Day 1 Post-Op

Last night, Jake started to feel greater amounts of pain at night and was given additional pain medicine to assist in the process.  Jake has a catheter device or Bloc that has been delivering pain medication but it tends to wear off and the device will have to be removed tomorrow.  The additional pain medicine did help Jake sleep during the night giving him some much needed rest.  Not so much rest for Mom in the room worrying about her little boy.   

In the morning Jake did seem bothered and in a soft voice would simply state that his arm was hurting him.  The sickness subsided and Jake gained more of an appetite even urging us to order from the hospital menu.  Lucky Charms was the cereal he desired and it was a pleasure to watch him eat it along with a banana.  We saw the Dr.'s again and Jake was pronounced ready to discharge.   We assumed sometime around noon but by 9 Jake was smiling and proclaiming his desire to go home.  Who were we to argue and we made the immediate plans to discharge and leave the hospital.   We always look for the return of the smile as the post-surgery sign that our little boy is back and he delivered on the promise.  Jake seemed in great spirits with help of his pain medicine and he was thrilled to be back at home.  The hardest part with tending to Jake is making him aware not to move without what looks like a fanny pack which contains the Bloc device.  Jake seemed very happy for most of the day playing with some of his toys and even commented, No homework!  

Dealing with his post-op care, we recognized how staying home in California made it so much easier versus dealing with a long flight home from Boston.   Jake showed off his baby blue cast to his siblings when they got home from school and soon it seemed like the household was back to normal chaos.   By early evening, Jake started to show signs of discomfort and by 7pm Jake was yelling about pain.   Too soon to take his medication we did what we could to calm him down and got the approval from the Dr. to utilize Ibuprofen in staggered doses.   Now Jake is sleeping on our bed where we will keep him for the night to administer his medication throughout the night as well as be close to deal with anything that might arise.   We are running on little sleep so we too hope to join Jake in what we hope is a deep slumber.   Thank you to everyone for their kind thoughts and words, we certainly appreciate the support.

Home Sweet Home!

10/29 Surgery

A bittersweet day as today marked Jake's left hand surgery but due to a postponement today is also Olivia's 5th Bday.  We celebrated already as a family knowing we would leave the house before she woke up and would not be home to see her.  Always a sad notion but Jake has always helped us have a healthy perspective on what is important in life and we know Olivia supports the brother she loves so much.

The day started early as we had to leave the house at 5am to arrive at pre-op time of 5:30 at Childrens Hospital.  During the routine pre-op exam, Jake started to develop anxiety, asking questions about why he has to have surgery.  He is getting older now and it is probably expected that he will remember his times in the hospital and associate them as a negative experience.  We do try to explain what the surgery will accomplish so he can at least grasp the necessity but nevertheless his reaction and skepticism is understood.

Interesting sign as we headed up to pre-surgery, a woman sharing the elevator was wearing a Sons of Anarchy sweatshirt.  Funny how things like that make you wonder about signs even though work was the furthest thing from my mind.   We met with the team of Drs to discuss the surgical plan with our main goal of communicating Jake's allergic reaction during his last surgery that caught everyone by surprise.  We wanted to ensure we left that problem in Boston as subsequent visits to an allergist have yet to confirm the exact source although the likely culprit  is porcine which is contained in a gel foam used in certain surgeries.

Before long Jake was given medicine to calm him prior to surgery.   Soon he had the swagger of a drunk sailor with a big smile on his face.  Garbage truck videos on YouTube calmed him as we awaited the 7:30 surgery time.  Then it was time and we kissed our brave little guy goodbye and headed downstairs to wait.

The estimated surgical time was three hours which ultimately turned out to be over four.   We had the grandparents with us to pass the time and help calm us as we watched the digital board for a sign of completion.  Finally, we were told to head upstairs to meet with the hand surgeon.  Due to the surgery running an hour longer, our worries grew as we waited over 20 minutes more for the Dr. in the consult room.  After what felt like an eternity, Dr. Panossian entered to allay our fears and pronounce the surgery a success.  Jake's abnormality in his left thumb was corrected by straightening it while deepening the web space between his thumb and forefinger.  Additional fine tuning to his other fingers was performed to improve upon skin grafts from his prior surgeries.  Best news, there was no allergic reaction so we dodged the mystery that we had been so worried about.  Unlike his previous right hand surgeries, Jakes's cast ends before the elbow so we hope that alleviates prior issues experienced with above elbow casting.

It was off to recovery as we rushed to see our boy.  Jake was agitated as was the expected reaction coming off of the anesthesia.  We did our best to calm him and soon he fell back asleep to rest some more.  When he awoke, Jake threw up a bit which has become an expected post-op ritual.   We took turns so the grandparents could see Jake. Afterwards, my parents wished Jake well and Sam's parents went to visit Luke and Olivia at the house especially because Dan arrived this morning from Israel coming straight to the hospital.    We made our way to Jake's room and proceeded to deal with his continued reaction to the anesthesia.  Poor kid trying to throw up with nothing in his system.   We spent the rest of the late afternoon helping him get comfortable and soon he was resting peacefully again.
By 5pm Jake said he was hungry and we delivered a twin cherry Popsicle.  It was great to watch him enjoy sucking on the Popsicle although unfortunately it was short-lived as Jake has continued to be sick all evening.  We hope he feels better soon so we can be released tomorrow but we will take it one step at a time.  

Sam will stay with Jake tonight giving him the motherly love he needs.   We hope tonight brings Jake a restful night and we can get past the sickness stage.

At least Day One of surgery #10 is over and our little fighter continues to be brave on his journey.

Left Hand

Tomorrow, Jake will undergo his 10th overall procedure and this time it marks the straightening of the left thumb and improve upon the web spaces between his fingers.  Until fixed, the thumbs of Apert Children grow incorrectly outward at the knuckle and need to be corrected.  This procedure also marks the first time we are staying in Los Angeles for a hand surgery as we have transitioned to Dr. Andre Panossian at CHLA to handle the procedure.  Dr. Panossian used to work under Dr. Upton in Boston and has always handled Jake's aftercare following his other hand surgeries.   We now feel confident moving forward with any future procedures here in Los Angeles which is quite the relief to eliminate the travel to Boston factor and logistics with the family.   Jake's biggest concern has been the distractor which was the device we used last time in a two surgery process to create space and ultimately lengthen the right thumb.  For his non-dominant hand, we made the decision to forgo this step and if ever needed we could revisit at a later point.   We feel confident he has gained the function he needs in his right hand and it isn't as imperative for his non-dominant hand or worth the pain Jake had to endure last time around.    We hope to be the first surgery on the schedule and we should have an operating time confirmed today but it should be an early start around 5am arrival at the hospital.
Keep Jake in your thoughts as he continues on his journey.  We will update the blog late tomorrow evening.