He hollered at the culprit, but was equally guilty in the ordeal.  Within a few seconds he was better, and on his way to getting in his chair and backing up his backpack. 

10 min later i was about to get him ready to catch the bus and i realized his nifty dress shirt was covered with blood on his back...  mom took a look, and discovered a tiny little puncture site, with a shiny silver screw peeking out at me.

Of course with everything so close to the spine, that has to be dealt with right away to protect from infection.  By that afternoon Dr Sanders took him into surgery.  They excised the broken area more to get clean margins, irrigated, put in antibiotics and stitched him up.  Before stitching him up they did adjust the head of the screw a bit to try to help with the tension on the skin.  ( i wasn't aware that the heads of those screws are adjustable in comparison to the shaft of the screw... so it wasn't actually removed fully, just adjusted ) 

Also very surprising to me, they re opened 4 - 5 inches of the original spine incision i'm told.  they needed to make sure after the adjustments that everything looked stable and secure and that there weren't any signs of infection. 

The dressing will stay on for a week to keep it as sterile as possbile, and then we'll take a peek at the MD office to see how everything is healing.  The TLSO brace will be worn when he's moving around, not for bone integrity issues, but to keep the tension of the skin over that area as controlled as possible so that it will hopefully heal. 

There is also a possibility of more hardware needing to be added to the lumbar spine because of some increased kyphosis ( curving ) of the non surgery region vertebrae....which is a part of the problem with the hardware being so close to the skin in the T spine right now...( however i can't process that currently. ) We were offered a monday surgery time to do this, but i can't wrap my brain around any of that right now, and think i would rather procede slowly, with one thing at a time.  It just sounds like in the next few days we'll be watching things and talking through options.

That is the story for today.  I ask for you all to pray for his spirit again.  He's not a happy camper.  He fought off the anasthesia like Rocky.  The anasthesiologist said he couldn't rember a little guy that won "against the happy gas" for as long as shea did.  Rocky did not want to be on that table again for sure and he was letting everyone know it.  Once he woke up, he did not mince words.  He said, "I'm going home, get me out of here".  And he did.... thankfully.

Tuesday, August 25, 2015

slow and steady wins the race

I've been wanting to take a moment to update you on Shea's recovery lately.  We are still being patient and reminding ourselves that cord compression healing can be slow and take months...but he is still making progress!  Almost every week we see one or two new struggles conquered that he could not a do few days prior.

His endurance for mobility on his hands and knees has gone way up.  He's no longer falling down onto his belly in quadriped because of his hips giving way.  He is back to getting from point A to point B in our yard.  The sudden increase in shea's dirty laundry is a happy change for this mom!  His speed is even improving and he's not tempted to scoot around on his butt like he did a few weeks ago as often now.

When he is moving on his hands and knees, he can now advance one hip and then the other like he used to!  This was impossible for him two weeks ago.  He has to focus and work at it.... but he is doing it!  He's also getting in and out of his wheelchair with much less effort and strain completely on his own.

Many improvements we've seen in the last couple of weeks are at least in part, directly related to a decrease in the spasticity of his hips that we were struggling so much with.  It was really limiting his progress for a while.  He started using a special positioning pillow while he slept at night to keep his legs out of the "tight" positions.  He didn't love it, but it really decreased the time it took every morning to get his legs to loosen up and cooperate.  I am hoping this decrease in spasticity continues, and that it doesn't get problematic again.

Now that the tone is getting manageable and shea is spending some time weight bearing on his legs we notice he has a very significant leg length difference.  (maybe bc his spine is now straight from the scoliosis correction, previously "even" legs are now uneven because the pelvis is in a different position.)  If you notice pictures with one shoe on, one shoe off, or weightbearing with a book under one foot....that is why!  It's hard to stand on weak legs if one isn't touching the ground!  Once he finally gets the ok to stop wearing his back brace and we can start to use the HKAFO's (long leg braces) again, we can correct this with brace adjustments and a shoe lift.

