"Keep on Keeping On"

That was your response to Dr. Kumar yesterday evening when he explained your "markedly" improved CT and his desire to keep you here at least 5 to 7 days in order to ensure your continued progress.  While we were surely hoping to get home sooner there've been so many complications and setbacks that staying a few more days to make sure you stay on the right track sounds like a good idea.  

        Keep on Keeping On with Dr K!

So the days progress and you are making the most of each one: 

With Nick spotting you and he kicked your soccer ball all the way around the unit TWICE!

With "fun sized" ( her words) PT Amy you worked on balance and strength. Gotta have you ready for Del time when we get home! 

Hamming it up with Christina while beating her at Connect Four. Laughter truly is the best medicine! 

Today your team of neurosurgeons, plastic reconstructive surgeons, neurologists, and infectious disease doctors will continue their great collaboration on your behalf. You have a lot of important and fun things yet to do in your life Forrest, so we will as you say, "Keep on Keeping On"! 

With love and gratitude for each day of healing,

Mum

Recharging with Friends!

It's been a good weekend Forrest. Your vital signs have stabilized.  You are resting well and regaining your strength and appetite. The challenge now becomes how to break up the long hours in hospitals, hours that seem to run endlessly together.   This weekend we had a lot of great help with this particular challenge!

Yesterday Pops returned and brought Aunt Bev and Cousin Susan from Phoenix to visit. You took the opportunity to read some of your favorite Calvin and Hobbes to them! 

Today, One of your best pals from Hill School, Nick Weeden, came to join you on your stroll around the unit and....

to demonstrate his preferred bandana wearing style!  A rousing air hockey tournament ensued which included celebratory Sun Chips! 

Before your FIRST Nick departed for Dartmouth this afternoon, your SECOND Nick (Sybertz) arrived to join in the fun! 

               SunChips all around! 

What great friends you are blessed with Forrest!  They brighten our days and encourage you to stay happy and strong.  God Bless their generous hearts!l!

Refreshed and reinvigorated from your weekend visitors, early tomorrow morning we begin again with a follow up CT scan, lab work, and consultations to determine the next steps in your journey. We are hoping and praying that the CT will show great progress and we will be headed home this week! 

With love and gratitude,

Mum

Post op Fever

The morning started out with a bit of a worry over a low-grade fever and a serious case of the "blahs". We relied heavily on all of your thoughtful and caring messages and blog comments to lighten Forrest's load.  Your faith and optimism really helped recharge Forrest and his team today!  We can't thank you enough!!!

Polypharmacy is the term used for just too many drugs!!! Even when they're individually necessary,  they all have interactions and side effects.  Thankfully today we were able to discontinue one more of the seizure meds and your temperature began to come down mid day. 

Culture results came back this afternoon. Five of the eight cultures taken intraoperatively grew the same bacteria, a Klebsiella. Unfortunately it is resistant to most common antibiotics, but the terrific infectious diseases doctors here have chosen correctly and the big gun intravenous antibiotic you're already on has good bone penetration and is effective against this organism. So while it's terrible to have osteomyelitis, or a bone infection, of your new graft we have the culprit's name and it's number. And we are going to destroy it!!!  

After a nice long nap with Toliver at your bedside and your first Post-op shower you rallied and completed THREE laps of the unit! Making friends and introducing Toliver to other patients along the way. There are a lot more Labrador induced smiles on 10 North tonight! 

I'm not sure who had more fun on your stroll around the unit, you or your terrific RN Steph??? 

We are grateful beyond words for the amazing Johns Hopkins nursing staff.  They are smart, caring, gracious, meticulous and talented professionals. They stop in just to see you and are so encouraging and upbeat. 

Pops will be back tomorrow and maybe, if you're up to it, we will get you off the floor for a change of view.   Sweet dreams Champ. You are on your way! 

Mum

Game On!

Forrest is having a much better day today.  His speech, balance, and energy have improved remarkably since yesterday.  His spirits are brighter and in turn, he is brightening all of our spirits with his characteristic charm and sense of humor.  With Toliver at his side and PT Amy spotting, Forrest was able to walk a lap of 10 North this afternoon, and he told Amy he was as "cool as a cucumber" before singing out "I'm alive!!!"

We are still working through medication adjustments with multiple specialists.  Earlier today, Dr. Kumar said that managing Forrest's case is like landing a jumbo jet - there are a lot of little adjustments to be made and each tweak affects many other things.  We don't want to make any big moves, we are just going to go slow and take things one day at a time - to which Forrest replied "Game on!"

Celebrating the first lap around 10 N

Austin's jokes were much more entertaining today, earning applause instead of snores.

