Since Surgery

We were ushered into conference room 2 to wait for the 2 doctors who performed Jack’s incredible surgery last friday. We quietly sipped our half off Starbucks drinks with anxious anticipation, looking back and forth like little kids waiting to see what dad brought from his business trip.

They came in and sighed with a smile. It was done! Dr Taghinia lit up a little when he reviewed what they accomplished. The first and third web spaces of each hand were released (thumbs and pinkies). They opened his hand so he now has a palm, and straightened the middle three fingers with pins to allow for good healthy skin growth and prep the fingers for future surgeries. I’m so excited to see his thumb most. I could sort of make out the other fingers… but there was no sign of a thumb!  The Drs said his thumbs are 2.5 centimeters long 🙂 They did say they had some trouble knowing exactly where his toes were but were able to follow the nails pretty good. I know to the passerby it may not have looked like he had nails but he did!  Seth laboriously cut them with a cuticle trimmer, a flash light, and a lot of patience from both of them. Lucy and I would watch (we’re not the patient ones of the family).

The doctor said with a sort of laugh, “His feet are going to need more work in the future…”  Some may not appreciate this lightheartedness… but I love it. The way I see it… if you don’t laugh at the funny things… you just cry… and laughing is more fun. When I was a girl, we would always laugh when my arm started going crazy and I accidentally knocked a cup off the table. I imagine the same for Jack. When his feet are goofy looking, we’ll wiggle our toes in the sand and laugh. That’s all we can do – and we’ll do it together.

We were transferred to the ICU where we got to see him for the first time in all four casts. He looked giant and tiny in the same breath. He apparently “obstructed” after they took the breathing tube out so he had to wear a cpap machine through the night to keep his oxygen level stable. The mask caused his swelling in his eyes to look exaggerated. Nothing was scary though – I think that was a gift from the Lord. The nurses all loved Jack. They all tried to get him to smile which he just stared at them. I ended up requesting that they give him the stronger pain med (oxycodon) every 6-8 hours instead of every 4 because it was making him extremely lethargic and he wasn’t eating or moving. Once we backed off slightly we slowly started seeing a little more of our Jack man in action. He’s now starting to figure out how to move both of his arms and looks like he’ll be rolling around in no time.

The best and most awkward thing was getting to hold him for the first time. It was saturday night. He was really out of it, so he was stiff and awkward with the casts – but his head and arms were also really floppy. It took three of us to get him and the cords and the pillows adjusted on my lap. My legs started going numb but I wasn’t going to move for anything. After hours of feeling helpless I was finally able to hold my baby!  I even got to nurse him again which was a big question mark for us beforehand. Turns out it works just fine!  And since I am breastfeeding I get three meals/day free!  That was an added bonus I wasn’t expecting.

Our night nurse was amazing. Her name was Plum and I instantly loved her. Her face was kind and she reminded me of my older sister. She was quiet but said enough for me to know she would take care of Jack like he was her own baby. She told me to go home and sleep. So I did. I woke up a few times feeling strangely but I had two of the best nights sleep in a long time. Another gift? thank you Lord.  The following day was mothers day. It was relaxing. We knew that nothing was happening that day but hanging out with Jack. No pending MRI was scheduled on Sunday – so we just played. He started smiling again!  And enjoyed peek a boo and reading books and being held. It started feeling like we weren’t going to simply survive the month of casts – but enjoy them. More good news – they were able to schedule the MRI for Monday afternoon at 2:30.

Katie came by for one last visit and it was so nice to have a visitor. I was going to show her the beautiful garden we found the day before… but I forgot as we got to talking 🙂

I finally had my experience of sleeping beside Jack in the chair that turns to a bed. It went better than I expected since Jack had to fast again. We are rooming with a new baby girl who cried a little, but her cry was so little – I am sure the new mom did not think so as she looks like she weathered a storm this morning. I smiled to her in understanding. I am now used to the sleepless nights. She stared blankly at me. Someday she too will understand. We don’t speak the same language so we have to communicate with body language and not words.

This morning (monday) got to me though. I was holding jack as he was crying and not understanding why he couldn’t eat. His monitors kept going off as he was flailing his arms and legs in protest when a large team of doctors came into the room. They told me his MRI was going to be on Tuesday now and he could go ahead and eat. Now it was my turn to protest –

“No,” I said feeling helpless again… “they said it was going to be today.”

“They have different people scheduling every day so they can change their mind” was the residents response.

I felt like someone kicked me in the stomach.

“But I leave on Tuesday!”

“I guess I’ll go plead and beg”

“thank you”.

They left.

Not 10 minutes goes by.

Enters a second team of 6 residents.

“So it looks like Jack is scheduled for an MRI today” the leader says happily as if he doesn’t hear my child screaming. (i can appreciate that they want to accept the fact that he was crying… my advice for professionals is to stop and acknowledge the situation, otherwise the happy face you have either seems fake or forced…neither are preferred)

“But the other team was just here and they said that he would have to go tomorrow” I am on the verge of tears.

“Oh, ok… then I guess he can eat”

I am super frustrated now. Why can’t they communicate? Is how I feel… this is where the breakdown of hospitals works sometimes: the computer main system says one thing while a department says something else – there are 4 groups that have different information and one mom who gets a roller coaster ride of emotion.

“I am leaving on Tuesday and think we should get it done today!”

“You don’t leave until 5:00, you should be out at noon”

not cool…. my experience is that everything in a hospital takes about 2 hours longer than expected. Add to that traffic in Boston and security…

I say, “that makes me nervous”

they leave.

Next comes my nurse. My wonderful nurse with extremely straight and white teeth… She calls MRI. They say that we are on for this afternoon! Whew – but not until later, so he got to eat!  Victory!

– – – Short side story about traffic here in Boston – – –

Saturday night when Plum had Jack we got to go out for dinner. We walked a few blocks to penguin pizza. We had a great chicken and broccoli pizza and it felt good to have fresh air. We were waiting for a table and observing the intersection. Every so often all the traffic lights turn red and it becomes a “pedestrian pandemonium” in that everyone can cross any direction. It is always entertaining to watch people dodge each other and race to the other side. A gentlemen was standing behind us which we didn’t know and he asked if we were students studying traffic patterns!  I instantly felt like a big nerd and shook my head no as I was laughing. He proceeded to explain how that particular intersection was even worse than most because a train runs through the middle of the street and goes the same route that the bus does. We all had a good laugh at the redundancy and were all grateful none of us were driving in the mad traffic.

– – – –

We just got Jack in the stroller. Now that he has eaten and slept, he is happy and we are going to take a walk!  I feel like we’ve come a long way in just three days!

Time to go play! I’ll let you know how the MRI goes and I’ve been working on a picture reel for you all 🙂



Published by: shanninvanderark

A stay at home mom/Occupational Therapist who has two children, one recently diagnosed with Apert Syndrome, a new coffee roasting business, and a whole lotta stories to share on the journey

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