Day Four - Good & Bad

Well, day four post op started out great!  We were moved out of the PICU the night before and into a regular room.....with a great view!  Daddy spent the night at the hospital with John and I was able to get a good night sleep at home.  

The night went smoothly and the day was progressing wonderfully.  We gave him a sponge bath, lathered him up with lotion, put clean PJ's on him and let him choose which new pair of socks he wanted to wear.......he choose one "Cars" sock and one "Dr. Seuss" sock.  He ordered a chocolate chip cookie for lunch......totally my kid:)  And every time he sat it down he said, "Momma don't eat any of my cookie!"

After lunch (and PT) he took a long two hour nap and awoke to some fun visitors......two of Mommy's good friends and his sweet little friend, Lily.  They brought cards and balloons.....and John was beyond thrilled to see them.  Lily and John told each other knock knock jokes for a good ten minutes.....and were cracking up the entire time.  It was WONDERFUL to see my boy laughing again.  They even performed their own version of, The Fresh Beat Band.  Lily sang and they both clapped along to the beat......and even took a bow at the end.

A wonderful afternoon it was!

And then......

The nightmare began.  Around 3:45pm he was given Lortab (Tylenol with Codeine) and exactly an hour later he was given Valium because he was still in pain (we have been doing this regimen for three days now without any problems.)  I am actually thinking  a lot of his pain/discomfort is constipation.  He hasn't had a bowel movement in over five days.  Anyhow, the nurse handed me the syringe with the Valium and I administered it via g-tube.  While pushing the medicine through his g-tube I thought to myself....this dose seems a lot more than the previous doses.  

We gave it a few minutes to take effect but he clearly was in a lot of pain.....so I climbed in bed with him and together we played his Leapster Explorer.....trying to get his mind off the pain.  After about ten minutes I noticed he was sweating profusely.....and then the alarms began to sound.  His heart rate drop to 48 and his face was turning blue.  I screamed for the nurses to come help me.

I repeatedly shouted, "Do something!"  I mentioned that the Valium dose that the nurse gave me looked more than the previous doses and in seconds the Dr came in, started an IV (took two tries) and gave him a full dose of Narc-an....an extremely strong drug used to reverse what was given to him (with HORRIBLE side effects.)  Per a close family member of ours (who is an RN) they definitely overdosed him because there is NO WAY they would have given him Narc-an if they didn't.....it is a drug they give heroin addicts when they overdose.

So, as mentioned, the side effects of Narc-an are terrifying.  He was trashing around uncontrollably...tore his IV right out of his arm...arching his back, flailing his arms and legs, twisting in all directions.....and all of this days after major surgery on his spine (with strict instructions to lay flat with no twisting of the upper torso.)  This went on for fifteen LONG minutes....before they gave a hefty dose of Morphine straight into his arm muscle:(

In the mist of all of this I called Jamie panicking.....not sure he even understood what I was saying but he knew it was serious and was out the door in minutes.    Thankfully our parents are close by..... and my awesome next door neighbor ran over to get Hope until our Moms could get there.  I cannot even imagine the flood of emotions Jamie was feeling as he was flying down the freeway trying to get here.....brought him right back to the horrible NICU days I'm sure.

We then were transferred back to the PICU and that's where we remain today.

In all honesty we have been very pleased with every part of this hospital.  It is kid friendly, family centered and the best cafeteria around:)  We've been treated with the up most respect from everyone.....not to mention, our Neurosurgeon is the BEST (bed side manner and all.)  It's unfortunate that a potentially deadly mistake was made by one person....but we do not fault the hospital at all.

I cannot even put into words how scary this all has been but it's over and thankfully he is okay.....AND we are headed home TOMORROW.

Oh and in all the chaos of moving us back to the PICU, we lost our camera.....that had the video of John and Lily dancing on it:(

Day Three

Day three post op has been good.  He is feeling more and more like himself every day.  The incision on his spine is still pretty  tender (and will be for about a month) but his legs seem to be feeling MUCH better....he doesn't mind you touching them which I'm assuming means the tingling sensation is gone.

And every time you ask him how he's doing he replies, "Good!"  No matter how uncomfortable he is.

He's my hero and gives me more strength than I ever knew possible.  

