Home and Resting!

Yesterday was a busy day and exhausting day.  I think Erica had a fairly good night of rest, but Sue struggled with the rock-hard bed and many visits from nurses checking Erica's vitals, changing IV drips, etc...Starting at 7am, Erica was visited by many different doctors and nurses throughout the morning.  All were very impressed by how well she was recovering.  Aside from a bit of lingering nausea, she had managed to eat a light breakfast.  Doctor O'Neill and his team stopped by with great news.  Erica was well enough to head home after she received her last dose of steroid/antibiotic via IV sometime between 11 and 12. 

Superman and Supergirl!

We learned that during Erica's surgery, they had been using a new software program and head frame.  They were impressed with how "slick" and "smooth" the surgery went using this new software/hardware.  Erica was also the very first patient at Children's Hospital to undergo Visualase surgery and not need to go to ICU post-surgery.  They said she is a trend setter for future patients! 

We continued to have many visits to our room.  Mimi and Sam arrived to help us pack and get discharged.  Erica also had several gift deliveries from her grandparents!  Thanks for cheering up the morning!

Finally, a well needed hug from brother!

Checking out her pin-holes from the frame

Thank you Grandma and Grandpa Charron!

Thank you Greg, Lindsey, Grandma and Grandpa Martino!

 
Erica received her final dosage of antibiotics and had her IVs removed.  We dressed, packed, and checked out around 12:30  We couldn't believe that 12 hours earlier, Erica was having a tumor removed.  Incredible what current technology can do for quick and painless recoveries! 

Mimi drove us home.  Erica and Sue slept the entire ride and then some more when we arrived at home.  Thanks to Mimi for taking care of Sam while the girls got rested up!  The rest of the day and evening was very low key.  The whole family was mentally drained from all that we've been through.  Erica decided it was time to shower and wash out her hair.  When we took the hair-tie out of her hair, the side pony that she was wearing simply stood in place from all the gunk left over from surgery.  She sat in the shower for some time letting the water run down her head.  She had lots of dry blood and left-over soap from when they washed with disinfectant soap and alcohol. After the shower, mom carefully brushed her hair out and took a good look at the incision.  It looked clean and healthy.  We rested the rest of the evening and had a wonderful night sleep. 

Ahhh...nothing like clean hair!

That's all folks!  That's the incision.  All that remains from a tumor being removed.

Friday has been a wonderfully restful day.  Erica is excited to see her good friends tonight.  They should be by in a bit for a visit. 

Did I mention we are 2+ days of being seizure free?  Still keeping fingers crossed.

What a day!

Erica is recovering wonderfully from her surgery today.  We spent about 45 minutes in the recovery room.  Mom, dad, and Mimi were all by her side as she came to to awareness.   She had all the typical side effects that come with being anesthetized.  She was extremely tired, dry throat and mouth, and low oxygen levels at times.  Otherwise, she was in good condition; enough so that she didn't have to spend any time in the ICU.  The wheeled her off to her room on the 6th floor which was the room exactly next to the one we spent a week in!

Sam was very anxious to see Erica and was relieved to see her in her new room.  It was touching to see how tender and concerned he was with Erica.  After getting settled into her new room and bed, she napped for a few hours. Occasionally, her oxygen levels would get low and her monitors would beep at us.  Sam was the first to run to her side and coach her on taking deep long breaths.  She continued to nap in between nurse check-ups and brief conversations with Mom, Dad, Mimi, and Sam.  We all quietly played Pay Day while she napped.  Sam soon discovered there was an X-Box and played ice hockey for some time.

Around 4pm, she woke and needed to use the restroom.  She had been complaining of a bit of nausea.  She was slow to get to the restroom, but even slower to get back.  She didn't want to leave the bathroom because she wanted badly to vomit.  We finally convinced her that she would feel better  laying in her bed and would have a little bucket close by.  Nurses gave her some anti-nausea medicine which seemed to do the trick.  She never did get sick. When she was at her grumpiest, there was a knock on the door with a flower delivery.  The beautiful surprise couldn't have come at a better time.  It certainly lifted her spirits.  Thank you Preston Staff for such beautiful flowers and well wishes.  Erica and I couldn't work/educate with a better group of people.  So fortunate to have them in our lives!

