On from Here

As far as all of Joshua’s surgeries have gone, this ranks as one of the easiest recoveries he has ever had. The few hours we have been back at Della’s house CJ, James, and I have all taken much-needed naps, but Joshua has been playing and going strong. We realize that the hardest part of the adjustment to his new permanent device is going to be keeping his activity levels low for the next few weeks until the device site heals properly.

Joshua’s docs are very pleased with how the sacral nerve stimulator has helped him these past few weeks. Essentially, the device helps to clarify the nerve signals between his brain and his bowels, giving him more muscle control and sensation than he has ever had before. Until now, he hasn’t known what it feels like to need to have a bm- he knew only when it hit his skin on the outside. This meant lots of accidents that no medication or enema could entirely fix. That has improved dramatically these past two weeks. But we are still following his bowel management plan to treat his constipation. His constipation/motility might improve over time, but it will likely take 6 months to a year to see any significant improvement in that area. However, the increased sensation and control has allowed our current plan to work predictably and well- a HUGE improvement in our quality of life! If nothing else improves, we still consider this a success and are extremely thankful for this technology!

We now have a medical device card that opts him out of going through metal detectors and full body MRI scans. Hand-held detectors are safe for him, but the walk-thru ones are not; they will hard reset his device and erase its programming. He will also need to avoid playing football and going skydiving (I’m not heartbroken about either of these restrictions.) He will need to wear a specially made hip guard for other athletic activities.

Please pray that:
– We can keep him relatively calm these next few weeks. He’s tired of “not playing” and we are going to need some additional creativity.
– The transition to the new permanent device will be simple. We will turn it on tomorrow afternoon.

Home from the Hospital

Joshua is home from the hospital. He is feeling good, but we need to keep him at a low activity level for three days. For now, he is lying on the couch watching some tv. We are all needing a nap.

In Recovery

Joshua is out of surgery. The doctor was pleased with how he did and his permanent SNS is in place. The Medtronic rep taught us how to use our new fancy remote that controls the device. We are headed back to recovery to see him now.

Joshua in Surgery

I walked back to the surgery room with Joshua. He had fun talking with the nurses and went to sleep with watermelon flavored gas. The surgery should be fairly short.

Greetings from Columbus

We are checked in and waiting for our 10:10 surgery time. Joshua wanted to tell everyone “Hi”.

Next Surgery Info

Joshua’s second surgery is tomorrow at 10:10 in the morning. It should be much shorter than the last one and less invasive. The doctor will disconnect the temporary device and connect the leads from last surgery into the permanent SNS. They will then implant the SNS into the incision they created last surgery. The recovery should be less traumatic.

Today’s appointment with the surgeon was positive. He is pleased with the results so far. There has been amazing improvement in sensation and sphincter muscle control. He even held a bowel movement for about 30 minutes on Sunday while on a hike! The third area that should improve is motility, but the doctor said that often takes 6 months to a year to show significant improvement. As the motility improves, we should be able back off some or all of Joshua’s medicines.

If everything works as well as hoped, Joshua should be able to have a normal diet and be able to maintain bowel control. The only lifestyle issues would be no high impact sports–football, skydiving, etc. He will also need to avoid metal detectors as they interfere with the implant and may even cause it to reset.

I will post updates throughout the day tomorrow. Thanks again to those taking care of stuff for us back home and especially to all those praying.

Weekend Update

We have enjoyed a visit from both of Joshua’s grandparents this weekend. On Thursday, Michelle’s parents arrived. We had dinner and spent the evening making a puzzle Joshua’s Grammy and Grandpa brought him. On Friday, we all went to the zoo. Joshua especially like Dinosaur Island and the carousel.

CJ’s mom arrived Friday night. She brought James with her as well as Joshua’s cousin. There was a joyful reunion and they’ve been having fun ever since.

Two prayer requests:
1. Joshua bumped his bottom on Friday. There was a good bit of pain at first, but he seems fine now.
2. Michelle is sick with what appears to be a 24-hour bug. Pray that she recovers quickly and that no one else gets sick.
Thanks again for all the prayers and well wishes. L

Realistic Expectations

Joshua’s pain reduced significantly over the weekend and regular ibuprofen at nighttime is enough for him now. We are thankful for that, but as he feels better it has become more of a challenge to keep him from running and being super active. We have reduced his ex-lax dosage by more than half. He has had no soiling accidents and gets lots of warning when he needs to go. This is a huge quality of life improvement for him!

Michelle talked with our surgeon’s nurse extensively today. We are set for the insertion of the permanent device one week from today. Once the device is in place it will replace the laxatives for his bowel management. However, we will still need to adjust and readjust programming on the device as he grows, just as we would need to do on the laxatives. The big difference is that the sacral nerve stimulator is more controllable than meds and it gives him more sensation and control in his sphincter muscles. But this isn’t a miracle cure- just a potentially better method of bowel management. It’s good to have our expectations adjusted.

Venturing Out of the House

Joshua made his first trip out of the house today for a quick lunch and grocery run. Of course we went along as well since his car seat won’t fit in the driver’s seat. 🙂 Actually, we were all getting a little cabin fever. He had to stand up while eating at Firehouse Subs. And by the time we were half way through Meijer, he was worn out. I had to take him out to the car while Aunt Della and Michelle finished shopping. He was fine once he got to the car and entertained himself with a HotWheels toy he bought with some chore money.

Also, I wanted to say a special thanks to Pastor Hamilton and the folks at Westerville Bible Church for being so welcoming. It was a blessing to join them for the morning service.

Thanks Aunt Della

Aunt Della has graciously allowed us to crash at her place for the time we are in Columbus. As you can see, Joshua is enjoying his aunt very much.

We’ve also get to see several other family members while here. That adds a nice blessing to two surgeries.