Feb 27, 2014
The year went by so fast, and thankfully, we never had any more issues with the meningitis. The pump is back on and adjusted above where he was before the surgery. We will continue to monitor him and adjust when needed.
May 9, 2013
On April 9th, Johnathan had his baclofen pump and the catheter replaced. It was time to replace the pump, but the catheter had a hole in it, again. It has been years since we had the last catheter hole, but it was fixed by just cutting out the hole and replacing it back to the pump. It has been about the same amount of time for the last pump replacement. We really had no issues with the original placement, or any of the other repairs and/or replacements, but this time brought a whole new set of firsts.
Everything went good with the initial removal and replacement of the new hardware. We had surgery on Tuesday and were discharged to the rehab hospital Friday. Dr. Anderson and Kieth from Orthotic & Prosthetic Lab have invented a one piece hard trunk brace that puts direct pressure on both the front and back. They have had great results from the use of this brace, preventing spinal leaks. Johnathan was casted both front and back to be sure of a perfect fit. However, since Kieth knew Johnathan and I, and in trying to make things easier for us both, he made a two piece brace. Our 1st night at Ranken-Jordan, Johnathan's front incision started leaking. Whenever the bandage was full, we would have to replace it. The 2nd time we replaced the front, we then rolled him over to put the brace on, and when we rolled him back over, it was full again. That is when the nurse said there was a pocket, in which she slightly pressed and found it and continued pressing until it stopped coming out. The next day, the back also started leaking; it seemed all we did was change bandages. I even started masking and gloving and draining the incision as the nurse then replaced the tape. Johnathan's poor back was so red from tape replacement; it even started to bleed. That Wednesday, Dr Anderson and Keith decided to make us the one piece brace, since it can not move side to side and so far up and down, like the two pieced does. Also, it does not have to be removed for diaper changes either. Sadly, the leak never stopped.
Friday, the 19th, Jody brought Zane & Connor down to visit. She stayed with Johnathan and gave me the opportunity to spend time with my other boys. Johnathan was running small 99.2-99.8 temps that afternoon, but overall was doing good, so we thought nothing of it. About 2AM, everything changed, really bad, really fast. he started running 104 temps and was very uncomfortable. When I saw him the next morning, they had him stable, just acting tired, weak. They decided to start antibiotics right away and see if they could get ahold of things. I took the boys out for the day; Jody stayed with John. About 4-5PM, Jody said they were transferring him to the hospital; that he was in real bad shape. Terrifying news when a mom is an hour plus away. I met them at the hospital; Dr Anderson came and did a spinal tap thru the port on his new pump. Johnathan has spinal meningitis. As to the exact kind of bacteria, we could not get, since he had started antibiotics before the spinal tap was done. However, I am very glad that Ranken-Jordan jumped on this the way they did, for I feel the worse part didn't last as long as it could have because they were so thorough so quickly. Spinal meningitis is one of the scariest things I have ever seen. I truly thought Johnathan was going to come out of it with more brain damage than he already had. I am so gratful that he didn't. His head kept rhythm going center to right, over and over and over, for a full day. I never want to see such a thing ever again.
In the middle of all this, Johnathan's incisions continued to leak. He had to have surgery to place a drain in the spine. Even though he was already getting better, I was still really scared that he was having another surgery so soon, adn while he was still soo sick. He had the drain placed Friday and the pic-line placed the following Monday. He had labs and spinal taps for the first 3 days; everything was working, but at the risk of kidney function. He was on 2 major antibiotics for 2 weeks IV, then 1 week oral. We went back to Ranken-Jordan the same day we started the oral baclofen. We were able to remove the pic-line the same day.
We never had to change any more bandages, and the following Monday, we were even able to remove the drain; 3 days later we were heading home. He was still very weak, but started eating his first day home; I guess he just needs the comfort of home in order to heal. He is getting stronger every day. We still have the anxiety puking to deal with, but that is nothing compared to bacterial meningitis.
