Post-Op Day 5

Today started early with Jake complaining of pain around 3:30.  After a little medicine he joined us in our bed laying on Daddy until 6:30 when Olivia got up.  All three kids came downstairs to eat breakfast together and it was a normal start to the day with everyone happy and playing.  Jake went back to school today and Luke guarded his brother from everyone letting them know they can't touch his brother, he has a hurt arm.  The medicine made Jake a little chatty and he was enjoying his first day back.  Jake was told by mommy that at any point if he wanted to go home he could but he was content to be back at school with his friends and stayed the whole day including his after school cooking class.  Unfortunately, Jake asked multiple times today about whether we would be using that tool again on his thumb.   As parents its very tough as we don't want to deceive Jake and be dishonest but we also don't want him to worry.   We assured him we weren't doing it yet but we would at some point later.   Later came, which was after Jake went to sleep and it was rough.  We had to disrupt an angelic looking kid fast asleep with the distractor tool to continue to lengthen his thumb.  The plan was to do this at night where Jake wouldn't know what we were doing and our hopes were that he would sleep through it.   Quickly, we turned the tool a full 360 degree rotation and Jake didn't even stir.  Right as we finished, Jake woke up crying hysterically complaining of pain.  It is torture to feel like you are inflicting pain on your child and we felt helpless watching him cry.  We each laid with Jake to comfort him and help him return to sleep.  It took both of us but he is back sleeping which is a huge relief.  How we continue this each day, we aren't sure as it emotionally is tough to endure. Only the hope that somehow this will be less painful with each passing day will help but it truly is something we will dread having to do each day.   We hope Jake can rest remaining in his bed all night but we have a feeling we will see him in the wee hours.

Post-Op Day 4

Today began at 4am with Jake crying out for us that his arm was hurting him.  We gave him a little food with his meds so he wouldn't get sick.  Jake climbed into bed with us for a couple of hours till Luke and Olivia woke up.  Everything started out like a typical morning in the household until it was time to turn his distractor 1MM or a full clockwise rotation.  Today was one of the more painful emotional moments as it really seemed to hurt him and Jake cried for the next hour.  It was crushing to see our little boy in pain especially when he was doing completely fine otherwise.  We knew the spacing is necessary for the second step of his surgery but to see the effect on him makes you just want to say forget it.  We don't want Jake to look at us like we are hurting him without his complete understanding of why and the need for it.  Finally, Jake was able to calm down and enjoy the rest of his day but we were certainly scarred from it.  Tonight before bed, Jake asked if Daddy was going to use that tool again.  And then commented that he never wanted us to do that again.  To hear Jake say that was devastating knowing that we have to do this every day for the next 30 days.  We expect a full fight on our hands tomorrow as we know he will associate pain with the tool.  All we can hope for that with each passing day, he has less pain and we can turn it without him feeling immense pain.    We are going to try it when he is sleeping tomorrow in hopes that in the two seconds it takes he may not wake up or will wake up and it will already be over.  There is no good option but as hard as it is we will push on with the end goal in mind.

Home Sweet Home

Off only a couple hours sleep, it was time to get up and start the day.  The only thing fueling us besides caffeine was seeing Olivia and Luke for the first time since Tuesday morning.  Jake had a mixed morning at first vacillating between his normal self and a slightly more agitated one.  The latter has been the sign when his pain medicine is needed.  One tough moment to deal with when Jake just asked if he could take it off pointing to his right arm.  The sad face was tough to take but thankfully once Jake took his morning dose, he was very happy and wonder if the combination of being home and being around his siblings did the trick.  We had to adjust his splint a bit so we could actually maneuver the spacing tool into the bolt on his distractor.  The bolt was turned a full rotation as specified and it was hard to know whether it really hurt Jake or he just didn't want us messing with his hand.  Tough to do but hopefully by tomorrow we will have the reassurance either away and be able to be confident that we are doing what has been asked of us correctly.  Yes, a clockwise turn isn't that hard to understand but with what is at stake, we are still nervous that we are performing our task.  By mid afternoon, Jake was playing around the house and seemed in good spirits which was quite the relief.  A visit from Papa, Buba and Adam also lifted Jake's spirits and he was in normal spirits happy to be entertaining and playing.  An additional visit from the Lamberts found Jake trying to run, yell and dance around. The only real tricky part of the day was bath time.  Let's just say our ad hoc trash bag to cover his splint and bandages wasn't the most sophisticated option but it kept him dry while in the bath. Jake went down to bed like normal and we hope he will sleep a full night tonight without issue.  Positive steps for the tough little kid.  Jake always amazes us with his resiliency and refusal to let all of his medical procedures stand in the way of his happy soul.

