Healing days

We are home and healing more and more every day!  The beginning of our recovery looked similar to the days in the hospital . . . more movies in the wagon! We battled through 5 more days of steroids and then waited for them to completely leave his body.   The steroids not only affected his mood, but also made him a nonstopping eating and drinking machine.  He has proclaimed loudly and frequently throughout his days, "I need food!" You can see from his bath picture below that he has put on a few pounds during the recovery process. 

One week after we came home from the hospital, we ventured back down to Children's for a post-op appointment with Dr. Mangano.  Coop had a great time in the waiting room playing mini golf as he waited to be seen.  We survived the suture removal, but almost had to reschedule for next week with sedation because this Headstrong boy even intimidates the director of neurosurgery!  After some convincing (of Dr. Mangano), Matt and I assured him we could hold Cooper tightly enough for him to remove the sutures. It took a little while and we were all sweating by the end, but we did it!  The top of the incision looks amazing!  In fact, our little boy was healing so quickly that the skin was growing over the sutures which made removal a little trickier.  The bottom of the incision had not yet sealed so the doctor decided another week of paper stiches was necessary.  These steri strips are not to get wet so we've been getting creative with bath time.  They will roll up and off in the next few days and we are anxious to see how he has healed.  We have stayed closed up in our house as he heals and washed hands often, but somehow the germs of the season still made their way into our house.  Connor has strep throat and Cooper has a cough and cold.  At first I got nervous and panicked, but then I realized a cold is just a cold . . . even after brain surgery!   The best news about the cough is that he has not complained of head pain!  Not once!  Prior to surgery a coughing fit would bring him to his knees in pain.  Today, plenty of coughing and not a single complaint of pain.  Praises!!

In the last three days, Cooper is slowly returning to his old self.  He wants to be up more then down.  He's acting silly, impatient, sweet and angry all within a 30 minute time frame. Sounds crazy, but that's more like the Cooper we are used to!  He has taken us on a roller coaster ride since before he was born.  We now understand that we actually have very little control and it is best to openly embrace and learn from the intense highs and lows that come with parenting Coop.
We are continuing to work through the emotional and physical aftermath of 2 weeks in the hospital and return to a new kind of normal.  We are a changed family . . . perspective will do that to you.  We are overwhelmed and grateful for the outpouring of love and support that has been shown by all of you.  The prayers, meals, texts, emails, cards, gifts and LOVE that has lifted us up will never be forgotten.  We are blessed.

"Be on your guard, stand firm in the faith; be courageous; be strong.  Do everything in love."
1 Corinthians 16: 13-14

Day 9: Eternally Thankful

Well...the day has come! The stay at "Cincinnati" has been great, but Cooper is blowing this joint!! YEAH! Thanks to all of the wonderful staff that took care of our special Cooper and a huge thanks to Dr. Mangano for "fixing his head"...but the Miranda's are out! And guess who is anxiously awaiting to celebrate this special day with their favorite little brother?

"Give thanks to the Lord- for He is good; His love endures forever!" Psalm 107:1

More pictures and words of thanksgiving coming soon!

Day 8: Stay Tuned...

We can't say that the entire day is filled with normal Cooper behavior, but the complaints of head pain are less, the pukies haven't returned, and a smiley face peeks out every once in a while! We see the occasional "booty shaka," then a little "roid rage" mood swing, then a perky "Bye bye, Doctor Lady." The HeadStrong Cooper that we all know and love is staring to shine through and the Miranda's couldn't be happier! All the kids got a visit today and Cooper showed off the playroom on the 6th floor! He still is obsessed with the wagon, has a case of the steroid munches and continues to ask about "mine house now?" Early rounds will determine whether or not tomorrow is "coming home day," - we are being optimistic. So stay tuned.....