Toliver attentively stays by Forrest's side each day at the hospital.  

When not at the hospital this evening, Toliver brought Mum one of 44's slipper to let her know he missed his boy.

We are so grateful for the continued prayers, encouragement and messages.  

- Team 44

Out of ICU!

It has been a hard day for you Forrest,  but we have been blessed with progress, Tami graciously stayed by your bedside overnight, keeping watch along with ICU nurses. Since you were unable to take your current seizure medicine last night we were grateful for Tami's presence and everyone's prayers. 

Today you are struggling with postop pain but you are still offering your characteristic thumbs up, an occasional brief smile and even a pat on the back for nurse Caitlin when you finally got up right on your feet for a minute. Your strongest clearest words were for your best bud Toliver. who has remained faithfully at your side. 

You were released from ICU and returned to 10 N, where you and Toliver are well known and loved. There are numerous consultations on going regarding medications and concern about interactions between antibiotics and anti-seizure meds. But for now we are grateful to have the surgery behind you and are looking forward to A brighter tomorrow.   Sweet safe dreams, Champ.

Thank you all for the prayers, messages blog comments, positive energy, and texts.  We share them all with Forrest. 

Thumbs up for Austin and Martin even though you couldn't keep your eyes open!

Post-Op Update from ICU

Dr. Kumar came out to talk with us. He is extremely pleased with the procedure and the closure. He believes some of the absorbable mesh had become colonized with bacteria and could have contributed to the breakdown. The offending mesh has all been removed and the wound flushed and cleaned.  He got at least half of the open space between the bone graft and muscle flap closed. He is hopeful that with new drains in and by temporarily turning the shunt off, Forrest's Ventricles will expand with CSF and his brain will blossom to close the remaining space.  We will likely be here at least 7 to 10 days to make sure everything is stabilized and it is safe to return home. 

Dr Kumar told us that he prayed for Forrest last night too and is thankful for all our prayer warriors. 

I'm with Forrest now in ICU.  He's offered his first thumbs up but indicates with his fingers that the pain is four out of five so a pain pump is on its way.  Hopefully with some drugs on board, our Champ will get some well deserved rest.  

With a grateful heart for the nurses and doctors watching over Forrest and for all your love, faith prayers, & positive energy. 

Mum

Amazing

Last Monday we sent a picture of the deteriorating wound on your scalp to your surgeon. Dr. Kumar called right away and said, "Yes, Forrest will need more surgery.  I will see you on Monday the 13th and surgery is scheduled for the morning of the 14th."

Knowing you are facing more surgery at Johns Hopkins tomorrow, we packed an amazing amount of life into this past week. And we are grateful beyond measure for all of your friends and family who have filled up your emotional tank to the brim.  You are strong.  You are ready. 

On Saturday You had your first independent outing with Tom all the way to the Kennedy Center to see the Broadway musical "Once".  Although I shadowed you just in case you needed help, you had an incredible musical adventure with Tom. I heard later that you two were dancing and singing in the car all the way home! 

Tom Forrest & Toliver all enjoyed "Once"!

Of course some water games with Ben were in order! 

PT takes on a new stance at BrightWood! 

Gio and Nick agree it's nearly a Bulls Eye!

APTB mentor Lauren mesmerizes Team 44 at her recital. You sweetly whispered to her "I wish I had brought you flowers too".

Today at Hopkins, Toliver knew the CT drill all too well. And Scott, the CT technician, was gracious and familiar. He knew you by name and told you he follows your blog.  He is cheering for you too. 

There is no hiding that today's  CT results  are disheartening.  Hoover was unable to close the gap between the bone grafts and the muscle flap. Dr. Kumar was clearly disappointed to see this glaring deficit on the computer screen.  But he was encouraged that the bone grafts appear strong and in several places have fused to your native bone.  He explained that, while we took seven or eight giant steps forward, we have now moved backwards three or four steps. But with the bone grafts intact he is hopeful that he can surgically close the gap, excise the devitalized skin, place some drains and get you back on track.  They will take lots of cultures in the OR and hopefully we can fine-tune your antibiotic therapy again.  If all goes well we will be back at Brightwood in a week or so. 

Looking at those CT scans today, it's hard to catch my breath.  How do you do what you do? How do you get through your day, often with a smile and a joke, a little jig, always a thumbs up. Your Bring it On Sparkle.  Well Champ, you set the bar pretty high.  We will do our best to meet your Amazing Mark and be there for you tomorrow... and the next day. Whatever comes, it's thumbs up and bring it on! 

With a hopeful heart,

Mum and Team 44