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....  

post op day 3

Progress of the day:

This am the fever finally broke... it's back now, at 100.1 (tylenol on board) with a strange rash that we are monitoring, it's itchy, so we're wondering if it's a reaction to the pain medication?

IV hydration has been dc'ed.  He's eating a bit better today and drinking enough.

morphine pca has been dc'ed, he's on oral narcotic pain med w tylenol every 4 hours now...so this is an improvement.

With creative measures we were successful in the poo department... let's just leave it at that!

Shea's brace was adjusted, and although he still hates it, it fits much better.  He was able to sit up in the chair for 1 1/2 hour each time.

It looks like there is a good chance that shea won't tolerate his own wheelchair for a while, ( too upright, not enough support ), so we will rent a recline back  wc with more support for the first month.  ( same type he had after his hip surgery )

Please pray:  Each time we sit him up more than 45 degrees he becomes very dizzy ( room spins, sweats, nauseous )  It seems like an inner ear reaction.  It takes a good 15 minutes for this to settle from severe to tolerable.  Also the first 10 minutes or so of sitting up his thighs have severe pain. Little man needs all of this to settle down so that he can make progress with his mobility and function.

also pray for his spirit... the pain and the vertigo like symptoms and the brace are wearing him down. Seeing him struggle so much is very hard for this mom too.

I hope tomorrow we will start to see some improvement in his ability to move his legs, they are very weak... that would be a very uplifting.... he is very frustrated that he can't get his hips and knees to "listen too him" like they used to.

The visits, cards, gifts and prayers to shea have been so appreciated and a nice needed distraction for him ( and us!)

until tomorrow...

A (miserable) day full of improvements!

Although Shea had a pretty rotten day, it was in fact full of good progress.  We are still on the PICU as I write this wednesday night.

Shea's pain is still quite significant at times, but we are learning how to manage it better and use some strategies to help him relax a little.  He is finding times where he's feeling well enough to watch part of a movie, or talk a bit, or play a for a few minutes quietly.  ( I think today was a "four 1/2 smile rating" )

He is having trouble sitting up straight because the room "spins and spins and spins".  He tolerates 45 degrees ok... but vertical is pretty awful for him right now, causing him to cry and become very anxious.  I'm thinking maybe inner ear from the 12 hours face down and then another day and a half of bed rest... hoping that will start to clear up tomorrow.

The cause of the breathing problems ( and maybe the fever ) was confirmed to be atelectasis. ( small scattered patches of collapsed lung tissue )  It is one of the most common side effects of long surgeries.  He had just been under for too long and required too much IV fluid to keep his blood pressure up... It sort of flooded his system.

This has shown improvement today, they decreased his iv hydration that he's still having, and because the back brace came today he was able to spend some portions of the day at 45 degree angles, or upright with support.

His sats are doing pretty well without oxygen today if we keep him relaxed.  

The good news about the brace is that it's here, so we can not be on such strict bedrest and this is helping his medical status start to progress.  The bad news is that after using it for a day we're realizing there are quite a few size and fit tweaks that need to be made so that it's not causing pain in his ribs and pressure points that make it hard for him to take deep breaths and stay comfortable. Hopefully orthotics will be here in the first half of the day tomorrow to help make these changes in the lab.  We are cheating a bit and letting him just use the back half of the brace and monitoring his movements closely.

The fever.... is still there, but low grade on tylenol... so prayers that by tomorrow that takes a hike as well.

Foley is out...so we're back to intermittent straight cathing.  Drain tube is out as well!  We are also down to one IV instead of  2.

We've started the transition to decrease morphine, and oral pain meds have been started.  He was also upgraded off of liquid diet.

Lastly, he still has motion in his hips and knees which was a huge prayer, however they are very very weak.  I'm not too worried about this now - i'm sure it's a combination of the bedrest, the pain, surgical inflammation around the cord,  etc etc... but sure would love prayers that it is a temporary surgical side effect and atrophy, and that his nerve roots and lower cord are intact.

That about all for now, our goals for tomorrow involve getting the brace adjusted so he can tolerate more movement, working on the dizziness when upright, trying to get off the morphine, and getting off of IV fluids, and !poo!...  all 5 would be super duper.... but you know... gotta be flexible.

Many thanks for all the notes of encouragement and prayers.

