Malachi went down to the pre-surgery area this morning at 6:15am and officially went to the OR about an hour later. His surgery took all afternoon and he was finally taken to recovery around 5pm. He did require a blood transfusion and we will check his levels again in the morning. He is currently in the ICU as he is struggling with pain management and breathing, but he is stable and non-life threatening. He is just having a hard recovery.

The orthopedic surgeon is happy with the correction they were able to achieve in surgery with screws and rods running down his spine and into his pelvis. Malachi’s scoliosis was 130 degree curve, which is very significant, so achieving a change like this one is a really big deal. I can only imagine how much pain he must be in right now.

After the ortho doc finished with hardware plastic surgery was brought in to close the incision. This is a very important part as incision infection is a big concern. He has two drains placed and an incision vac to help promote healing at the surgery site. But the anticipation before surgery was that he would need a lot of plastic work done and possibly even skin grafting, so the fact that they were able to close him up with minimal effort was a praise. It also eliminated the need to go back to the OR with plastic surgery in 3 weeks, although we will have to go to the clinic 1 week post op and 2 weeks post op to have drains removed. That gives us more freedom in planning his shunt repair surgery a little bit more quickly.

They also removed his halo, praise the Lord!! I asked the surgeon if it was safe to say we are done with it forever and he said he wasn’t ready to declare that victory yet. The holes where the screws were are really hard to look at, but I am told they will heal quickly. Honestly he looks pretty rough right now all over. He is extremely swollen from surgery and looks like he has been in a car accident. His body has been through a whole lot, and he is very sensitive to pain right now.

Even though surgery is finished there are several complications that we will be watching for. And there is always a chance that equipment could fail in the years to come so he will continue to need monitoring. And respiratory and GI issues are continually on the radar.

We will take his healing a day at a time and stay as long as needed. Jake is on spring break next week which is helpful! Having an end of the work week surgery isn’t ideal; most of the regular specialists staff has weekends off so we are limited to just a handful of specialists to call and no physical therapists but we are praying for a restful weekend for Malachi.

I haven’t been fully transparent about some of the harder parts of these past few weeks, frankly because I am just not ready to talk about them. But one of the harder parts hit me last week as Malachi attempted to smile at one of his nurses. His lips curled up on one side in a classic Malachi grin and I watched as the muscles in his cheek shook uncontrollably, clearly weak from not being used and not smiling. I am eager to build those smile muscles back up in his face and see that brightness in his eyes again. I miss his joy so much.

I will likely try to update again on Sunday but will be spending this weekend focused on being present for Malachi’s healing. If he is up for visitors Jake and Levi will make the trip over this weekend! Thank you for lifting him up in prayer today and keep those prayers coming for a complication free recovery.

Sincerely,

Leah