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June
10
2019

Bye!

After getting discharged, we made it as far as the car when Glory peed out of her diaper. We’ll get home sometime!!  Thanks for all your love and support! Xoxo 

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June
7
2019

Friday

Hello! I’m sitting with Hans in the PICU. He’s cooing at YouTube Kids videos and singing along. His night nurse said that he had a great night.

Hans was weaned off of his sedative over the last 24 hours. It’s nice to hear him laugh and to see that he can cope with his cast without being knocked out. He still has an epidural controlling his surgery pain. Today they will probably pull that, too. Once they feel he’s stable, we’ll move to the regular floor and start the process of calibrating his pain meds and making sure we’re equipped to care for him at home: cast care, safe transferring, new wheelchair and car seat, diapering etc.

I’m very thankful Hans’s doctors added a PICU stay to get him through the first few days post surgery. Yesterday he was pretty out of sorts and it is so hard to watch him cry and not know how to help. 

Glory’s been coming by in the afternoons. She gives Hans a huge goodnight kiss when she leaves to sleep at my folks’ but she’s otherwise tentative about hanging out in his room. It’s a pretty overwhelming medical scene with tubes and beeps and nurses everywhere. Gillette has amazing services for siblings; the other night they had a dog show, last night was movie night, and she gets stickers and stuffed animals everywhere she turns. Still, I know she has to be tougher this week than any of us would choose for her. Send a prayer her way, if you’re the praying type. 

Thanks again for all your love and well wishes! Hans is so happy when I tell him about all the people thinking about him. We’ll be in touch about how the day unfolds. Xo 






June
5
2019

the morning after

Good morning, thank you all for your love and support yesterday. And thanks to our families for taking care of Glory and our puppy, Twyla.

Since Hans is being sedated, his night nurse encouraged us to leave and get a good night of sleep, so we did. Hans did well through the night. Even though Hans is pretty out of it, he’s still reassuringly himself - when he’s awake, he smiles, sings, yells, demands a different Wiggles song.

It sounds like the doctors have decided to keep him in intensive care through the end of the week to provide maximum pain relief during the toughest days of recovery. As many of you know, Hans’s baseline already involves quite a bit of pain and upset so I’m glad his team is taking this approach. The goal is to keep him comfortable.

I doubt there will be much to report from here on out but I’ll post some pics, any updates and let y’all know when we’re heading home. Thanks and love! 

June
4
2019

great news

They’re finishing up with Hans. After doing xrays of how Hans’s repositioned leg bones fit into his pelvis, the surgeon decided he liked the way it looked enough to opt out of working on Hans’s pelvis. 

This means Hans’s pain will be way better during recovery, because I guess cutting into the pelvis and stuff - sorry medical people - around it would have introduced another level of pain and possible complications. I’m so thankful we won’t have to worry about that! 

Why the course change? Hans’s surgeon explained this morning that it was possible that Hans’s pelvis is fine for now, and that his muscles - sometimes tight, sometimes not, making an unstable situation for the hip socket - could be the culprit for the current dislocation. 

They still had to break Hans’s bones to mechanically overcome the power of his little but mighty muscles that obviously don’t pull in typical ways. For now, he explained, Hans still has youth on his side. The hope is that by putting Hans’s leg bones back in his hip sockets, the joints will grow in tandem on their own, without needing the help of other interventions. We already knew that Hans will likely need another surgery of this kind in a few years. At that point the surgeon might need to help Hans’s hip shape around the leg bone but for now, he’s good. Yea!

Right now the surgical team is working on his spica cast, a full body cast that he will wear for at least six weeks. Then he will be transferred to intensive care for the night where they will be able to keep him sedated to manage Hans’s pain. 

We just met briefly with the surgeon and he said that one of Hans’s leg joints had clearly been rocking completely in and out of the hip, which would explain how he has been kicking his leg up to his face lately! At least he won’t be able to do that anymore now! Oh, Hans, we love you little buddy. He’s been such a fighter since day one. I can’t wait to give him a big smooch. 

June
4
2019

a good morning

Hi all, thank you for the love and well wishes! Hans was peaceful all through pre-op. They took him back at around 11 AM. I actually got to go with him to the OR to sing him a little song as he drifted off. It’ll take awhile for anasthesia to get him prepped; surgery will probably begin around noon. Xo 

June
3
2019

The nitty gritty, for those who are curious

Basically they're gonna break Hans's femurs, maybe shave away at his hip sockets and then possibly tighten up the hip joint. Below is the information a pre-op nurse took me through describing the procedures planned for Hans's surgery. Gillette's website has information for many of its more common surgical procedures, but since these are more specialized, you'll have to google for further information.
  1. Bilateral hip arthrograms
    • Run dye into his hip to image it to see where the joint fits
  2. Possible bilateral pelvic osteotomies
    • Depending on what the images show, the surgeons may decide to remove a piece of pelvic bone to change its alignment
  3. Bilateral Proximal Femeral Varus Derotational Osteotomies
    • Cut both femurs
  4. Bilateral Capsulorrhaphies
    • Repair hip joints if they've torn away; suture of joint capsule (that's the pelvic) to prevent future dislocations