Mason had surgery on 6/10/14 to have the baclofen pump placed. The procedure went well, his recovery in the hospital was awesome and Mason was discharged on 6/13/14 with no need for antibiotics.
On 6/22/14, we had family over for a grill-out. Mason spent most of the night doing what he does often - hanging out on the living room floor watching cartoons. Mason started showing irritability that night once we picked him up - we noticed tightness in his legs again and general discomfort around the site of the pump (it was tender if we touched it, and quite warm.) We decided to give Mason another oral dose of baclofen because maybe he was just extra tight after the long weekend. Mason had great difficulties getting comfortable that night and his temp started to increase. We gave him some ibuprofen, and about 9:30 that night, decided we wanted to get him checked in Marshfield. About 20 minutes on our way to the hospital, Mason's fever broke. It was a Sunday night, we both had to work in the morning, and we made the decision to turn back home. We tried to make him comfortable at home and eventually, he did get a little sleep. He was clearly very tight all night, almost like the pump stopped working or something.
I called the docs first thing the next morning to explain what had happened. Mason had follow-up appts scheduled that afternoon with neurosurgery and physical medicine anyway, so we decided to just keep those.
Chris took him to those appointments. They also noticed the redness and swelling and decided to put him on some antibiotics and send him home. They said if he had any discharge from the incisions to come back in right away. After his first dose of the antibiotics, Mason was back to normal. Happy, no temp, acting his normal self.
On Tuesday, I headed out of town with a friend. I checked in with Chris regularly to check on Mason and all reports were "yes, he's doing great...happy."
On Thursday, 6/26/14, Chris called to say that Megan noticed some puss around the incision site. This alerted him and he asked her to send a picture. Once Chris got the pic, he sent it to me and we both thought - crap. Not good.
Chris called Marshfield Clinic and they said to bring him in right away. By the time Chris got here (3 pm or so), the site had swollen as if there were a baseball under his skin. Keep in mind that Chris checked the incision that morning before he left for work so the swelling/liquid all happened in a matter of 8 hours. When he got to Marshfield Clinic, he went to neurosurgery. A physician's assistant took a 4 inch needle and injected it into his belly and drew out 2 oz of liquid. Chris described it as snot-colored. I'm thankful I wasn't here for that. I would have thrown up and passed out. They sent it for testing and once results came back (high WBC), Mason was admitted.
Once up in pediatrics, they got Chris to sign all the consents to get him into surgery around 7 pm. At this point, I was still out of town. Chris assured me that there was nothing I could do here while he was in surgery.
Mason came out of surgery a little after 8 pm - in a great deal of pain. The meds they used last time that worked awesome (Fetanyl) weren't doing the trick and it took a good hour to find something to help him relax. They finally gave him Ativan to help him relax. I got here just before midnight and Mason has been pretty drugged and resting since then.
During the surgery, they took a sample of Mason's spinal fluid. They are testing it to make sure that the bacteria did not get into his spinal fluid - which could be extremely dangerous. We are waiting on results. They also did a smear of the bacteria to find out exactly what bacteria caused this infection and we hope to get those results early this morning as well. That will determine the course of treatment.
Chris has been amazing dealing with all of this. Not only was he dealing with all the nurses/docs/questions but the nonstop texts from me wanting updates until I got here. I have not been doing so great with this. I go from high anxiety, to having an emotional breakdown, all in private of course - I don't let people see me cry. I think I had my first panic attack on the way to Marshfield last night as reality set in that "this is our life." I'm just fucking sick of it all. (and I apologize Dad for swearing) but this blog allows me to be me - raw in my emotions and I'm not always going to be able to hide that.
Chris mentioned having the surgery again in a month or so to have the pump put back in and I'm just not ready for that. I'm pissed. I'm frustrated. I don't like being here and even more, I hate seeing Mason like this. This is not the life I want for him - constantly in and out of clinic visits and hospital stays. I am very aware that there are people that deal with much more than we do but I don't think that matters to me right now.
Thank you everyone for dealing with my emotions outpouring on here. We really, really do appreciate all of your love and support and know that you are praying for him and wishing him the best. Please don't take this post as a pity-party in any way...I just want it to be honest and real.
(Hugs)
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