The supported standing, with shea using both arms to hold himself up has progressed from seconds to minutes :)  We still have to stay close as his legs can give out, but it's progress none the less.  Our goals will be that he can start to stand with only one arm support, so he can use the other arm for play and function.  Also, that standing would again become a preferred position and not "this is too hard i hate it" type of activity :)  The tall kneel strength is also coming along as well.

This week, we finally have started bringing in an additional physical therapist to work with shea twice a week.  Shea is getting a little sick of mom playing PT and a few times we possibly weren't each others favorite people!  For mom the realities of juggling work, managing the other kids, the medical cares, doctors appnts etc meant that some days PT wasn't getting done quite as much as it  ideally needed to be.  That is why we have a new face around here these days.  Shea enjoyed her quite a bit, and publicly declared she was "more fun than mom" during PT time.  That is fine with me!

The cord irritability is still affecting the bladder etc, and we are treating for a UTI currently.  It was caught early though, and i think it should be a quick fix.

I could go on and on... but those are the main points.  Thank you for continuing to pray him and us through this long journey.  I'm very thankful that we continue to see progress so he is motivated to keep on working hard at it.  We've also had lots and lots of red tape about getting that blasted stander that he please pray those road blocks will be lifted.  Everyone is sick and tired of getting weekly phone calls from me!

Hopefully the next update will bring news of a "back brace burning party", or something equally as thrilling.  Although he has his moments... i'm still in awe of this kid's resilience and for the most part his positive attitude.  Wish we could bottle that!

Thursday, July 16, 2015

We are not consumed

This I recall to my mind, therefore have I hope.  It is of the Lord's mercies that we are not consumed, because his compassions fail not.   - Lamentations 3:21-22

I write from a different place today than i did a few weeks ago.  

Shea's pain is much better, and our little courageous fighter can now try new things, accept new challenges and push himself because he isn't drowning in pain.  This makes mom very happy.

Although he is still unable to bear weight through his legs in standing or kneeling, he is making progress in many other ways.  ( as those of you know who have been subjected to my facebook videos!)

Probably amongst his biggest accomplishments lately, is that he is tolerating his every day wheelchair much better, and at times propelling it himself!  He can roll from left to right without help.   He can also get up into hands and knees on his own now... andhe has a new "scoot" that he has taught himself which can get him 10 feet or so at a time.  

Shea is also getting out of his wheelchair to the floor on his own, pulling himself up into sitting position, and in general spending much more time out of bed!

Since my little man is more comfortable, and making progress that i can see each week, mommy is coping better.  I have less fear and more hope.  I can focus more on the progress and focus less on the "what ifs".  For this I am very thankful.  Recovery is as much mental as it is physical for the "patient" and the "caregiver".

We do have a very irritated screw from shea's spine which is causing a pressure "hot spot" and we are having to be very careful that it doesn't open up and form a wound.  He's been swimming to exercise his legs and trunk as well.  Also, drum roll please, he's figured out how to drive his jeep again!

Shea also begrudgingly can put on his own braces and socks... although he's not so motivated by that!

We await his wheeled stander.  I appears it will be at least another month and a half before we get through all the insurance red tape... so we try to be patient.  He continues to use a borrowed one each day, but it's too small for him and causes some pressure areas in regions that it shouldn't, so we must limit his time it it to prevent sores.  I am very glad we have it though, it is really the only way to truly get him upright.

His next appointment is tuesday, and we will talk about return to school plans.  For now we have a tutor coming each day to help him catch up on what he missed during the school year.  

I am happy to report that "we are not consumed".  The first few weeks home were at times awful and terrible.  Now we are learning new ways of life and making them ours... for now.   We have our eyes set on the prize, and will keep pushing and perservering until then.  Life is not at all easy, or calm... but we are no longer being caught up the the fury of turbulant fear and pain and trauma...There is hope, and encouragement, and because of that, we are blessed.

