day to day life
Posted by Tonni Brende on Thursday, February 27, 2014
Feb 27, 2014
Overall, Johnathan has done very well since contracting spinal meningitis after his baclofen pump replacment surgery over a year ago. The whole 30 day inpatient and fragile state he was in there and then again being admitted after getting back home, took a major toll on Johnathan and I both. We decided to take the year we had to wait, in makign sure there are no after affects to the meningitis, we decided to stay close to home. Gladly, we only had a few sicknesses during this time. Sadly, those illnesses have been pneumonia. I believe he has now had it like 5 times in the last 2 years; this is not good.
We learned in St Louis that Johnathan does not have reflux, but anxiety puking...15 years he's been treated for reflux. We started him on 1/2 ml of adavan to be given half an hour before any outings, which is the main time his anxiety puking occurs. For a while, he did real good with this, but lately, it is back and very unpredictable. Some of his meds have been changed since we started, so we are going to try and see if we can pinpoint what combination worked. He was taking oral baclofen and periactin when things were under control, as well as zofran scheduled. We have just switched his formula back to regular pediasure and started him back on the zofran....now we wait and see...
He does still need his hardware removed from his right hip and the tendon/ligament release we have been waiting years for, but that is after the puking gets controlled again.
Overall, Johnathan has done very well since contracting spinal meningitis after his baclofen pump replacment surgery over a year ago. The whole 30 day inpatient and fragile state he was in there and then again being admitted after getting back home, took a major toll on Johnathan and I both. We decided to take the year we had to wait, in makign sure there are no after affects to the meningitis, we decided to stay close to home. Gladly, we only had a few sicknesses during this time. Sadly, those illnesses have been pneumonia. I believe he has now had it like 5 times in the last 2 years; this is not good.
We learned in St Louis that Johnathan does not have reflux, but anxiety puking...15 years he's been treated for reflux. We started him on 1/2 ml of adavan to be given half an hour before any outings, which is the main time his anxiety puking occurs. For a while, he did real good with this, but lately, it is back and very unpredictable. Some of his meds have been changed since we started, so we are going to try and see if we can pinpoint what combination worked. He was taking oral baclofen and periactin when things were under control, as well as zofran scheduled. We have just switched his formula back to regular pediasure and started him back on the zofran....now we wait and see...
He does still need his hardware removed from his right hip and the tendon/ligament release we have been waiting years for, but that is after the puking gets controlled again.
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