Last week Sue meet with a surgeon at Children’s Hospital (Washington, D.C.). It was a pre-operative meeting, where she gave Ryan’s medical history and then acquired clearance for surgery to have the internally implanted baclofen pump removed. All went as expected and Ryan is in line to have it removed.
We are looking at early October for the surgery. I’ll let you know the exact date once we have someone to house-sit.
This is just over five months since Ryan’s weaning from the baclofen drug. This is a powerful skeletal muscle relaxer and when pumped directly into the spinal column doesn’t need to cross the blood-brain barrier; increasing its potency exponentially. Just one year ago I never thought this day was possible. It wasn’t until the beginning of this year that I started thinking it might just happen. In late April, once entirely removed from the drug, I decided to wait three to six months before having the pump removed… just in case. During this span the pump was filled with saline solution and run at the minimum rate just so it wouldn’t seize.
With this out it not only alleviates any pain from having the device in his abdomen, it also makes therapy less worrisome when Ryan is on his stomach. Hey, having that huge lump gone is nice too!
The downside is Ryan needs admitted for a minimum of twenty-four hours after the surgery; strictly for monitoring. The risks are comparable to any other surgery, with a few more specific to this operation. Although rare, it is possible to have cranial and/or spinal fluid issues, like leakage or an air bubble. These complications are similar to the risks of an epidural. The tell-tale sign of this is extreme headache (where we’ll need to watch his heart rate for signs of discomfort) and profuse vomiting. With that said, my greatest concern is Ryan’s exposure to highly resistant bacteria found in every hospital (MRSA and C-Diff, to name a couple).
My plan is to have the house on lockdown at least ten days before the surgery and probably two weeks following. Think of it as “reverse quarantine”. I won’t even bring the mail or a delivery into the house without first hitting it with the ultraviolet lamp to kill any viruses and bacteria. It’s worth the effort, even if it might be a bit extreme.
Glad to hear Ryan will no longer need the pump and we pray for a safe successful surgery.
Hi Ken — this is another big milestone that you have made happen for your son — not only did you initiate and monitor the baclofen reduction, you are now getting the pump removed. I think what you’ve done is nothing short of amazing, because you had to make these important decisions pretty much on your own — maybe entirely on your own. Looking at recent pictures of Ryan, he looks so good, thanks to the daily loving care you and Sue provide. It shows – oh does it ever.
I think your approach of limiting contact with Ryan before and after the surgery is the very best. I will be praying that Ryan does not come into contact with any of those “super bugs” you mentioned. Gosh, what a worry — but hopefully with all the precautions they take everything will be okay.
Sending you love and prayers, as always, and many hugs
Paula
Ken ,Glad to hear pump is coming out.Ryan should be more comfortable.And I don’t blame you for having to be SO careful for infections.I don’t think it’s extreme at all.Praying all goes well.Know you will keep us up to date. Hope Ryan is doing good now with no more congestion or UTIs.You all have my deepest admiration for getting Ryan where he is today and know he will go even further.Always here !!!
love Gail
Yes, you are correct. I should have been more specific.
Use Lysol too — I don’t think that UV light destroys viruses, only bacteria.
Glad to hear this~ we were all sitting on the edge of our seats every time you reduced the Baclofen. So glad it’s gotten to this point and Ryan will have one less piece of equipment in his body. I hope he’s feeling better today.
We know you will be glad to get this surgery behind you! The “reverse quarantine” is a good idea — can’t be too careful. If my memory serves me well, germs cannot survive without moisture longer than about 2 hours, but Lord only knows these days with new strains of bacteria and viruses. “Better safe than sorry” is a good mantra for a time like this.
Thank you for this update. Praying for Ryan’s surgical procedure to go well. Always here with love and prayers.