Friday, July 3, 2015

The question I don't know how to answer

the cord compression just before the
emergency decompression surgery.

The answer is - different depending on what moment of the day you're asking.

The question is - how is shea's recovery going?

As Shea works through the aftermath of his spinal cord compression, these are some updates on his day to day life.

I will start with all the blessings, and positives.  Let us take nothing for granted, and hope that each small bit of progress is one step closer to getting his full pre cord compression function to return.

-We are happy to report that shea's awful vertigo is still completely gone.
-He is dealing with his loss of function better than could be expected emotionally.
-In regards to endurance and strength, he is working hard to tolerate sitting up, or being in his stander for about 3 hours all total during a typical day.
-He's managing 20 to 30 minutes at a time in a seated position at times.
- now able to tolerate some time on his stomach and also propped on pillows in a hands and knees position
- a few times a day he manages to complete a roll in bed without our help
- now off narcotics and using regular scheduled doses of tylenol through the day and night.
- to date we have some kind of muscle activity in the hip flexors, adductors, quads and hamstrings.
- today for the first time shea supported himself in quadriped ( hands and knees) for 20 wobbly seconds!
-Shea's stander hasn't arrived yet... we have a borrowed one that is a bit too small for him, but he is using it every day, and he is no longer anxious and nervous about using it.
-Shea and the family have appreciated the cards, meals, gifts and visits... thank you so much to each and everyone of's an important part of his recovery.

The title of this entry reflects how our family and home is functioning.  Each and every day we have moments of victory and hope and excitement.  Each and every day we have tears, and frustration, and anger.

Shea and I are working through the hard tasks of learning how to do everything differently, learning how to cope, learning when to ask for help, learning when to say - I'm so sorry, but you have to try to do this on your own.

The once simple and quick task of putting on his own pants, today turned into sobbing tears, venting and anger when i told him he needed to practice this without my help today.  My heart broke into a million pieces when i heard " why did you make me have this surgery, I hate this, I should have never let you do this to me"  Wow... a kick in the gut to a mother who already feels guilt and responsibility...     This is not the whole day, he had many moments of smiles, and outdoor time, and laughter... but the realness of his struggles are here for a good long visit, and are not leaving town quickly.

I've been told by various doctors that we will know the final outcome, "when we know".  When we get to 1 year post op, it will be a good picture of what his actual recovery toward baseline will be.

I'm not really sure that Shea can process this yet.  As a mom, and a mom who works in healthcare... I am processing it all, far too often, and can't seem to get the anxiety of the situation to ever take a back seat in my mind.

I hope and pray that he will beat the odds and not only recover to his full baseline abilities...but that it will happen in a much shorter time frame.

We are not typically a family to mourn disability or struggle... but that may be because we opened our hearts to it in a planned way, knowing ahead of time much of what we were getting into.  This was an ambush, a surprise that we never expected.  It was taking a very functional little body and now having a son who wants so badly to get from one spot in the yard to another, and simply can not.  I watched shea lay on his belly in the grass today and pull with all his might with his little arms to "move" and explore... after 5 mintues of effort and discomfort he had shifted about 3 feet. I also see my son, who weeks ago was qualifying for national not be able to keep his balance in sitting without support.  I am very very proud of his progress so far, and i am also filled with sorrow and anger.  It's hard to have such opposite emotions in you all at the same time.

I try to let Shea see the brave mom face, and keep the struggle out of sight for him.  I wish we all knew what and when his final outcome would be...we have hope and we have fear also.

So, in general, when someone asks... "how's he doing, how's everything going?"  I struggle to answer. I want to keep positive and hopeful... but i also want to be real.

So ... for now we will say, every day is new, and it will be exciting to see what can happen today.

Prayer requests:
For Danielle - our dear girl is having a great deal of emotional turmoil.  She can't process what is happening when shea is in pain, struggling, doing new things.  Her melt downs are regular and intense...and it's hard on her and the family.  Our sweet girl turns 13 on tuesday... I pray for peace and an even keel for her this year.