Dad left for home at dinner time.  Mimi and Sam stayed to eat dinner with us.  Erica continued to fall in and out of sleep throughout the evening, but continued to also improve in alertness and demeanor.  She was able to muster up a bit of energy to Face Time with Sanne and MJ.  It was therapeutic I think.  She fell back to sleep looking a little bit more at peace.

Dr. O'Neill came to check on Erica after dinner.  He assured us that everything went as planned in the surgery and that she is recovering wonderfully.  He thinks that if she can stay hydrated without IV and is eating okay on her own by tomorrow morning, then she should be good to go home tomorrow afternoon!  She has a one-stitch incision above her left ear.  They described it as a LONG stitch that is like a shoelace starting at her skull and going up to the surface.  She also has three pin marks from the head frame.  Two on her forehead and one on the back of her head.  Everything is healing great.

Dr. ONeill's very fab O.R. hair styling!

It is still hard to believe that Erica had a brain tumor removed today and will likely go home tomorrow with a single stitch!  We can't be more thankful to innovative thinkers, technology, and scientific advances.  We are keeping fingers crossed that Erica's epilepsy has been cured.  No seizures to speak of after surgery. :0)

Today can't come to a close without thanking so many family members and friends that sent positive messages, prayers, emails, texts, calls, cards, delivered updates to others, gave hugs and held hands. Today will be a day remembered as one filled with love and support, not traveled alone.  From the bottom of our hearts...thank you!

Erica posted this yesterday on Instagram!

Tumor-free!

Erica is out of surgery and doing wonderfully. Doctors said all went as planned. A biopsy of the tumor was taken and sent to pathology. Tumor was then lasered. She is in recovery and will be heading to her room within the hour. She's one tough cookie...that is TUMOR-FREE cookie!

Surgery has begun!

Erica, Sue and Sally arrived at Denver Children's Hospital at 5:30am.  We were quite tired after not getting a good night's sleep.  Erica was especially tired due to two seizures last night.  A nurse got us settled in and asked lots of questions.  Then Erica experienced yet another seizure...hopefully the last one ever.  She rested for a bit, and then it started to get quite busy.  The two "child life" nurses that would document the surgery with pictures and a story arrived.

Erica with Felix, her lucky elephant!

Getting ready for surgery!

Soon after, Dr. O'Neill (aka Superman) arrived.  Yes, he looks like Clark Kent in the office, but we suspect he turns into Superman in the OR.  He has a VERY calm and confident demeanor and is very easy on the eyes.  :-) He autographed his initials behind her left ear to indicate the general location of the surgery.

Dr. O'Neill's Autograph

Lots of other nurses came in to do physical checks.  Then a visit with the anesthesiologist.  He's quite a character!  Throughout it all, Erica remained very calm, brave, and positive.  She was SO ready to get it over.

The anesthesiologist!

Because Erica has a broken ankle/leg, they wheeled her down to the CT room.  We were able to go with her.  Along the way, many of her doctors and nurses joined us.  We met up with a nurse holding the hardware and frame that would be placed on her head during surgery.  It was all becoming very surreal.  We arrived in the CT room with about a dozen nurses and doctors.

On our way to begin surgery

Team in CT room waiting on Erica

Dr. O'Neill is furthest on the right by her elbow.

The Queen's Crown (frame for her head during surgery)

They got her settled on her bed and had her select the "flavor" of air she'd like to breathe.  They rub smelly chap-stick in the mask that will put her to sleep.  The anesthesiologist asked her which of three stories she'd like to hear; the zoo story, the jet pilot story, or the nail polish story.  He warned her that he struggles telling the nail polish story, but all three stories end with something smelling bad.  She giggled and chose the zoo story.  She held on tight to her lucky elephant, began to cry a little, and watched me as they placed the goofy gas mask on her.  We gave her kisses, told her we loved her, she whispered, "love you too", and quickly drifted off to sleep.  She didn't stay away long enough to hear how terrible the monkey house smelled.