PT came in this afternoon....got his AFO's and shoes on, got him up on his feet and tried helping him walk.  It was very hard to watch.....his legs are completely jello.  He cannot hold himself up at all.   But he was happy as could be and didn't complain once (even though I could tell by his facial expressions that he was uncomfortable.)  

During his brief PT session he kept trying to get his games off the table he was standing at so I told him as soon as he was done working with Kelsy (the PT)  and she had left, he could play his games.  About two minutes later he looks at her and says, "Can you leave now please?"

We've got an intense six months of therapy ahead of us but this little determined boy will be proving those doctors wrong again in no time!!!!

Keeping himself entertained with new books on the iPad.

Thanks Aunt Sharon for the gift card!

And new books on the iPhone.

Spoiled?  No!  He deserves all of this and more!

He told the nurse last night that he needed to check his heart too.  John then proceeds to tell him, "Now take deep breaths like this".....and then demonstrates how to do it.

Love, love, love him!

Poor guy was still having a tough time keeping his O2 saturations up last night. 

He's been much better today though and hasn't needed any oxygen at all......not even during his nap.

Sissy soooooooooo excited to see her brother.  She misses him so incredibly much.

Checking everything out.

A little jealous I think that brother has a big flat screen in his room......and gets to watch cartoons in bed!

Ahhhhh!  Clean sheets and his own PJ's.  Much better!

Day Two

Today (Day two post op) was a very good day for John.  As mentioned, he slept wonderfully last night.....and took two long naps today.  He ate a little and even sat on the side of his bed with PT.  We are still in the PICU for at least one more night.  They stopped morphine and are giving him Tylenol with codeine for pain (he only needed it once today) and valium to relax his leg muscles.  

The Dr. described the feeling in his legs similar to when you hit your elbow on something and get a tingly feeling.  He said the tingly feeling should subside by tomorrow.....yippee!

We are taking it one day at a time and counting our blessings along the way.  Again, thank you all for your continuous prayers.....we know He listens.

 He was super excited to see Papa....and Grams and Grammy again.

And I even got a big smile out of him.....must have been the vanilla ice cream he had just eaten for dinner:)

Little Ms. Hopie is doing wonderful too.....minus the face plant she took this evening outside of the Hospital:(  And my lucky little lady gets to spend the afternoon tomorrow with Daddy, Grams and Papa at the new stadium for the D-backs first spring training game.  A special afternoon just for her......and you should see the adorable D-backs cheer outfit Daddy bought her!  

Night Two...

....was so much better!!!!!  Ahhhhhhhhh!

He finally fell asleep last night around 5:00pm.....slept solid (snoring and all) until midnight, was up for a few hours (talking about his new Leapster Game Daddy bought him.....and all the other ones he wants.)  It took him awhile to get comfortable again (and he was extremely itchy from the Morphine) but finally the Benadryl took effect and he was sawing logs (Mommy too) until 5:00am.  The nurse changed his pants at that time.....then the two of us fell back asleep until 8:00am this morning.  

I just ordered him 2 pieces of bacon and a blueberry muffin....per his request.  I know some food in his tummy will help him feel better too (all he had yesterday was two orange popsicles.)

The Neurosurgeon also just stopped in.....said PT will come in and get him up sometime today.  Obviously they'll be taking it very slow.  They are also hoping to move him out of the PICU later today and onto a regular floor.....which brings a lot less probing and prodding and  a lot more sleeping (hopefully!)

Hopie was soooooooooooooo excited to see her big brother yesterday.....she came running in the room squealing away.  She would have jumped right up on top of him if we let her.  

Grams was just as excited.....but she was able to control her squealing:)

This was taken around midnight.....he was trying to get comfortable.  Funny thing is, this is exactly how he sleeps at home.  

The nurse walked in and said, "Hmmmmmmm, this can't be good for his O2."  Ha Ha!  His saturation's were still low so she just stuck the oxygen mask under his pillow and all was good again.

And here are my favorite boys this morning....watching some morning cartoons.

No Fun (UPDATED)

We are so grateful that the surgery went smoothly.....unfortunately we cannot say the same for the recovery.  These past 24 hours have been miserable.  They have given him numerous pain meds but nothing is doing the trick.....and he has not slept for more than 30 minutes at a time since he came out of surgery yesterday at 2:30pm.  And on top of all this, he is now requiring oxygen because his saturation's are low (due to the pain meds.)

