Saturday, October 7, 2017

Over...and Out!

We had to get up way early to be at the hospital at 0630.  David and I got up and were getting ready, and we tried to let Jacob sleep as long as possible.  He looked so sweet sleeping, it was hard to wake him up...

He woke in good spirits though, and we made our way to the hospital.  In no time we were checked in and back in preop.  Jacob did great, and was excited to put on his cape, which he made sure to pack himself in his bag the night before.

BCH's preop is pretty low key, as they do not to anything to your child except take a set of vital signs.  Everything painful is done after they put them to sleep.  It's awesome.  So all we did was have a brief chat with our physician, anesthesia, and the nurses.  It was interesting, and I mentioned yesterday, how at our preop appointment, anesthesia had scoured all of his past procedure records and were dissatisfied that they couldn't keep Jacob from experiencing post-op nausea and vomiting.  Again before the procedure they reinterated this, and discussed some of the strategies they planned to try this time to improve his experience.  You could almost see it in their faces..."oh he throws up every time...Challenge Accepted."  I was amazed that they didn't just dismiss this response to anesthesia, as some people just respond that way.  Nope.  They were determined to make it different this time.  Once everyone on the team was ready, I went back with Jacob into the OR.  There I held his hand as they put on his watermelon smelling mask, and coached him on breathing deep.  He did so great!  He was very calm and unafraid, and the team was so amazing.  They just talked to him like everything was normal, and talked about what a good diver he was, breathing into the mask.  They are so awesome to learn about your kid and find out what speaks to them.  I was so proud of a couple minutes he was completely asleep, so I kissed him and went out.

Now our wait began.  We got updates from the surgery liaison every hour, and finally our doctor  appeared to tell us how it went.  Jacob did really well during the procedure.  They were again surprised at the size of the lesion, and everywhere he treated an open channel, the blood would reroute and open another one.  It seemed like it was a difficult process, and he emphasized the size of the lesion, and the necessity of ongoing aggressive treatment to prevent complication.  There again was involvement in the channels going through the ribs, and re invasion of the pleura.  He also said there was some connection between the abnormal venous malformation lesions, and drainage of these abnormal channels into the spinal veins, which is a big concern.  He also had to take great care not to get any of the toxic sclerosant into these veins.  He emphasized the necessity to constantly be aware of any signs of neurologic compromise.  He also expressed concern with the muscle on his back.  This muscle is becoming very damaged from ongoing invasion from these vascular lesions, and he is concerned about its function, and Jacob's posture and arm strength as a result of this.  He wants Jacob to start some physical therapy once he recovers, to reduce the scar tissue and subsequent tightening of that muscle.  We will also of course continue to follow with the ortho specialist, the curvature and rotation of his spine.  Bottom line, is that Jacob continues to demonstrate the need for ongoing aggressive treatment of this lesion to maintain his health and growth.  He still feels we can continue to attack this from a sclero approach (thankfully), but these trips and procedures will unfortunately be a necessity for the foreseeable future.  Again though, I will try to be thankful we have options for treatment, and that this lesser invasive approach continues to be effective.

We finally got the green light to come see our boy.  He was resting quietly in PACU, and was looking pretty good.  We let him sleep as long as possible, hoping he would sleep through the worst of the pain.


Finally, they were ready to see him wake up, so we started to rouse him a bit.  He woke up peacefully, and was very calm, unafraid, and seemingly with minimal pain.  He even tried to give me a smile.

He soon was ready for a snack and a drink, and I held my breath for his usual MO of getting sick.  It never came!  Our anesthesia team came by PACU 4 times to check and see if he had thrown up, and were pretty pleased with themselves that he never did.  I was pretty pleased with them as well!  They tried a slightly different approach, giving him less gases and more melds, and kept him on an EEG throughout the procedure to ensure he was completely asleep.  It worked!  Again I am so thankful for a team so persistent and motivated to give my son the easiest most peaceful surgical experience possible.  They are amazing.

Jacob soon wanted to play something, and look at his Batman sticker book, so he spent some time on that as we waited for a room. Other than an episode of severe pain requiring him to get some Morphine, he was calm and comfortable in PACU.

Once our room for the night was ready, we were moved to the HEM-ONC floor, to the team we who follows the IR kids.  We were excited that this weekend's attending on the floor was the Hem-Oc specialist who works in the Vascular Anomalies Center and handles all of the cases of BRBNS requiring the drug Sirolimus.  We met with him for the 2nd time back in March if you remember, and he was full of information for us, on all of the newest findings with this drug, and with BRBNS.  He is awesome.  Immediately after getting in our room, we got a special delivery! Jacob got a stuffed toy and balloons from his best friend Cole Smith, son of my life long friend Jackie (Money) Smith.  That was so sweet and a nice surprise for Jacob.