Robo-Thumb, Smiles, & Jake's Store

Discharge Day

Jake woke up on Friday and he was doing good smiling and asking to be held.  We were hoping to get of the hospital early so we could take Jake out in the fresh Boston air.  A few of the Dr.'s came by and after a standard couple hour delay we were given our prescriptions, instructions and sent on our way.  Interesting enough right when we were trying to change Jake he grew irritable and didn't want to leave.  We have noticed a subtle warning sign of the pain meds wearing off and that being a change in Jake's demeanor with slight irritability.  We were able to convince Jake that putting on his clothes meant we could actual leave the hospital for good and that seemed to do the trick.  Right before we left, Sam was stopped and had a bizarre conversation with an Amish woman was pushing her baby on the floor and stopped to greet Sam.  Sam was even invited to come for a visit but maybe next time.   Always a liberating feeling walking through the automatic doors and onto Longwood St.   We decided to take Jake to lunch and walk around Newbury Street which has a ton of shops and restaurants.  The rest of the day was pretty smooth and before long we realized it was time to head to the airport for homecoming.  Then the fun started....

We were quite the sight with Jake's giant splint on his arm and all of our baggage.  TSA had the opportunity to earn their keep as they pounced on us.  A vitamin water we forgot was in the bag, a Ginger Ale for Jake's stomach, two vials of liquid medicine.  They broke out all of these special tests to ensure that everything was safe but to their defense were very nice in doing so.  They even ran some tool over Jake's splint which of course was rendered safe.  We didn't want Jake to run through the detector as he has some new metal that we can't remove.

Our flight which was scheduled to depart at 6:35 but had been changed to 7:45 a couple weeks prior to our trip.  Then the announcement came....Our plan which had been sitting at the gate making me feel relieved was rendered a mechanical failure.   A new plane to be deployed and a new departure time of 9:40.  UGH 2 hour delay.  We were already scheduled to land late at 11pm and now looking at 1am.   Taking our exhaustive week in stride, there was nothing we could do and as long as Jake was okay we would get through this exclamation point of a tough week.   Jake was pretty happy sitting by the window watching the planes taking off and all of the different workers and baggage vehicles in operation.   It reminds you that kids are precious especially when you can watch them be entertained by simpler things out of life such as the inner workings of the airport.   Jake kept shrieking in delight watching and it was good to see him ignore his arm in exchange for watching this show.

The plane ride was pretty uneventful with all of us dipping in and out of sleep as best we could.  Finally we landed and after picking up a gate checked stroller broken by American Airlines we got our bags and headed home.      We got home last night at 2am which was insane but putting Jake down to sleep without any major issues was way more welcome than any loss of sleep we were having.  In summation, as we closed our eyes for a couple hours of sleep, we can just say we were both physically and emotionally exhaustive and hope Jake continues to be resilient and can withstand our adjustments we must make to his thumb.

Day After

Jake spent a lot of the night throwing up struggling with morphine. After meeting with the Dr, we tried a few different meds and by mid-day jake turned a corner and wanted to eat. Starting slowly with crackers but working his way towards a banana and ultimately grill cheese with fries. Great to see him eat again. A team of drs came through and it's good to knowing the teaching hospital has Harvard Med students, makes you feel like you are in good hands all the way around. OT came by and made Jake a splint which agitated him a bit but now his set. We spent most of the day laying in bed with Jake and got our first smile and even giggle. By early evening, I was doing laps around the floor with Jake in his stroller. It was good to see he wanted out of bed. Hopefully his pain won't worsen and he will have a good night allowing us to discharge tomorrow am. Jake wants to leave the hospital and I don't blame him but not before we get the seal of approval and more importantly a shirt that can fit over his splint.

