Grateful Hearts

You made it Darlin,  

As Dr Kumar explained last night, it was a brutal surgery and it will be a painful recovery. But you are strong and he is hopeful that this is your last major surgery. That the bony reconstruction of your skull has now been accomplished.  He had warned us though that with your vulnerable scalp it's possible that some small areas may not hold.  We should know in the next 7-10 days and that would require further surgical revision or skin grafting. Additionally when removing one of your ribs the lining of your chest cavity was punctured.  We knew going in this is one of the risks. He sutured the opening closed and daily chest X-rays will help detect any complications that might require a chest drain to be placed.  

You spent the night in ICU with Tami at your side. It was difficult for you to communicate but the two of you are so close, that she was able to understand your level of pain and help the nurses manage your medication. 

You are so strong your vital signs all stabilized quickly and you were released from ICU this morning. Pops relieved Tami early in the morning, oversaw your early medications, and with Toliver gladly accompanied you back to 12 E. Room 48 where are you are surrounded by pictures and decorations from home.  The wonderful ICU nurses were charmed by Toliver and his joyous reunion with you!

So now I sit quietly once again watching you rest, your breathing a little labored, and your pain level back down to two out of 10. Even through all the pain medicine you're able to give the nurse a little smile and pass all the neurological assessments. Ending with what we have all been waiting and hoping for. Your Thumbs up game on spirit. 

With a grateful heart for all your enduring prayer warriors, surgeons, nurses, faithful friends, earthly angels, second chances,  and most of all for your indomitable spirit.  

God bless,

Mum

Surgery Update

We just spoke with Dr. Kumar.  It was a long surgery but he is very pleased with how the cranioplasty went.  He had to take four ribs, so the next couple of days will be focused on pain management and monitoring Forrest's lungs to make sure there are no complications from removing the ribs.  We will update more thoroughly tomorrow.  Thanks for the prayers.
-Team 44

Toliver thanks Dr. Kumar

We have begun again

Forrest spent the long day gallantly waiting in fine form, even with No food or water! Face time with friends, face book messages, videos, laughing at the new fabulous Paws Up for Forrest FB page, practicing his Ukulele, and reading our book together helped pass the time.  

Finally at 4:00 pm an Operating Room opened up and we headed down the all too familiar path to pre-op. Forrest and Toliver's fourth trip this stay, so they are warmly welcomed by the nurses there. 

I think Toliver could probably answer all the standard questions by now! 

Dr Kumar artived and went over the details with us one more time. As surgeons do he put his initials on the multiple surgical sites.  For good measure he added a happy face with what appears to be your trademark crooked smile ( was that a coincidence?) on your beloved forehead. 

You thanked him for waiting all day for you and with one of your goofball expressions sent him and his staff off to the OR laughing.  

Here you go again Champ. With all the extra prayers and love surrounding you today and just a little luck maybe this will be your last major surgery.  Sweet dreams. See you in post op in 6-8 hours.  

Mum, Pops & Toliver 

Post Poned... But still waiting

We were expecting to head to Pre-Op around 6 o'clock this morning.  We have not gotten any official word yet but we heard from another patient's mother, who just saw Dr Kumar, that Forrest's surgery has been bumped back due to an emergency appendectomy. So far we have not heard that it has been rescheduled.   It's good not to be the The most urgent emergency, but it is hard to wait.  So we've been reading your messages, playing video messages, and reciting this prayer that Pastor Ann from Emmanuel Church sent to Forrest for this morning. It turns out to be just perfect: 

Forest has been working on "doing nothing gallantly" all morning!  Thank you all for your continued prayers encouragement and support.  We will let you know when we know something more!  

Trying to sit quietly, but it is not my strength!

Mum

Monday's Surgery

In a couple months and 25 major surgeries later we will be coming up on 5 years into this journey for Forrest.  We hope the effort to finish the reconstruction of his cranium is in its last stretch.  The last three weeks of tests to determine why he is over draining his cerebrospinal fluid have ruled numerous things out but have not given a definitive answer.

Monday's procedure is a estimated 8 hour major one (major and minor being defined by length of anesthesia and proximity to brain) and the goal is to use Forrest's bone to close the areas on the sides of his cranium.  The hope is that not only will that finish the bony reconstructive procedure but provide protection against the atmospheric pressure that may be a cause of the over drainage.  Dr. Kumar and his team will harvest bone segments from Forrest's ribs. Forrest discussed this with me and he decided against having Dr. Kumar create him a new girlfriend named Eve from his rib "due to upkeep costs and Other considerations."

