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.