Part Two | Max’s Polydactyly Reconstruction

 
Max and I went to bed early Thursday night in preparation for his surgery on Friday. Our nursing cut off was 3:30 am so I set my alarm for 3:15 hoping that he’d get a solid noshing session in before the milk bar closed. True to form, he did.
 
By 4:15 I was in the shower and by 4:45 Dominic, Bubs and I were rolling through the Starbucks drive-thru and ready to head north to the hospital. Max transitioned from snoozing in bed to snoozing in the car and woke right around 6 am as we pulled up to the hospital’s valet service. Because obviously after seeing the pre-insurance bill for our day’s event ($16,000) there was no way we would be missing out on the “free” valet parking.
 
We checked in and made our way to the pediatric surgery floor at Mary Bridge Children’s Hospital. There, we met our sweet nurse, Shannon, who resembled the fairy godmother. Max had a little welcome sign on the door with his age. That obviously corresponded to the size gown they laid out before our arrival. But as soon as Shannon saw Max she quickly snatched it up and said she’d find a big boy gown. That’s right, Max hasn’t worn 12 month size for quite a few months! 
 
 
Shannon worked through Max’s medical chart and took all his vitals. Only interesting one was his weigh – 28 pounds, 6 ounces at 1 year and 1 week! My most favorite part was that she said, “I greatly respect your decision” when I briefly explained our alternative immunization plan. Yep, pretty much bonded us for life because I’ve never had a mainstream medical professional say anything along those lines!
 
 
We had about an hour to occupy Max after that, prior to surgery time. He bopped around the room, turned his bed into a slide and played with some new toys. Beforehand I was worried he’d be after me for mama milk, but the different environment distracted him enough to keep him from beating my chest … which is how he currently communicates that he wants milk ASAP. We’re working on the sign for milk, but shirt pulling and Tarzan beatings seem to be more his style these days.
 
 
Our anesthesiologist and surgeon popped in for a visit around 7:45 to make sure we didn’t have any new questions. Dr. Silas marked his left thumb as to not forget where surgery was happening and we opted for a blue cast. White was obviously out of the question and we told Jemma that we’d save purple for her in case she ever gets a “hard bandage”. Only other options were black and neon green – so, blue it was. Although, Katie was totally pulling for me to order one of these.
 
A new nurse came in to meet Max. The one who would carry him back to surgery. She played and visited with Max, snuggled his blanket around him and then scooped him up. He didn’t cry as we walked opposite ways in the hallway. Oddly, I didn’t either. I guess I knew he was in good hands between Jesus and his surgery team. Everyone at Mary Bridge is seriously fabulous.
 
Dominic and I read and visited during the hour and twenty minute surgery. Oh, and starred at the surgery progress screen. Once it turned from “IN OR” to “CLOSING” we knew they were stitching up his incision. That meant we got to transition to a consult room to meet with Dr. Silas for a post-op report. She was very pleased with how everything went. Yay! There were a few unknowns about joint structure before getting in there, but luckily Max had two fully formed base joints just connected by cartilage so she only had to use a small knife to severe there. Since it was fully formed, there was a lot less reconstruction needed. She felt that some spots may be stiff or tight, but that he would stretch them out in time. So, all in all, a picture perfect surgery!
 
While he was laying flat during surgery she did mention that one side of his body looked slightly larger than the other – especially his face and femur. Apparently this is indicative of a genetic disorder/syndrome called hemihypertrophy (or hemihyperplasia) that we’ll be looking in to more. It can mean some pretty scary stuff (like a higher likelihood of a childhood tumor), but right now we’re just taking things one step at a time. Next step will be to meet with Max’s pediatrician and having an abdominal ultrasound. Possibly meet with a geneticist too. Not at all the conversation we thought we’d be having at the end of his thumb surgery, but if this process has given us more information to better take care of Max it is well worth it. I’m feeling pretty worried and anxious, but right now everything we’ll be doing is just a preventative measure. We covet your prayers – so please, send them heavenward! It has been a really bittersweet two days knowing we’ve crossed the bridge of his surgery, but may be encountered some other medical things in the near future.
 