Day 7: Turning Point

Many have prayed for a turning point...and today that turning point is here!  It may not have been the direct path we were hoping for...but all that matters is that Coop has arrived here now!  The PICU team has been phenomenal since we have been here; attentive, caring, knowledgeable, thoughtful.  This is definitely where Coop needed to heal.  God must have had a specific plan for Cooper's recovery...he obviously wanted Cooper surrounded by such special people.  And they knew he was coming!  Cooper's favorite neighborhood friend...Tricia...called ahead and prepared a place for him in each of their hearts!  And one certain individual has taken a special liking to our HeadStrong boy...and Coop has taken an even bigger liking to Chris!  Chris has been his nurse for 2-12 hour shifts now and after a few bruises and stains on his scrubs from a thrashing Coop during medicine time...Chris has labeled Cooper - "The Man."  He says he will always remember Cooper...as most of you already know that isn't too surprising since Coop is hard to forget!  He says that Coop has eaten more Popsicles than any other kid in the PICU...maybe ever, but we are trying to back away from the pure Popsicle diet.  There wasn't much food on the menu today, but milk made its way back into Cooper's life - and he's loving it. 

Cooper and Chris

Cooper refuses to brush his teeth or wear pants, and still has moments of "roid rage," but all are wonderful and welcome signs that our HeadStrong boy is coming back to us!  Dr. Mangano came to see Cooper today and is encouraged by the progress.  The steroid dose has been decreased and the plan is to slowly wean Cooper off the "sleepy meds," get him out of the PICU tomorrow morning and hopefully home for Thanksgiving day!  Coop keeps saying "we go to mine house, Mommy"...and hopefully in just a few short days - he can.  Can you imagine anything else to be more thankful for? 


Mommy and her sweet boy


We had a day of transitioning off I.V.s and to all oral meds, (YEAH!) and slowly weaning him off all of the sleepy meds.  The oral medications still take a bit of convincing, but it's getting easier and the "pukies" haven't made an appearance in more than 24 hours!  Despite many changes, it was calm (other than a few minutes of rage) but we are starting to see a pattern of when to expect it and prepare ourselves for it.  In between a few moments of rage, we have seen glimpses of our sweet Cooper-asking for his brothers and sister, proclaiming his love for Mommy and Daddy, allowing people to touch him and even opening his mouth to take the yucky medicine (sometimes).   

Dr. Mangano is definitely pleased with how things are going, but there is still the concern of recuperating too quickly and making a trip back to the PICU.  He was very clear in his instructions that Coop lay extremely low for the next 2 weeks, reduce risk for infection (sorry...meaning limiting visitors).  The idea of not physically hugging each and every one of you for 2 more weeks makes the Miranda's sad, but healing will come and the kids are planning the biggest party you have ever seen once Cooper has regained all his strength.  Get your party snacks ready...the countdown is on!

"Yet I am confident I will see the Lord's goodness while I am here in the land of the living.  Wait patiently for the Lord.  Be brave and courageous.  Yes, wait patiently for the Lord." Psalm 27:13-14

Day 6: "Roid Rage"

A rough night seemed to send Cooper back to square 1; but maybe starting over isn't so bad.  After the MRI, Cooper returnd to the PICU for stronger medication and monitoring.  It took more than 45 minutes to attempt and sedate him in order to make him more comfortable; the staff is still confused about Coop's tolerance to all the meds.   The normal dose of "sleepy stuff" doesnt seem to make Cooper all that sleepy.  But after some patience and some magic Mommy snuggles, Cooper settled in his new room for a little snooze.  Then, yet another I.V. bit the dust, and 5 more attempts were made at a new one without success.  The special I.V. team was able to get lucky # 6 to finally work around 4am.

Some peaceful sleep from 4-7am welcomed a new day of dozing, "roid rage," Popsicles, more dozing, "roid rage," Popsicles and repeat!  The MRI revealed increased swelling of his right brain tonsil; we aren't sure what the cause of the extra swelling is, but Dr. Mangano seems to think a few nights in the PICU, large doses of steroids and some more rest will do the trick.  The steroids are sending Cooper into spurts of "heightened agitation," causing more pressure and threatening the stability of his surgery.  We knew Coop was HeadStrong, but this kid on large doses of steroids=a whole new level of feisty!  So, a steady drip of Precedex is necessary to sedate him just a bit to lessen the outbursts and keep him more comfortable.  Come on Prayer Warriors, "roid rage" isnt exactly the most fun activity with a 2 year old- Mommy and Daddy need the prayers now!

This new day, has proved a little rough to handle, but Cooper has transitioned to 2 oral medications instead of I.V., (and keeping them down), he's holding down some more chicken noodle soup, and has rekindled his love for the wagon!  So, even though it seems Coop is starting all over again, maybe a fresh start will bring this boy home for Thanksgiving!