PS I spoke with danielle on the phone today because i'm missing her.  She was happy as a clam at respite and really couldn't spare me too much time because she was too busy being social with her friends! 

Post Op Day One for Shea (aka Rocky)

Reporting in for our little man.  He is quite miserable today.  I think i saw three half smiles today.
For the first half of the day things were going along decently.  The arterial line was removed. Unfortunately no back brace yet...so no sitting up allowed.  They say it will be completed by tomorrow morning.  I'm looking forward to that when i wont be as nervous each time I help him change positions ( back, left, right repeat!)

Thank you to some special visitors from rookies and team grandpas / grandmas.  Also an early visit from Rose so mommy could do a fast coffee and toothbrush run to the first floor!  Shea was pretty out of it when some of you visited, but i know he loved seeing you, and that it provided him a bit of distraction from his distress.

About noon I noticed he was getting more uncomfortable ( possibly the anasthesia wearing off).... then his breathing would get rapid,  his 02 sats would drop and it was turning into a hard cycle to break.  We are keeping up with the pain meds, and at times it seemed like the anxiety and breathing was more of a problem than the pain.. We tried adding some valium to calm him and relax his breathing but didn't seem to do much, so then added oxygen and he went quickly from the 80's to mid 90's and he seemed much more relaxed after this..

I breathed a sigh of relief, and then noticed shivering...the tell tale sign, and bam - fever of 103.4. with tylenol on board.  We do have it down to 99.5 now.  It could be a typical post surgical "my body has been through the wringer" fever.  We are however doing a urinalysis, and keeping a close eye on his lungs and incision.   Depending on the course of his first tests, and how his fever trends will help us decide what action to take later today and tomorrow.  Whatever the case, really hoping to get sitting and moving a bit more tomorrow.

That is about all for now.  Hopeful for a quiet night.  Happy to get a few minutes of lovin' in with emily today.  Missing my Simon and Danielle... As always thank you for checking in and for all the prayers...

A long 12 hours for little man

Shea reported in for surgery at 6 am monday.  He was very nervous and anxious about the whole ordeal, but knowing that presents would be in the near future helped him find a silver lining.

They did let me go back to the OR with him until he went off to sleep at 7:40.  An initial stall occurred as he spent the first two and a half hours under anesthesia while the team combated problems with inserting, iv's, arterial lines etc.

The incision was made at 10:06.  Dr Sanders worked meticulously on shea until 8 pm monday night. Little Man was in surgery for just over 12 hours, with about 10 of that being the spinal ortho work.

A few reasons the surgery doubled in time from initial estimates:
-  Dr Sanders discovered the deformed portions of vertebrae he needed to remove were more cartilage like than bone like, and removing it was more risky and time consuming.
-  When an ideal full alignment correction was made Shea's spinal cord would lose electric signal to his lower body (likely because his cord has never been completely straight and doing so caused too much stretch or tension on the nerve fibers)  It was decided that some amount of curvature would be left to keep the spinal cord functioning well.  Dr S reports he is still very happy with the new position of the spine, and the integrity of the fusion

Shea was in recovery until 1130 pm, and then transferred to the PICU.  His pain is under pretty good control, and for the most part his vitals are quite stable.  His neuro checks are still good.

It looks like there is a chance his back brace won't be ready until tomorrow because of how very late it was last night after surgery when he could finally be measured for it.  Fingers crossed... if it did come today he could start to sit up and be visited by PT,... and that would help get bowels and internal "stuff" ( vague highly technical term) moving better and help with pressure relief/skin integrity, but for now we are still allowed to re position him from left to right side lying every 2 hours.

For today, he will be allowed to start liquids, juice etc, and hopefully the arterial line can be removed. Everything else will likely stay put for now.

Thank you a million times over for all the cover we have had in prayer.   I am so pleased with how well he's doing so far.

Confounding the Wise...

A quick update from the homefront.  We're all very proud of daddy / hubby who has finally finally finished and published his book!  It's a bit, no a lot strange to see a book floating around that has photos of my family in it and strands of our journey and the story of family, adoption, special needs and surviving / thriving at this life woven through it.  I tend to like a computer screen between myself and the stories i tell.... so this was all a bit akward and different for this mom who likes to stay under the radar so to speak. At the same time it is exciting to have something to chronicle our crazy life to hold onto tangibly.  Also, there is hope that it will fall into the hands of people who need humor, encouragement or a seed planted to take the next step...