After a bit, we were able to talk Jake into getting up and walking to the playroom.  He wasn't too sure about this idea, but it always does him good to get up and moving, so we persisted and up he got.  As we thought, he perked up in the playroom, and even played a little air hockey.

It was nice to see a real smile, and though he didn't last long, we had a good time playing.  He ate a good (albeit late) dinner, and watched a movie.  We slept surprisingly well, only waking a few times during the night, and by morning, he was looking much better.

I felt confident that he didn't need any stronger narcotics throughout the night, and kept his food down, so we were chomping at the bit to go.  They actually rounded early, and we got the green light to leave.  After another quick game of air hockey while they got our paperwork together, we were on our way.

As much as we love it and are thankful for it, we were happy to say goodbye to BCH for this round.  It was a beautiful day, and we all needed some fresh air, so we set out on foot for the Yawkey house.

The previous day and night caught up with all of us, so we took a long nap after getting home.  We all felt better after waking up, and the Yawkey house gave us free tickets to the movie theater close by, so we decided that would be a good low key outing for the evening.  It is a really nice theater with the reclining seats, so I felt good that Jacob could lie back and be comfortable to watch a movie.  The Lego Ninjago movie just came out, so it was perfect.  We had a great time.

We still have until Monday night before we return home, so will try to keep ourselves occupied for the next couple days.  Thank you so much to all who called, texted, left messages, and comments.  Such an encouragement.  And thank you again so much for all who held thought or prayer for us this week. Please continue to pray for Jacob as he recovers.  Much love to all of you, from half of the Casteel's in Boston.

Thursday, October 5, 2017

Day 2...and Hope.

So today was our first visit back to the hospital.  Our first appointment wasn't until 1130, so we got to sleep in a bit and have a relaxed morning, much welcome after yesterday.  We made the quick walk to the hospital, and made our way to pre-op, our first stop.

This was pretty low key and routine at this point, vitals and an exam, and a chat with the anesthesiologist, in regards to his normal response to anesthesia.  I am always amazed at how thoroughly they have reviewed every one of his past procedures, not missing the slightest thing.  They want nothing but the smoothest, easiest experience for him, and search for ways each time to improve his response to anesthesia and his recovery.  After discussing that, and paying a visit to the admitting office for the paperwork, we were cut loose with our instructions for the morning.  

Next stop was to Jacob's main physician, the interventional radiologist who has performed all of his sclerotherapy procedures in Boston and who will also be doing tomorrow's sclero.  He is always so thorough and kind, and explains this complex condition and the procedure so well.  He did a quick ultrasound there in the office, and showed us several of the open "channels" or lesions with active blood flow in Jacob's back that he can treat tomorrow.  He did show us areas of scar tissue as well.  With an ultrasound you cannot see much past the ribs, but he is hoping that those channels are still closed and that he won't have to do much work in Jacob's chest.  We hope so as well, as the recovery is much better if he doesn't have to treat that area. We did discuss the option of resection, but he still feels that the area is stable, with not too dangerous growth, so he thinks we can avoid that for now.  He also talked with our orthopedic specialist about the curvature and rotation of Jacob's spine, which is the main factor that would drive the need for more aggressive treatment.  They both feel that his spine looks the same as in March, when they compared the x-rays from then and now.  I understand that its no better, but no worse is good news.  That means that the treatment in March was successful in taking pressure off the spine and keeping the curvature the same, which is a level we can live with. It is hard for me, that curing this is not an option, and our physician reinterated that (albeit unintentionally) today, when he emphasized that all we can do is try to control the symptoms, or collateral damage from these lesions.  But I still am thankful for the options we have, and for this team dedicated to keeping my boy healthy and strong.  We all were in agreement that our current path is still the right one, and that what we are doing is keeping him well, so we will continue.  Our doctor said we will see how it goes tomorrow, but hopefullly this will buy him some more time before we have to look at more treatment.  We signed our consents, and headed out, agreeing to be back at 0630 in the morning. To the immediate right of the hospital is Harvard Medical School, which makes a nice photo op on our way to the subway. 

We took the T and headed back downtown to the New England Aquarium, a much anticipated trip for Jacob.  We were thankful for the Yawkey House which generously gave us the tickets, so Jacob could have some fun before his surgery.  We made it in time for the penguin feeding, and the diver show (Jacob's favorite).