For Simon - Simon is the quiet behind the scenes man.  He can occupy himself and sneak off to his solitary place too easily... as we have so much time and physical interaction focused on shea right now to get through day to day tasks... pray that we can manage to keep simon engaged and involved in fun and meaningful ways and that he doesn't get lost in the shuffle.

For Emily- Well...she's 3 and we all know it!  She knows right now that the world is not revolving around her, and can act up and challenge us at times.  She is a precious girl who has a strong personality.  We love her to bits, but pray that as tensions sometimes run high that we guide her and teach her in positive uplifting ways with patience and a gentle tone.

For Shea - a hope filled heart, a drive to do the things that are hard, and for his pain to subside so that he can focus on what he needs to in these next months.  Also for that right leg to start catching up to the left leg.

For Mom- That i prioritize properly for Shea... do i focus on trips to the pool, the nutricianalist, stretching, catching up on school work, pain control, weight bearing??? all needed parts of recovery,but there are only so many hours in the day.  I'm also back to work now... i need wisdom to make good choices for him, while also letting him be a kid, and have time for rest too.  I would ask for prayers for peace, for faith in a good outcome, and that i could beat anxiety and fear.  I also would love prayers for the physical stamina of my body, which is doing much more lifting, shifting, bending than i'm used to...i go to bed feeling like i've just left the gym.  Please also pray for my mom's health too....

For Dad- rest, refreshment, and endurance.  Encouragement, and good nights of sleep... and that he knows how much he is loved during this challenging time.

If you've made it this far... thank you so much for reading and caring... this entry may be a bit too honest, but it's real...and it's our heart.

thank you so much for your prayers and support for shea and the family...

Sunday, June 21, 2015

He's rounded a corner!

It's been a good day.  We are still working on pain control, and the legs are about the same as they were yesterday.... however a big breakthrough is that shea can now for the most part sit up without vertigo.  It happened like a switch.  We had been playing a ball game while he was in a kid cart laying on his side.  It involved a lot of arm movement for about 20 minutes.  He even tolerated laying on his back for a few mintues.  Suddenly Shea said - mom, my head feels different... i think i want to try to sit up....   AND WITH HELP HE DID..... NO VERTIGO!!!!

I am over the moon.  I feel like discharge could be within the next day or two now.  We do still have consistant vertigo when he sits up and then looks down, from neutral head into any cervical flexion... but it is so much improvement.   Answered prayers...!!

He is getting more comfortable in bed as well, and a few times over the last day and a half has taken tylenol instead of hycet.  Nights are still rough... and i hope that improves for him soon.  Waking up trapped in his brace and disoriented bc of sleepiness doesn't help much, and sometimes i think it's anxiety, or frustration as much as pain when he struggles at night.

It looks like he has a bit of a UTI growing... and he has a low grade fever tonight on tylenol... but that is something we're staying on top of and hopefully wouldn't prolong a hospital stay.

I'm hoping now that his pain with sitting up will lessen that the improvement in vertigo would make this possible.

Since there has been a significant improvement today with the vertigo for the first time since june 8th...I am feeling like we may not move forward with the csf imaging tomorrow.  It involves contrast being inserted through the shunt and watching flow in various positions, and also sedation of some level.  I don't know that i want to put him through this.... and now i wonder if we really had more of a dural / cord tension / stretch issue...that affected his chiari...rather then the chiari being affected by a low csf pressure issue.    Dr mom has a new specific diagnosis...that wouldn't require any serious intervention. (But i won't go into it in case i am totally wrong!)  Whatever the reason he is feeling much better and I am so thankful and blessed.

Do pray that shea's anxiety about sitting up without support will decrease.  Even though he doesn't get the vertigo today unless he looks down, he was still very traumatized / fearful about sitting up,. We also need his little neck to strengthen.  He's been in non gravity positions for so long that he looks a bit like a bobble head doll currently.