Off to sleep!

 At about 8am, they escorted Sue and Sally to the waiting area and let us know that for the next hour, she would be having an IV started in several places, intubated, and catheterized.  Additionally, they would be using the CT scan to set the frame on her head and locate exact measurements of the tumor and incision location.  They assured us they would call every hour to provide us updates.  And the waiting began...

After about an hour, the OR nurse called to inform us that they are leaving the CT room and heading to the OR.  Erica was doing great.  We took a walk down to the gift store, used the restroom, and continued to make updates with family and friends.  At 10:00, the nurse called again to update us that they have made the incision, completed a biopsy, and are inserting the fiber wire for the laser.  Soon they would be heading down to the MRI to zap the tumor!  Erica was continuing to do very well. 

Preparation for Surgery

Erica had her pre-operation appointment this afternoon.  She first had blood drawn to check that she is healthy and ready for surgery.

Just a bit nervous...

We then met with a PA for a physical and spent some time discussing what to expect tomorrow.  First off, her blood-work came back perfectly normal and she is ready to get that tumor removed! She was most excited to hear that she will not have her IV placed until after she is under anesthesia.  She watched a "video book" on an iPad of what to expect before, during, and after surgery.  They did mention that since her surgery is a very new procedure, they do not have a "video book" presentation to show her all the cool machines and technology that will be present during her surgery.  They asked if she would be willing to have pictures taken before, during and after so that others like her can have better pictures to view before their surgery.  Of course she was willing, especially since she will get copies of all the pictures and be their "poster child" for kids undergoing Visualase surgery. 

On our way from the hospital to the hotel, Erica had a seizure.  We are hoping that it was the very last seizure she will ever have! We've arrived at the hotel and are resting.  Looking forward to a fun night of dinner and swimming!  After swimming, Mimi (Erica's grandma) is treating her to a foot massage. Her foot needs a bit of TLC after getting the cast off today.  Erica was also relieved to hear that she doesn't have to remove her amazing toe nail polish professionally done by MJ!

While Erica and MJ were face-timing on their phones and making super silly faces, the adults decided that a glass of wine tonight might be nice.   Mimi went to the hotel desk to ask where the closest package store is.  They sent her to the UPS store.  I guess no one working at the front desk of the hotel is from the North East! Mimi has returned from her adventure.  Going to sit and have a glass of wine. 

Yup...Broken Tibia

Erica had her follow up appointment at Orthopedic Center of the Rockies for her ankle. They removed her cast and took more x-rays. The x-rays showed that her tibia was healing as evidenced by a calcium web growing around a minor fracture. He described it as a tri-plane fracture in her tibia. The good news is she had been wearing a cast which is best for a break.  Bad news is she will have to wear an aircast boot for three more weeks.  She can remove it when she's sleeping and bathing. She can also walk with the boot. 

Interestingly enough, Erica received a little elephant figurine for good luck yesterday. She had it with her all day in her pocket, but noticed that its leg had broken off by the end of the day. Daddy is going to mend the leg today. At at least the trunk is still up for good luck! We are on our way down to Denver for Erica's pre-operation appointment. We might have time to hit IKEA!

                 

                                                                  

  

 

                                                                           

We welcomed Mary-Jo to our home!

Sam had an opportunity to adopt a crayfish from his classroom. He was asked to write a persuasive letter describing the reasons why he would be a good pet owner for a new crayfish. Although Sam dislikes writing, he was very motivated to write this letter to his teacher, Mr. Warren. Sam spent several hours working on his persuasive letter over the weekend. He was so excited Monday morning to deliver his letter to Mr. Warren. When I pick Sam up after school, he was grinning from ear to ear and holding a Tupperware container. He was the first proud owner of a crayfish from his classroom.  Since Sam was going to name his crayfish Mary if it was a female, and Joe if it was a male, we ended up naming it Mary-Joe because we could not determine its gender. 