After our good/bad news we packed up to meet Max in the PACU. Poor guy was so disoriented and delirious coming out of anesthesia. He was mad and hurting and giving his tiny nurse a hefty dose of thrashing wiggles. I scooped him up and he nursed right away. He got another dose of pain medicine through his IV, continued nursing and after 10 or 15 minutes finally relaxed and settled in my arms. It felt so good to have my baby back where he belonged.
 
 
From there we moved to our own recovery room. Max took a long nap on me while the nurses kept tabs on his vitals. He had come out of anesthesia with a barky cry, probably a combination of his previous bouts with croup and the breathing tube creating some irritation, so he had had a breathing treatment in the PACU. They wanted to make sure he was managing well on his own before sending us home. Around noon, just 6 hours after we arrived, we were heading out the door on our way home! 
 
 
Friday afternoon and all day today we’ve kept up on his pain medication as they said these first days can be the roughest. Max and I have had some super long and snuggly naps together and we’ve been praying over him for healing – both for his hand and for any other complications we may find if he does indeed have hemihypertrophy. Our God is a big God who can do mighty things. 
 
As I was rocking my sleeping Max this afternoon I felt these words come over me, “Come boldly into My throne room”. I hadn’t recently read them, nor had anyone spoken them to me; but God was most definitely calling me into the safety of His arms. And so I went. With lamentations of worry and heartache, of struggles of Max being my baby when he is truly first and foremost the Lord’s child, of His healing touch and protection over Max’s whole body today and the days to come, of peace for my anxious mama heart when I feel torn between being angry and scared. These were my shattered thoughts than culminated into a mix of prayers and tears. And ever since, I’ve felt secure knowing they were heard and treasured by my God who is bigger than everything I’m experiencing. I read this devotion tonight and it matches the phrase “Come boldly into My throne room” perfectly. I hope for whatever you’re battling, it comforts you too.
 
Max gets his cast off on the 27th and he’s made it clear he can’t wait. He’s adapting so well, already crawling with a cute little limp and finding his balance while walking. No doubt though, he is definitely frustrated with his new accessory. Jemma is anxious for the 27th too – she has already asked to go swimming and when I told her we had to wait because of Max’s arm she insisted that I just take his cast off :)
 
 
Thank you all so so so much for all your prayers, thoughts and encouragement over the last few days. It brings a smile to my face whenever I read your comments here or on Facebook or Instagram – you’re all pretty awesome!
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Comments

  1. Ruthy T. says

    oh gretchen what a hard, hard experience! I can't imagine the fears running through your head when you thought you'd be completing one end of a medical journey. I'm praying hard for sweet little Max, for recovery and that he is 100% healthy!

  2. Diana Opong-Parry says

    From one mama to another what a blessing that Dr. Silas shared that info with you. Maybe it's nothing, maybe it's something, but thank goodness you and your family can find out more (when my oldest was only 10 months old she had to have an MRI and a few other tests due to some developmental concerns … thankfully she is now ok).Extra big prayers going out to you from us and our church (the prayer team will pray for healing, guidance & strength) as you and your family journey into the unknown.

  3. Dionna Ford says

    It sounds like you and Max sailed through that surgery – I'm so happy for you!! And of course I'll be holding you in my thoughts for the other part. I know what watching and waiting can be like, Kieran has pectus excavatum, and it will likely require surgery when he is a teen.

  4. ThatMamaGretchen says

    Not creepy at all – super sweet actually! I was just bragging to Dominic about how awesome internet turned real friends are :)

  5. ThatMamaGretchen says

    Surgery with your kids is just scary – there is no other way around it. I can talk myself in circles about trusting them with the experts, but still – the days up to it and the waiting during and then the recovery. It could drive a mama batty! So thankful to have all the love and support from friends like you :) xoxo

  6. ThatMamaGretchen says

    Thank you so much, Diana! I totally agree that it has been a blessing in disguise. I appreciate you sharing with your church's prayer team too :)

Trackbacks

  1. […] As Max’s birthday drew near that peace I prayed for arrived. For many reasons, I knew what to do. I knew I wanted him to stay just as he was the first time I held him – perfectly formed and uniquely his own. But, I knew more that it wasn’t best. As his mama, I knew I had to make the tough decision for him. And so I went about my business advocating for him, being his voice and preparing for surgery. […]

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