Tomorrow brings morning meds, and personal medical routines for a few hours in the am, then we'll see ortho, and probably neurosurg.... testing is up in the air...and we will watch this uti and pain control...

I would say there is a possibility that we could be sleeping in our own bed by monday night. I sure hope so.   Shea has a long journey of physical and spirit rehabiliation on his horizon..  We need to close the vertigo chapter, so that we can get on to a new phase of life, where shea learns to function and mobilize himself with a totally new funtional level of his ...


Saturday, June 20, 2015

June 20th ... another day in picu

Thankfully we were not moved to a double room on a floor unit, and now there are some empty rooms and 2 other kids who are more stable than it looks like we're safe for now and can keep the quiet big room w md's to access 24 hours....this makes mom happy.

Shea's plan: ENT will take him to the "balance lab" and perform a few more tests to absolutely rule out peripheral vertigo, they don't think he has Periph vertigo, but want to do some extra testing to be sure. Neurosurg and ortho are doing some type of radiology testing to look for csf leak.... however the first is an outpt clinic and not open until monday and the second is a test that is done by someone who works monday through friday, and is only called in if it's considered medically urgent... so we will finish out saturday and sunday in a holding pattern, continue to work on pain control, and hopefully on monday start in on some of these tests to get further answers. If the csf test is not the culprit i have also told them i would like them like them to consider comparing the compression of his chiari 2 in supine, vs sitting ( if there is a way to do this?) after i asked for this, a friend who ran shea's case past a neurosurgeon with a great reputation in the US also said he would first test for csf and then chiari hopefully we're on the right track... OR we could just pray that it would miraculously go away. Yeah - that, that would be good.

LEG UPDATE: The right leg has been the slacker. Today it finally started to show some change... we have gone from a quad flicker ( barely ) to a more visable small quad contraction and about 1/2 of the time we check him he is getting a very small knee jnt motion. (checks are every 4 hours )

Friday, June 19, 2015

shea - june19th

Quick update...

If it wasn't for the awful vertigo I would say we are within a day or two of discharge, when we could start our life of rehabing and adjusting to the new normal with the lost function of his legs, and the patiently waiting to see what would return...

Unfortunately the vertigo is still severe, and constant if ever above 45 degrees of sitting.  The MRI's did not show any obvious explanations so everyone pushed to still consider it an inner ear vertigo, and we even got permission to do the Epley manuever from ortho.... However ENT returned today also and spent a very long time with him... and strongly felt it was not at all consistant with peripheral inner ear vertigo.

So it may have a central cause and tomorrow we have to delve into that.  I tracked down the picu docs and they agree to my request to get a new neurosurgical md consult tomorrow to discuss csf leak or shunt drainage that is too rapid,

His pain is slowly improving, so that's a plus... only had to use one prn morphine in the last 24+ hours, the rest controlled by oral pain med.

Surgical drain came out today.

Legs are the same as i reported yesterday...

Was planning to sign off and finally go to bed when just writing this sentence after lots of googling and convincing... however the nurse just came in and let me know that picu is no officially full, and shea is most stable, so if any other kids come in tonight we will be bumped off the unit to floor i better start doing a little pre packing ...  Pray it doesn't happen please... not in the middle of the night at least...

Wednesday, June 17, 2015

Shea's progress ( June 18th )

Today's "good things to report"

- foley cath was removed
- although groggy shea enjoyed some visitors
- pain is still present, but he is doing well on a pca pump and oral pain meds...continuous morphine has been dc'ed.
-no longer in need of iv hydration, but does still have iv for meds
-in am he was allowed to have a liquid diet and by dinner regular food
-vitals have been stable
- he was no longer on strict bed rest, but was allowed to return to wearing brace and sitting up, raising head of bed, getting into wheelchair etc.