Surgery Day

Well today was quite the long day but we have gotten through it. We reported to Children's Hospital at 10:30 for Jake's pre-op and everything went smoothly but then the waiting game started for what was a scheduled 12:30 surgery time. At first, passing the time was smooth as Jake wasn't complaining about the pre-surgery fast and was running around and laughing. Interesting enough, a show was put on for patients by a school choir playing bells. Jake watched intently and then was even more enthralled by a few clowns that came by and played with Jake. Some Galaga and Ms. PacMan also helped further accentuated by the arrival of Jake's Aunt Stacey. By 1, we started to get a little nervous and were promptly told it would be at least another hour. We were concerned for Jake especially due to the lack of food but he was a trooper. We spoke with the Dr.'s and it was nice to see Dr. Upton four years later from the time he gave Jake complete hands. We reviewed his surgical plan and basically they install a distractor into Jake's hand which has four pins inserted into his thumb and hand. We will manually help space and grow Jake's thumb by turning the screw with a special wrench. The end goal being 30 mm that will provide the space for his bone graft surgery which is part two in a month. Yes we get to come back here and do this again. I brought Jake into the operating room and even though this is his eighth surgery, it is never easy to watch your son be put to sleep while you try to calm him. 30 seconds feels like an eternity but a necessary step. We spent the next four hours anxiously waiting with Stacey to see the Dr and Jakey once again. Dr. Upton finally came out and discussed the surgery with us. He was pleased with everything they were able to perform and is confident his thumb will come out longer and straighter helping his hand function. They were even able to remove some of the skin grafts from the the other fingers. Dr. Upton is a perfectionist and I think he looks at Jake's fingers as a work of art and always wants to fine-tune. We were handed a metal stretch tool for post-op care, ugh not sure we are ready for that aspect. Then it was time to see Jake in post-op recovery. He was agitated and disorientated which we have come to expect. Always tough to see him like that but having his mom climb in bed with him worked its magic. Jake has been sleeping since and is sleeping off a tough day. Jake is one tough cookie and each ime we go through this is a reminder of his beautiful soul as none of this has embittered him. He takes it in stride and always comes into the surgeries laughing and smiling. Our golden rule after surgery is get to the smile. Once we get the first smile we know our Jakey is back and ok. We root for a peaceful night for our little angel and hope the pain will be bearable tomorrow.

Boston

Today was our travel day. After dropping Luke and Olivia off at school and bidding them goodbye, we headed to the airport with Jake. Jake was very excited about the trip and enjoyed some people watching at LAX before takeoff. Jake was great on the plane and was keeping busy with a combo of movies, games and coloring. A true joy on the plane and as usual he showed off his big smile and bubbly personality. A quick dinner and we are going to bed close to midnight. Hopefully the time difference and late bedtime will help us with tomorrow as jake can't eat before his surgery at 12:30. He's running around the hotel room in his very apropos Superman pajamas. A pre-op awaits as well as an Aunt Stacey arrival prior to the procedure. We are grateful for Stacey to come up from NY and lend all of us support and love. Here's to a restful night and a smooth sailing day tomorrow.

Hand Surgery #3

We leave tomorrow for Boston for Jake to have his thumbs straightened.  We started to travel to Boston for Dr. Upton when a local surgeon had first indicated Jake would only have 4 fingers on each hand.   Dr. Upton performed his surgical magic and Jake has 5 fingers on each so we felt it important to maintain the surgical consistency.  Jake faces 2 surgeries separated by 1 month with the end goal to straighten and lengthen the thumb for added function.  Medically, I am told it is an Osteotomy; phlanx of each finger and an application of a multiplane.  This first surgery will install a device into Jake's right hand to help space out and prep the hand for the second step in a month which will add a pin or bone graft to help lengthen the finger once it is straightened.   In all, there will be 4 procedures on both hands between this spring and next fall.   Jake is already a veteran of surgical procedures as most apert children and their families experience.  This will mark his 8th surgical procedure in almost five years of his young life.  These trips are always hard as we have to leave the Luke and Olivia home with loved ones but keeping them on their normal routine is important while we accompany Jake on his continued path.    Jake's surgery will take place Wednesday afternoon and we will update the blog so everyone can be informed of his progress.  We are thankful to all of our friends and family who are lending a hand to allow us to leave town and ensure the best for Jake.

Tubes Part 3

Well before we get to the more important surgery in a couple weeks for Jake's right hand, we now have to get Jake's tubes reinserted this Friday as they fell out. Unfortunately, it will mean 3 times Jake will have to go under in about 6 weeks but his ear Dr. didn't think Jake would be able to fly to Boston and deal with the pain if we didn't quickly get this done. Always a new wrinkle but at least we are used to dealing with the unexpected by now. We will keep you posted to how this procedure goes and then will keep the daily log of the Boston trips that begin in a couple week.