Once the partial struts of ribs are taken and plated into place on the sides of his head. Next comes the concern of the flexibility of the skin and the ability to close the wound with existing skin.  Followers of Forrest will remember last summer one of the major procedures (14 hours) was a free flap of skin muscle and fat from his back that was grafted onto his blood supply in his forehead and throat.  That has been whittled away in subsequent surgeries and it is possible that another one may have to be taken from his leg to provide enough skin.  Whether that is needed at all or whether it has to be done now or in the near future is the call of the surgical team while Forrest is on the table. When Mum asked Forrest tonight if he had any questions or concerns about the surgery tomorrow Forrest replied "No let's just get on with it already!" And so we shall. 

What are the concerns?  Risks from long term general anesthesia (Forrest has done longer procedures), infection (Forrest has beaten numerous bugs that have infected his various failed artificial material cranioplasties), post op pain (this will be significant due to the rib resection but he usually starts refusing the morphine like drugs by the second day post op and goes to Tylenol), blood clots and various other complications (get him up and moving ASAP).  So Mom, Del, Kay, Vinaya, Tami and Toliver are particularly good at encouraging him to get up and moving post op, no matter how much it hurts.
So that is the overview of the procedure.  We are blessed to have Dr. Kumar and his craniofacial reconstructive team and all of the nurses and techs at Hopkins, one of the finest hospitals in the world.  We are also blessed with Forrest's army of friends,prayer warriors and well wishers who if they have a Team 44 green wristband wear it tomorrow!  If not think of 44, always fighting the good fight.
Or perhaps more appropriately as Forrest, Nathan and JP sing, "Just keep walking".  https://www.youtube.com/watch?v=4hiXEU1TB-U 
Proud to be part of Team 44
Pops

JP, Ben and Daniel jamming with Forrest in room 48 today! 

Life long pals Peyton, Corina, and Sarah brighten up the day and bring their special comaraderie to Forrest.  

With so much love and support we cannot fail. 

Laughter IS the Best Medicine

We have a surgery date!  Dr. Kumar met with Forrest and Mum yesterday and confirmed that Forrest is scheduled for surgery on Monday.  It will begin at 7:30 in the morning and is expected to take 8-10 hours.  If we avoid any complications Forrest might just make it home by Thanksgiving!  If not we will give thanks for our many blessings here.  

Today marked 3 weeks of bed rest for Forrest.  We are so thankful for the hours of video chats and online therapy sessions that have kept his brain and body active.  Forrest had a great yoga session today followed by a special visit!  Abby and Megan, two of Forrest's Same Sky cast mates journeyed to Baltimore today (with Megan's mom, Tina) and spent many hours bringing much needed sunshine to room 48.  They shared stories of "Flat Forrest", the cardboard Forrest that traveled with the Same Sky cast to the American Music Therapy Conference in Kansas City this week.  Sounds of laughter carried into the halls as Forrest and the girls swapped tales and caught up on the past few weeks.  Even Toliver seemed to have a little extra twinkle in his eye all afternoon.

The girls brought Forrest a t-shirt from a BBQ place they ate at in Kansas City. 

Kisses!

Thanks for the continued support and prayers.

-Team 44

Inclusion Comes in All Forms

Forrest,

Today we found ourselves once more reminded of the amazing people that are a part of your life.  You are supposed to be in Kansas City, getting ready to perform with your Same Sky cast mates tonight at the American Music Therapy Association conference.  Instead, you find yourself flat in bed, experiencing it from afar.  But what an experience they are creating for you, Forrest.  Cardboard Forrest and Toliver have been popping up in videos and pictures from the trip.  From "dancing" in the background during a Same Sky flashmob on the airplane to "sharing" dinner with Ben and Veronica, you have been included in this trip.  The video messages, texts, photos, blog posts and Facebook messages from the cast have helped you feel a little bit like you are there with them.  Through the wonders of Skype, you were able to join your friends for rehearsal this afternoon and you will be able to watch the whole show tonight from the front row.   Although we know that this isn't the same as being there and experiencing it in person, we are so thankful for each person that has made it possible for you to be a part of it.  So when the lights go down tonight and the music starts, your heart and spirit will be right there on stage, alongside some of the most courageous people in the world.  Good luck tonight Same Sky, we love you!

- Tami and Team 44

- No surgery date set yet, we will keep you posted.