Please pray that the doctors and nurses can find something that will ease his pain and let him rest peacefully.

This is so hard but I know it will be worth it....I can already tell the difference in his legs.

PM UPDATE:

My little man is finally resting comfortably.  In fact he has been sound asleep for the past two hours.....snoring away next to me.

Anxious to see what each day brings!

Surgery Day

Today was the big day!

We woke the big guy well before his usual time (but he was all smiles...and still very excited that Grams had spent the night)  and headed to the hospital.  Once there we watched Polar Express on the iPad (per his request....he is definitely my son), played with tons of fun toys that the Child Life Specialist brought us, attempted an MRI without sedation (which was unsuccessful but he did give it a try....too noisy though), played with the Child Life Specialist some more while waiting for the anaesthesiologist and then said our tearful goodbyes as he drifted off to sleep.

I must admit these were the longest 4 hours of my life.  But it was all worth it when our AMAZING Neurosurgeon met us in the waiting room and said the surgery went perfectly.  

He ended up severing 55% of his nerves....said he didn't want to over do it, just fine tune him!

While Grams took GREAT care of my precious baby girl at home, Grammie came down to deliver us Pita Jungle for dinner and give some love to John.

We once again have been overwhelmed by the outpouring love and support we have received from family, friends and acquaintances.   I am truly humbled to know each and every one of you.

As mentioned earlier, we have a very long rode ahead of us but he's our fighter and doesn't let anything get in his way!  Giving up has NEVER be an option!

Lets Do This

This is probably the eighth or ninth time I have tried writing this post.  I think it's because I'm having a hard time expressing the flood of emotions (nervous, scared, anxious, excited) I am feeling the night before my baby boy goes in for a five hour surgery.

As mentioned in previous posts, we have been researching a surgery for John that has the potential of being life changing.  After two years of research and selecting a top neurosurgeon (that we have 110% confidence in) we have made the decision to move forward.

John will undergo a Selective Dorsal Rhizotomy (SDR) tomorrow morning at 8:30am.  This surgery requires the opening of his spinal column.  The neurosurgeon along with his PT will manually test each nerve root severing the ones that are clogged.  It will immediately and permanently release all of his spasticity in his legs due to cerebral palsy.  Therefore, improving such motor functions as, walking, standing and even speech.  

As we journey into the days and months ahead, please keep John in your prayers.  We have a long road ahead of us but giving up has never been an option.

And none of this would be possible without the help of our family and friends.  Thanks to my amazing mom and wonderful mother-n-law (and Dad, brother and sweet little niece, Paige and friends) who will be taking great care of my little Hopie (and spoiling her rotten I'm sure) while we are at the hospital helping John recover.

This picture was taken tonight.  John said to Grams, "This is the best sleepover ever!  I'm going to give you 100 kisses."

Fan Fest

I love my boys!!!!!!!

Last Saturday they spent the day down at the ball park.....and had tons of fun!

My Little Drummers

John's music teacher ROCKS!!!!!!!!!  Not only is she incredibly talented, patient, loving, fun (the list goes on and on) but she also scored him a drum set...for free!!!!!!

We love you Ms. Amanda!

18 Months!

My pretty little princess is just perfect...50th percentile for both height and weight.

She weighs 25 pounds even and is 32.5 inches tall.

A Little Weekend Treat

It's not too often that we have chocolate donuts in our house.....because Mommy has no will power for chocolate and would eat the entire box:)  So it was a nice surprise when Daddy brought them home.

I must say we (mainly John) earned them though.  Friday night was rough...Johnboy took a big fall off the bar stool directly onto his head.  I almost called 911 (I never mess around with head injures) but thankfully my mom was minutes away and was able to take Hope while I rushed him to the Dr.  Fortunately he was okay...minus a huge black and blue goose egg on his forehead. But we were instructed to wake him every few hours throughout the night.

Needless to say we were a little sleepy Saturday morning....and I was more than thrilled that I didn't have to make breakfast:)

Clean Babies!

Ahhhhhhhhhhhh, these two (plus their Daddy) make my heart smile!  I'm a lucky girl.