The dreaded vertigo - many had hoped that the vertigo was somehow linked to the compression in the lower spine and once that was corrected the vertigo would disappear.  Unfortunately immediately when we raise the head of the bed or try to sit him up his world spinning, sweats, anxious, nauseous.  If you remember, they agreed that they wouldn't send him home until he could tolerate sitting for a reasonable amount of time.  Today my mother advocate job was to press the team to not just be content with a diagnosis of inner ear peripheral vertigo...because they never had a clinician with expertise diagnose him with that.  He has a symptom of vertigo...that doesn't automatically mean he has inner ear issues causing the vertigo.  College friend Julie W from Buffalo came to visit and I was thrilled that she was there when it was time to convince the doctors of this next step.  Julie just took vertigo treatment classes, and her jargon and observations helped strengthen our case.  After last week saying it wasn't needed... today they agreed to pull in a neurologist consult and an ENT consult.  ( last week neurosurgery was consulted but they only cleared his structural soundness of his shunt )

Both consults happened in the afternoon.  Both disciplines had immediate concerns during their assessment that warented further testing.  Wed night shea had a head CT for neuro and a head CT with contrast for ENT who suspects a possible vascular componant to the vertigo.

( with the help of google and the keywords  vertigo / vascular and symptoms I have made a mommy self diagnosis.... and am waiting to see tomorrow if i was even close.)  A mother of an ill child has a love / hate relationship with google... bunny trail.

"Fun adventure of the day" - Shea's mean arterial pressure was to be maintained at 65 or greater for the first 24 hours after surgery.( for best cord perfusion) By 4am his body couldn't manage this anymore while he was sleeping...however when he was awake it was meeting the mark.  Our choice was to let him continue to sleep as he had been for most of the post op course so far - but that would mean inserting an arterial line again and giving pressor drugs to raise his pressures.  Our second choice would be to wake him up at 4 am and keep him up till 9 am ...  so we chose the latter... and boy oh boy was that ever fun...

His legs - The right leg range of motion is the same, but he's firing the muscle more automatically and with less strain and effort.  His left leg/ quad ranges from no activity, to quad flickers, to very small jnt movements produced by the quad...

One time today I did have to fight a battle again to make my voice heard.  A plan had been made in the am in regards to one of shea's managements, with rounding doctors and mom. In the afternoon I stepped away to bring equipment from the van to his room and in that time - 1)the plan had changed by a team member who had not seen shea that day,2) something he needed was removed, and 3) a new intervention started that was causing him distress, and pain.  It took expressing my frustration, in a quite vocal manner and going above a head or two... but we got back on track with our original plan.

New "toys" for shea's future- I've started the process of ordering a wheeled stander for shea from monroe wheel chair, so that once we have symptoms resolved he can have a way to be mobile and vertical.

That's about all for today... we'll see what tomorrow holds... answers for the vertigo i hope and pray...

Tuesday, June 16, 2015

and now we wait on the little legs... and possibly wait and wait and hope and hope

Shea, Tues 16th

Shea came out of surgery at about 4 am.  He had a very painful hour until the morphine finally caught up with his pain and anxiety... but now he's comfortable when sleeping.  He still has significant pain when he's awake...but for most of the day his body has been letting him sleep.

Structurally the decompression was a success.  It was a severe compression, and it has been present too long.  It is unsure which came first the chicken or the egg... but the cage shifted and also there was abnormal cartilage in the vertebral canal above the removed vertebrae that was now resting on the cord.  One of these issues could have caused the other issue when alignment shifted, or vice versa.

Today he is to be free of the brace, and on bed rest rotating from left to right every 2 hours, bed flat, and on ice chips.

THE PROGNOSIS:  what should we expect about return function of his legs?  We are told that because of the severity and time of the compression we have a long road in front of us.  We may get his baseline strength in a few weeks, months, or a year...or we may be looking at a more permanent type of loss.  This will now be monitored and treated as a spinal cord injury that needs to try to heal.