So, please God, help us to see the little blessings in the moments of "roid rage," please keep the kitchen in high stock of chicken noodle soup, and please Lord, DON'T LET ANYONE TAKE HIS WAGON!

"The Lord is my strength and my shield; my heart trusts in him and he helps me.  My heart leaps for joy, and with my song I praise him."  Psalm 28:7

Day 5: Sending Out the "Bat Signal"

Ok everybody, we are sending out the "Bat Signal" and asking our Prayer Warriors to suit up...we need you once again!  Cooper is battling more head pain today; he's upset, crying and getting so worked up he can't keep down any food or drink.  Dr. Mangano and the rest of Coopr's team have decided it's time to take further action: a MRI was ordered, a big dose of steroid was given and plans were made to transfer back to PICU for stronger pain medicine.  Dr. Mangano thinks Cooper is struggling due to aseptic meningitis, not the scary meningitis everyone is thinking of, but just more swelling and inflammation around his surgical area-which may be the reason he is experiencing so much pain and nausea 5 days after surgery.  Something needs to change, and we are hoping this new change in course is the missing link to get our HeadStrong on his road and home soon.

So, Prayer Warriors unite, (just like the SuperHeros Cooper watches on TV), we are shining the "Bat Signal" brightly into the sky, asking for the power of prayer to give Coop and his parents the turning point they so desperately need!  Pray for clarity, pray for decreased pain and swelling, pray for strength for they need for their second wind, and pray for God's all powerful healing touch.

"Trust in the Lord with all your heart; and lean not upon your own understanding.  In all your ways acknowledge him, and he shall direct your path."  Proverbs 3:5-6

Day 4: Slow and Steady

We knew the road to recovery would be up and down and today seems to be sending us back up the hill.  The new i.v. that took 5 people to hold him down...just yesterday...blew out today!  Which meant they had to switch to the left arm...definitely not fun the second time around!  After yet, another traumatic episode, Coop conked out for a little rest to gear up for the remainder of a busy day. 

Today, he as tried crushed up pain medicine...instead of all of the i.v. medications he has been getting.  Earlier in this journey, the oral pain medicine never stayed down because of the persistent nausea...but today...so far, so good.  Let's pray we can transition slowly to oral meds...our Cooper can't come home until off all of the i.v. medications and tolerating the oral ones!  The first step to tolerating oral medications is keeping down food!  With scheduled nausea medication, Cooper has had his first day of eating a little food; a plain pancake for breakfast, crackers, a few bite hot dog with shredded cheese (Do you think he's a Cincinnati kid...anyone thinking Skyline?) and chicken noodle soup.  Hooray, this is a HUGE step!  We still have a few steps to go...but ist seems His grace came today!  Thank you, thank you, thank you!

Cooper has grown totally attached to the wagon...it's the only place he will sleep...and asks,ok, demands to "walk for 40 minutes" over and over...(what does HeadStrong mean again)? However HeadStrong this boy may be, it's a breathe of fresh air to hear Cooper ask for things and start to show a bit of his persistent personality.  He's constantly asking to take a wagon ride, raises his hand when he hears the word "food," and is asking to see his siblings! 

Cooper (and Mommy & Daddy too) have been missing the other kids like crazy and FaceTime is just not good enough!  Connor, Megan and Cole got to visit the hospital today...and Cooper had presents waiting for them!  Thanks to a great friend, Cooper got to pick a stuffed  animal for himself , a brave lion, and then picked one to give to each of his siblings!  Connor got a green frog, Megan got a blue hippo, and Cole got a brown dog!  What an amazing idea to help the rest of the Miranda crew adapt to this new schedule and feel extra special today!

The day was filled with gifts and gift giving.  A nurse on the neurosurgery unit delivered this blanket today...her sister makes these AMAZING super soft animal blankets.  For every blanket she sells, she makes an extra and donates it to a patient at Children's Hospital. So check out this website and see if any of your loved ones need a soft, silky blanket!  Help us pay it forward and give someone else just a token of all the amazing support Cooper has gotten!  www.everythinghappy.com

I apologize in advance for the layout of the pictures! For some reason, technology is fighting me and winning. So after almost an hour of fighting, I forfeit my battle and have decided the message is much more important than the delivery!!

"Yet those who wait for The Lord will gain new strength; they will run and not get tired, they will walk and not become weary." Isaiah 40:31