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....