He loved the petting tank as well. It was the least crowded we have ever seen it, so we really had a nice relaxing time. 

After that we took a quick walk through Fanueil Hall, did a little shopping at the Quincy Market, and headed towards the North End.  We were hoping for a smaller than usual line (its normally out the door and into the street), at Mike's Pastry.  The line was smallest we've ever seen! So we got some  cannolis and gelato, and ate them in the courtyard in front of the Old North Church (The church that  hung the lantern to warn the British were coming, and sent Paul Revere on his ride during the Revolutionary War).

We stopped one more time at the edge of the North End at a little greenway for a breath.  It was a beautiful spot and a beautiful evening.  

I had a lot of anxiety today, and in the previous weeks and months.  As always I am thankful for this place.  This city, its people, the hospital, and all who provide care there.  Tomorrow will be scary and hard and stressful.  But I will continue to cling to hope and light.  A dear friend gave me a bracelet of the moon just before I left.  You know Jacob has a thing for the moon.  On the back of the card attached to this bracelet, it said, "The moon is the friend of the night."  It is so fitting, as so often I feel enveloped in night fighting Jacob's condition.  I think that's why I had such a hard time turning my mind to this trip...for months we had been living blissfully in the light of day.  I didn't think about his condition.  I watched him run and play, swim and swing, and ride his bike all over our little 12 acres of paradise on the mountain.  I wanted to forget about the night, and the darkness that comes with it, that many times overcomes me.  But how is it, that when I fear the night, that I forget about the moon...this thing that so enamors my son, holds so much meaning for me.  That lights in the dark, is friend of the night.  That light is hope to me.  It will always look like hope.  There isn't a time I look up, or look out from the helicopter at work, see that moon, and not remember to hold onto hope. I have worn that bracelet since we left.  And in case it gets too dark, and I forget to see the hope it holds, I wear the other one as well, which my brother, Mitch gave me 3 years as a reminder to not let go of hope that sustains.  

Please pray tomorrow, my friends.  Surgery is at 8am, pray for peaceful hearts, and that my little boy won't be scared.  Pray for all who will touch and care for him, for clear eyes, steady hands, and sure minds for each one.  Pray specifically for his pain to be minimal. Pray for David and I as we walk beside him.  Pray the moon will shine on us tomorrow, lighting any darkness, with the hope of day soon returning.  

Made it!

Yesterday was a long day, but we made it!  We had an early morning scramble getting everyone where they needed to be and getting to the airport on time, but we somehow got there.

Both flights went smoothly and we arrived in Boston around 1.  Jacob was great on the planes, and kept entertained thanks to our sweet family.  David's cousin Chad Dickey and his sweet wife, Hollie gave us something special back in July.  Their daughter Emily had a birthday, and in lieu of gifts at her party, they usually ask friends to bring something for a specific cause dear to their heart.  This year, they wanted to get a goody bag together for Jacob's next trip to Boston.  So they gave Jacob this awesome Batman backpack filled with goodies for his trip.  It had coloring books, sketch pads, stickers, toys, and snacks...all things that Jake loves.  We hadn't let him touch this bag since receiving it in July, so he was so excited to finally get to look and see the surprises it held, and play with everything.  Thank you so much, Chad, Hollye, and Emily!

We got our luggage and headed across town to the Yawkey Family Inn, the patient and family housing for Boston Children's Hospital.  We originally were told that we would be staying at one of the other family housing locations, and was pleasantly surprised wen the night before we left, they called and told us our reservation had been moved to the Yawkey.  It is where we have stayed every trip so far, and is familiar, and like a 2nd home, so we were excited to be back where we are used to being home base up here.  Jacob was excited to be back at the Yawkey too, and said hello to his old friend...

After settling in, we headed out to find some food, and since the day was so beautiful, we decided to head back downtown and go to the Boston Public Garden and the adjacent Boston Common.  The Public Garden was first and is possibly my favorite place in the city.

Jacob enjoyed all of the wildlife, as there were still many geese and ducks everywhere, and probably over 100 squirrels running around.  And of course no trip would be complete without seeing the duckling statues.

It was a beautiful day, and we enjoyed this outing thoroughly.

We crossed the Garden and went into the commons to let Jacob run off some steam at the tadpole playground, which he loved.  And David and I got to sit back and relax a bit.

After leaving downtown, we headed back towards our home away from home, and after a quick grocery run, we settled in for the night.  It was a good first day, though we were exhausted by the end of it.  According to David's Fitbit, we walked 9 miles! Jacob handled it like a champ and we all slept well.  This morning holds appointments, and then we'll play the rest of the day.   Will update later as I'm able.