The good news is that we have seen a little improvement in his left quad, he can move the knee jnt and inch or so with lots of concentration and effort.  ( we had only a small quad "quiver" on the
left before decompression )  Also on the R quad we now see the quiver at times when really working hard at it... and before decompression there was nothing at all.

I feel much better now that Dr Sanders is back in town and will be paying close attention to each detail.  I also feel relieved that I took a stand and "dismissed" one staff member from our case who i feel was a key component of not having my concerns addressed and not taking our symptoms seriously, not pursuing diagnostics that i requested.

Shea may be allowed to put the brace on tomorrow and attempt to sit up.  For now his little body is medically stable.  Once we sit in the near future we will see if there is any resolution of the awful vertigo issues, to see if that was related in some way to csf imbalance from the compression.

The team and i have also come to an understanding that shea will stay admitted to some part of the hospital, if we feel he should, until he can tolerate upright sitting for a reasonable amount of time. This will make the transition home more safe and manageable. ( unlike our weekend at home that we just experienced.)

Today has been his quiet rest day, with lots of sleeping allowed.  His work has been his position changes and his breathing exercises.  Tomorrow will bring new goals and hopes.

PRAY FOR:  the cord to rest, heal, calm and return to allowing the nerve conduction to flow through it.

Monday, June 15, 2015

12:20 AM Shea is in emergency surgery.... june 16th

You'll notice there have been no posts since Wednesday.  So much has happened to update about, but so little energy to update with...

Thursday AM when checked over by Dr Sanders Shea's very weak legs were even weaker...but still moving... by Thursday night the movement was almost gone, and Friday through the present it remains absent. Dr Sanders had left town to teach at a conference in NYC.

Also we were battling with the vertigo and pain control... There were so many things to prioritize.

His shunt was checked and cleared.  We were discharged from the hospital Saturday with a medically stable boy who "just had vertigo" and side effects from a long hard 12 + hour spinal surgery.

While still in Strong on Friday, and Saturday i told anyone who would listen that Shea couldn't move his legs anymore... the residents told me " it's just a side effect of surgery, be patient it will eventually come back"  I asked for xrays, or nerve conduction tests, .... "it's not needed"give it time was always the answer.

I went home but never unpacked my suitcases, and even had a sitter go fill the van with gas.  I was unsettled and needed to feel prepared.

I also called on call ortho on Sunday when we were home because the vertigo had gotten worse. They said give it time.  Monday AM I spoke with the ortho office and by now Dr Sanders was home and by afternoon he called me back directly.

Finally after Dr Sanders heard my concerns, there was no question, we were headed to the emergency room. The staff knew all about our arrival and we were speedily progressed to xray, put on IV and nothing to eat or drink. Over the next 8 hours little man had also had, an MRI and a CT scan.  He was admitted to a 4th floor room and then down to pre surgical.

His spinal cord is infact compressed, and likely has been since thursday night.  As of 12:20 they have taken him into surgery. Dr Sanders with 2 neuro doctors are preparing now.  I am very confident in Dr Sanders ability and wisdom, please pray not for shea only, but for every choice and movement that the surgeons make.  I am not at all pleased with the decisions that were made by other staff last week leading up to our discharge.... but I am looking forward right now.

The hope is that after decompression and time that the movement of shea's legs will return.  God please restore my son to his active, mobile, fast, all boy self.  Restore his cord, his nerve function, his mobility.  Protect his body medically through this whole ordeal...

Once Shea is through this surgery, he could possibly have another that needs to be done later this week depending on if hardware has to be removed or added.  The hardware that shea would need if the current devices aren't adequate are not in the hospital now as they are ordered ahead of time for planned surgeries.  My hope is that this will not be needed.

Pray for his spirit, he was a wreck, and kept telling me, "mommy i love you, don't leave, I don't want anymore surgery"  Little man has had enough...   I will never ever stop being the mother who fights for my child until the issue is heard.

I will try my best to keep you updated....