Wednesday, March 15, 2017

Beyond Difficult {Part 2 - SLOB Hip Surgery}

She approached the upcoming surgery like she usually did when something major was going on with her son. She posted an announcement/prayer request on his Facebook Support Page. In doing so she could keep those who wanted to pray for him in the loop as things came up. Many people like to know specifically what to pray for while others are looking for confirmation that their prayers are answered.

It also serves as a source of support for herself when she can read their encouraging comments immediately while things are happening, and it serves as a journal she can reference later when she has more time to process if things are moving at a fast pace.

She figured it would be a run-of-the-mill surgery. She'd post a before picture, a few stressful updates during recovery, and a happy going home picture. She had no idea how wrong she would be.

"...the doc in TX says it's only a matter of time. His opinion was to do another surgery called SLOB that should lock in his hips for a long time. We had planned it for next March which is why I hadn't mentioned it yet, however, it has been bumped up week on Dec 22! We have been scrambling to make all the arrangements, and everything seems miraculously to be falling into place. That doesn't mean I don't have a ton of nauseating anxiety. The first 24 hours are said to be extremely painful. He is scheduled to be inpatient for 4 days after. Please pray for excellent pain management and for my sanity. I've found the hardest part of parenting Austin is listening to him in pain. I'll try to keep everyone updated. It's still a little surreal that this is happening so soon. I'm attaching a link that describes the surgery:…/Innom…/SLOB/slob.html"

That night after they got settled in, they propped him on the couch wearing his brace with a pillow between his legs. He was so funny because he kept kicking his legs until the pillow would land on the floor. Then he would giggle when she had to pick it up and put it back. They played this game for awhile.

The next day she and her husband took him to the pre-op consult with Dr. Yngve. She remembers going over all of his medical issues in detail while Dr. Yngve asked questions and took notes. It took awhile and at the end of the appointment, Dr. Yngve turned to them and with a deadpan look on his face, says "You know he's complicated, right?" They laughed nervously.

They left and returned the next morning for the surgery.

"...a pretty low rate. I'm also seeing short seizure activity. And he hasn't pooped yet probably due to the morphine he needed the first couple days to stay on top of the pain and plus the anesthesia from surgery. So the seizures and vomiting could be caused from not pooping or the vomiting could be caused by seizures... Anyway, the puzzle isn't solved yet. I was kind of hoping we might get discharged today bc I was feeling more confident in my ability to care for him. We meet with Dr. Yngve in the morning, ha, probably in just 3-4 hours from now, for him to remove the numbing "balls" that have been delivering local medication to the hips. So who knows what will happen then anyway. Leave it to my kid to be the complicated case. Always. We had to laugh when in our pre-op appt, Dr. Yngve pauses and says, "You know he's complicated, right?" And we were like, "Oh yeah. We know."
"...were considered. And they made plans to try to figure it out including an abdomen X-ray and making sure his pain meds and muscle relaxers were on schedule. About an hour later we finally got poop 💩 so we could cross one thing off the list. We still didn't restart feeds at that time. So he has currently been off feeds for about 12 hours now. But he is still randomly waking with a short spike of heart rate, then a little cough, and then he tries to vomit. Not sick bc it's so spread out, but could be nauseous from pain. The local numbing "balls" were also removed this morning along with a visit from Yngve. Sounds like at least one more night of stay to see if new regimen of meds will work so we can manage at "home". We are going to try to restart feeds this afternoon with the new pain management regimen. If at first you don't succeed, try, try, again. Oh, and I should mention I put out my S.O.S after my "breakdown" to Patrick and he rushed to the hospital to rescue me. I got a clean shirt, breakfast, and eventually, a four hour nap! He's my hero."
"...all together. I feel like crying only bc of the peace I feel right now. Thank you so much for all the prayers and encouragement these last few days. It's definitely been a lifeline for me to share what's going on and feel like you guys have our backs. Have a great Christmas Eve, everyone. I hope to report even better news tomorrow. 😊 (P.S. There's a chorus of crying babies and children in the background as I write this. Please pray for all these other families caring for their sick kids tonight, and the hospital staff that are working tonight and Christmas Day.)"
There were so many little things here and there that the docs and nurses had to deal with while caring for him that not every little detail made it to the Facebook posts.

One thing she did not record in the posts was that the docs had been concerned that he had low blood sugar levels. He always has fairly low and steady levels being on the ketogenic diet, but his were lower than the usual fasting level so they had given him glucose or something through his IV to raise his blood sugar to his baseline.

Another thing that didn't get recorded was that he had swelled up and become very puffy. She probably didn't mention it because he always has a little edema when hospitalized and on IV's. The hospital staff usually give him some kind of med that eventually makes him pee so that the puffiness goes away. So the next day she didn't worry too much that he still seemed extremely puffy. He was off the IV's, and they had given him another dose of the anti-puffy medicine which resulted in a wet diaper.

Everyone, including herself, was busy anticipating discharge. She sorted and packed all their belongings. Docs came and went with updates, nurses and therapists scurried in and out making sure all the orders, meds, and supplies were ready for the anticipated flight and return home 3 days from then. She was so excited that her family might all be spending Christmas together that night that she tried not to overthink the fact that he was very sleepy and still puffy. She assumed he was sleeping because he wasn't in pain and hadn't had a lot of sleep in the past couple days. Well, at least she hadn't.

The nurse came to give his 2:00 pm meds. They decided to give him everything that was due since who knows how long it might take to get settled back into the rental. She didn't want him to suddenly wake up and be in pain after they had worked so hard to stay on top of it. The nurse gave her a chart of when each med could be given next if needed. His next med could be Tylenol at 6:00 pm.

Her husband arrived and loaded him into his Special Tomato jogging stroller. He just sat there unresponsive with his eyes sealed shut. He asked her if that was ok. She shrugged, and said something like "I guess so or they wouldn't let us discharge, right?"

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