At the very least it warms my heart to see Danielle carry it around the house every day, and proudly point out her picture on the cover. Thank you to everyone who came out to the Pieters Life Center last week... it was a night to remember.

Tonight I'm lacking a lengthy blog, or any comical stories...but would covet any coverage in prayer as the adventure of life has proven to be ... well... very adventerous these last few months :)

We would love prayers for
- our house to remain illness free as we prepare shea physically and mentally for his spinal surgery coming up in early june, and the healing and rehabilitation that will follow
- for the health of near and dear family members fighting the fight
-for wisdom, encouragement and passion for dan as he pastors the church
-for patience and appreciation of each moment as parents to our kiddos
-protection for shea and i as we travel with his team to NJ for regional competitions...the last hoorah the 3 days before surgery before he dons his spiffy new back brace for 3 months
-dan's mom as she prepares to put her house on the market.
-for each of our children to grow strong in physical and mental health, in faith and in character

As always we appreciate your helps, concern and prayers... until next time.... - The "Kulprits"

thanks to the folks who have asked how to purchase a copy, it is currently on amazon and barnes and nobles for online sale.  Or contact us directly if local .... 

Helping the woman who saved simon's life...literally.

As Simon's parents we did not "save simon's life", or even "rescue" him as many people often say.

No, God put another person in that role.  A villager found him in the snowy woods and brought him to the police station.  That was the first time our son's life was saved.

Later, simon was sent to the wellfare institute ... not to live, but literally to die.  Simon had no opening for his waste to leave his body.  Normally this would surgically be corrected immediately to save a newborns life.  Not the case for simon... he was sent to the wellfare institute to struggle for a few days and then cease to take breaths.

The woman who was used by God to save MY SON's life is named Joyce Hill.

She is a British doctor, who discovered my simon and his deformity.  Without getting permission, processing paperwork or weighing the risk she took simon from the wellfare institute and with only hours to spare arranged for the surgery that would save his life.

I did not resuce him.... she did.  She literally saved simon's life....

Joyce and her husband Robin have saved countless children.  With a heavy heart i read as they sent our an urgent plea today.  Here is some of it....

I am going to help... but my help will not make a dent.  I need your help also.  If you could honor simon by helping the Hill's we would be very very grateful.  I would also like to ask you to help me spread the word.  I can reach a few hundred... could each of you reach another group as well?

I think of my son and what his fate would have been without this ministry.... I shudder.  Please read and take action.

Click here to see Robin and Joyce Hill's ministry  please go to this link to help...

Dear friends and supporters
 
Over the last few months there has been a big fall in support for the Beijing Center of New Hope Foundation and we have found ourselves in a position that means we have to reduce costs dramatically.
 
This means we have had to relocate 14 of our babies to other of our care centres in Henan. These centres are fully supported by our partners Show Hope so the baby’s long term care is assured, also 4 babies close to adoption back to their CWI.
This allows us to let 30 nannies go this month, we will need to reduce further if more funding does not come in for Beijing Center.
 
The situation today is that we need US$200,000 to pay outstanding bills and this month’s staff salaries Going on to the future we need to see at least 3 months running cost ($150,000) in our account to remain viable.  So totally we needUS$350,000 as soon as possible.
 
 This has been a very difficult decision to make but we are putting the wellbeing of the babies currently in our care, as our top priority. No babies who still need medical or surgical care will be returned to their orphanages. Many will be relocated to our centers in Henan which are located within the orphanages but they will still be in our care. We are hoping that many will be adopted as soon as possible but this is not within our control.
We began this work 15 years ago when we felt called by God to do so. We have trusted Him in everything that we have done and we continue to trust Him at this difficult time. We need to exercise wisdom as we carry on with this work and this is what we have to do now. We see the future as a smaller but financially stable Beijing Center, as this is where we are recognized and registered by the Chinese government. For all our other centers to continue to function, we need to keep our Beijing center open.
We have deeply appreciate all the support and friendship that we have received from you. Perhaps, over the years, we have taken on too much in our desire to help as many babies as possible.
 
Looking forward to seeing what is the next step for New Hope Foundation.
 
Robin & Joyce Hill
Founders New Hope Foundation.