Mary Joe had lots of playtime with Sam yesterday.  And today he had his biggest adventure ever. Sam left the top of his home off. When we arrived home this afternoon, Mary Jo was missing! After a thorough search of the house, we found Mary Joe trying to sneak under the couch in the den. She is safe in her new home again! 

So, Sam is pretty darn happy. Although we (Sue and Carl) weren't super excited to take in a pet, we were most certainly willing to accept the excitement and motivation of an 8 year old.  

10 days and counting!

Erica had a fairly challenging week overall.  Besides several early morning visits to the eye doctor for vision field tests (which she claims are super boring to take), seizures have been sneaky lately.  She has not been experiencing an "aura" before she has a seizure, which makes it so that she has no warning and way to alert someone that a seizure is about to happen.  She is having seizures daily, sometimes two or three.  I called Erica's neurologist to inform them that seizures have been increasing again.  Erica has weaned off her second medicine, but still is taking her first and third.  Because she is taking almost the maximum allowable dosage for her weight, we were only able to modify and increase her medicine a bit. She has been really frustrated and tired of the massive amount of anti-seizure medicine she takes each day.  I am so proud of how positive she has remained through it all, but I totally understand why she is cranky lately.  Besides the amount she has to take and the yucky side affects, she doesn't feel they are helping reduce seizures much at all.   

480 pills...to be consumed in one month!

AM and PM dosages

 So we are counting down the days till surgery and an end to our lives dictated by seizures.  At least the doctor appointments this week got us up early enough to see some beautiful Colorado sunrises. 

Beautiful fall sunrise in our front yard!

We are looking forward to a week without any doctor appointments.  I guess this will be the calm before the storm. Sue's Mom, Sally (Mimi), arrives on Thursday from CT.  She will be staying for 10 days and helping out.  We are REALLY looking forward to some much needed mom/grandma time. 

Icing on the cake...

Referred to orthopedic today for Erica's ankle injury. More x-rays confirmed no break, but a stress to the growth plate. Severe sprain. More rest needed to allow it to heal. Put on a cast for three weeks. Thankfully, cast is waterproof and she can walk on it when pain subsides more. Cast will come off day before surgery. 

Wada test is complete

At 11:25, Dr. Boada, Dr. Park, Dr. Gretchen, and three nurses greeted me in the waiting area.  They said things went very well and she is doing great.  They are removing the EEG leads and preparing her for recovery. 

The Wada Test gave doctors a lot of great information.  When Erica's left hemisphere was put to sleep (which was presumed to be her dominant side), they were surprised with how strong her right hippocampus was.  The hippocampus is responsible for memory, and often times one lobe of the hippocampus does the majority of the work.  It turns out that if Erica's left hippocampus was not functioning or needed to be removed, her right hippocampus would be able to keep up and compensate.  This was great news.  When they put the left hemisphere to sleep, they quickly found that Erica is most definitely left hemisphere dominant and that her language center exists there. More great news was that language has not been impacted by tumor and seizures. Unfortunately, the left hippocampus was not keeping up with memory like the right side was.   Since she is left dominant, then the hippocampus has most likely experienced decrement due to the seizures and/or tumor.  The tumor may in fact be releasing toxins to the brain tissue and hippocampus.  So removing the tumor may in fact allow them to heal and perhaps we'll see an improvement in memory.

All in all, I think we got good news.  Doctors said that the results couldn't have been better and they were pleased with what they learned.  They were also impressed with how well Erica handled such an "odd" test.  She experienced a very unique procedure, was awake and responsive through it all, and can walk away with a fascinating story to tell.  Plus, they even printed some cool pics of the procedure for her to share with those that can stomach it. 

