Post-op, Day 2

Otis had a fairly restful Monday night in the ICU following surgery. When he first arrived in his ICU room out of recovery that afternoon, he put up quite a fight trying to sit up. He thankfully began to relax after the administration of his first dose of post-surgery Valium, which he will be getting regularly to serve the dual purpose of preventing painful muscle spasms and keeping some of his bigger seizure activity at bay (fingers crossed). We think that initial fight may have had to do with the anesthesia wearing off. I'm sure this whole experience must be quite bewildering to him. 

He woke up Tuesday morning (post-op, day 1) with some reassuring smiles, and opened his eyes and looked around for really the first time since surgery. The pain and discomfort of being immobilized found him shortly after that, so the rest of the day was mostly spent keeping up with his meds (Tylenol, Toradol--an NSAID like ibuprofen for inflammation, Valium, and low dose Oxycodone) and trying to keep him comfortable. His epidural was kept on all through the day yesterday for continued pain control, and the Foley catheter that was used during surgery was kept in to prevent urinary retention that can happen with an epidural. This also kept us from having to do any diaper changes right away. The nutrition team got him going with g-tube feeds mid-day yesterday, while IV fluids were gradually discontinued. Otis was moved from the ICU to the regular pediatric floor mid-day, he was able to ditch the oxygen cannula as his O2 sats remained steadily high without it, and he was finally able to settle in and relax by late afternoon and was able to get another mostly restful night of sleep. 

This morning, post-op day 2, began with the anesthesia team turning off his epidural to see how he would do on oral (g-tube) and IV pain medications only. It wasn't long before the pain found him again, and his orthopedic surgeon quickly bumped up his Oxycodone dose, which had previously been at half strength while the epidural was active. We were assured that while really rough for Otis to endure--and for us to watch him endure--and that this part of the process is to be expected. If we find that the current regimen is just not enough at this point to keep his pain under a reasonable amount of control, the next step will be to add a transdermal clonidine patch for pain. The goal is to work our way toward a plan that we will be able to continue at home, as we will not have access to IV medication options. The increase in his Oxy today seems to have brought a little bit of, if not total, relief, and he has had some decent periods of rest. 

Our next big goal is to get his bowels moving! The combination of narcotics and immobilization is counter to bowel motility, so we're doing everything we can--continuous g-tube feeds that contain plenty of fluids, Miralax, suppositories, belly massage--to try to get him going. Getting his bowels moving will also help to keep his seizure threshold up. We've thankfully managed to avoid any big seizures so far (likely due to the Valium) and are still sort of half holding our breath in anticipation of how that first inevitable tonic or tonic-clonic seizure might impact his newly reconstructed hips. Our hope is that the immobilizers--a big abduction wedge pillow combined with full leg-length immobilizers to keep his knees from flexing--will hold strong while also not causing any injury to him if his body isn't able to move the way it wants to during a strong seizure. But for now, seizures seem to be well controlled. 

Ryan went home for a bit today to receive our temporary equipment from the home medical supply company, and we are now equipped with a hospital bed and Hoyer lift with the appropriate spreader bars and long sling that will allow Otis to remain supine in his immobilizers while being lifted. Thanks to his newly widened bedroom doorway, everything was able to fit in his bedroom once Otis's regular bed was dismantled. We will likely move a recliner in next to the hospital bed so there will be a place to sleep near him on the four nights a week we are currently without a private duty nurse. We are keeping our fingers crossed that our home health agency will be able to staff those open shifts very soon, as Otis will require cares, including medication administration and repositioning, frequently around the clock. 

Tomorrow morning, after allowing a dose of his pain medications to kick in, Ryan and I will be shown how to transfer Otis, both as a two person lift, and using the Hoyer. We are hoping we can learn to do this without too much disruption, but it is something we've got to master before we can take this show on the road. Another thing we'll need to master is the art of the immobilized diaper change--oof!

The final piece of temporary equipment to arrive will be a reclining wheelchair that will support Otis fully, or nearly fully, supine, as his current custom wheelchair only allows him to sit at ninety degrees. His restrictions for the next six weeks are actually thirty degrees--we can either have his legs tilted up at thirty degrees or his upper body propped up at thirty degrees--while he heals. This wheelchair will be delivered to the hospital either tomorrow or Friday so that we can transport him home in our wheelchair accessible minivan, Harold. 

We are so fortunate to have so many wonderful people in our lives, holding us throughout all of this through your thoughts and prayers and kindnesses. We are just so grateful for all of you, and we feel so loved and supported and uplifted. This is a really challenging time for us, but we still feel so lucky for all of the goodness and abundance in our lives. Our family, our friends, Otis's school community and homecare staff, his incredible orthopedic surgeon and orthopedic team, and all of the incredible nurses who continue to help us while we're inpatient. I mean, come on...nurses are truly the biggest superheroes of all. 

Otis with his beautiful new quilt made by his Grandma Donna, and his new weighted stuffie from our old friend Nurse Steven--his previous home health private duty nurse who now works here at Children's!

Yesterday was my birthday, and by hanging this banner in O's hospital rooms, Ryan made sure I didn't forget it! David and Donna brought some yummy cake, and we were able to take a little time to celebrate in the afternoon.