When I first saw Erica getting rolled into her recovery room, she looked exhausted.  It didn't take long for me to figure out that the anesthesia that they used to put both hemispheres of her brain to sleep made her really loopy.  She was talking loudly, making funny faces, giggling, squeezing my cheeks, smacking at my dangly earnings, and sharing everything that came to her mind (without any filter).  She was really irritated with the sand bags laying over the leg that the catheter was in.  It forced her to keep it still, which was hard because she was so wiggly at first.  I fed her lunch since she had to remain laying down.  Good thing for bendy straws that can deliver chocolate milkshakes to a person in a horizontal position!  Let's just say it was an interesting few hours before she finally fell asleep. 


When I asked for a smile, this is what I got!



Getting sleepier...

Finally asleep. 

Now that she's resting quietly, we have several more hours to wait out before we allowed to leave.  Once we head home, she will need to remain lying still till the morning.  We've decided to keep her home tomorrow and let her rest.  Doctors have said she'll need to take it easy, which might be difficult as she hobbles around on crutches.  So staying home might be the best bet.  I think she'll also be incredibly exhausted emotionally. 

So at this time, her upcoming appointments/procedures are:
- Fri, Oct 4 - Recheck on her sprained ankle
- Tues, Oct 8 - Visual Field Test consultation with her eye doctor
- Tues, Oct 22 - Pre-operation appointment and lab work
- Wed, Oct 23 - Surgery to remove brain tumor (laser surgery still a go!)

Thanks to everyone for your emails, calls, texts, and positive thoughts being sent our way! 

Wada Test has begun!

As mentioned in a previous post, the Wada Test is a procedure that is important to complete prior to brain surgery.  The purpose of the procedure is to test both hemispheres of the brain for memory and language function.  The test requires a catheter to be placed in an artery in her groin and fed up to the artery that sends blood to the brain.  They will then will put one hemisphere of her brain to sleep and test the function of the other.  Then they will repeat this process.  The procedure takes about 1.5 hours to complete, followed by 4-5 hours of stillness to allow the artery to heal and seal properly. 

Needless to say, we were all really nervous for today.  We started out our morning at 5:30 and confronted our first obstacle, Denver traffic.  The next obstacle was getting an IV started.  After 5 attempts (twice in her left arm, once in her right arm, once in her right hand, and lastly in her left hand), she finally had her IV in.  Lots of tears followed by a horrible seizure.  While she was getting her IV started, the EEG technician was getting her leads glued to her head.  Luckily, he could see on the EEG monitor the start of the seizure and end of it.  She was very confused afterwards and attempted several times to yank out her IV.  After a bit of time, she was calm and aware. The staff at Children's were amazing.

 

Waiting on the docs!



Dr. Boada (left), Gretchen, and EEG technician.

Getting hooked up!

Erica was wheeled down to the procedure room at 9:30 and I was able to stay in the room for a bit.  Her team of doctors and nurses were preparing.  There were a few familiar faces.  Lauren is a nurse and designated as her support person throughout the procedure.  Her neuropsychologist, Dr. Boada, was there and would be communicating with her throughout the entire process.  Additionally, Dr Park, her neurologist, was there as well.  Lots of other nurses, technicians, and doctors.  It was the first time I've been in a surgical room.  The amount of machines and computers amazed me, intimidated me, peaked my curiosity, and in the end,  comforted me.  How lucky we are to be in a state of the art facility with some of the best doctors in the nation. 

Because of Erica's seizure prior to the procedure, Dr. Boada informed us that we had to wait until Erica's recovery was complete.  This created a challenge because her recovery time varies from seizure to seizure.  He sat with Erica and me for a bit and asked her lots of questions to see her response time and ability to answer without struggle and confusion.  She responded very well, plus got all the math questions correct!  It took her longest to spell "world" backwards.  We chatted for about 10 minutes longer about the events of the last few days and what we have planned for this weekend.  We decided that she was back to the good ole Erica.  I gave her a hug and kiss and reminded her of how much I love her.  Through tears, she smiled and said "love you too". 

I'm out in the waiting room while she is having the procedure and test right now.  First injection to put right side of brain was at 10:15.  Second injection to put left side of brain is at 10:45.  I expect to see her in recovery in less than hour.