We're sitting in the hospital once again. We've been in and out again three times in the last month or so. I've decided to try and blog at least a few days a week as we go through this new journey.
I've tried to write a few times in the last several months as we have been battling one sickness after another in our family. I just haven't been able to manage to finish even one that I started.
Part of the problem is time; I haven't been managing time very well. Another part is that so much has been going on that it seems like too much to communicate without being so long as to become the next Great American Endless Whining Blogpost.
So I decided instead to blog about this most recent part of the wilderness; we'll be navigating it for the next 28 days at least.
Adam is in the hospital with a shunt infection. He's 24 years old now, and this is the first time we're dealing with this issue. He's had lots of surgeries over the years, but this is the first time he's gotten infected following a surgery and hospitalization. It's going to be a long haul. It will take at least 28 days to treat this infection, if it's a superbug like the infectious disease doctors suspect that it is. We don't know how he got it or which variety of bug it is for sure, but tomorrow we should have the name of the culprit. And then the decision of which combination of antibiotics will kill it.
Adam was in the hospital for a shunt revision last month, and the doctor decided to externalize the catheter in his brain so that it would drain outside his body for a time, and to keep him on i.v. antibiotics while he went through this process. It didn't show in the blood work and cultures, but he suspected a shunt infection at the time. After many days, Adam went back to the o.r. and they replaced and reconnected the catheter in his head with the catheter in his body, which drains the cerebral-spinal fluid from his brain, down through his trunk and into his belly. He also had numerous ct scans, xrays, and blood work during his stay in Stony Brook Hospital. We went home after 2 weeks total and were so happy to see our house again! That was short lived.
Adam began to have swelling and pain around the incision, and then began draining fluid out the lower end of the scar. This was very dangerous, and left him open to infection from any of a host of bugs in the environment. After only a day, we were back in the hospital. They glued his incision closed and we waited for his surgeon to return from vacation to decide what to do next. Adam was given another course of antibiotics as we waited. He was scheduled for more surgery when his doctor returned, but because of several emergencies that were more in need of urgent intervention, Adam got bumped from the schedule. That night, the swelling in his head went down, and his neurosurgeon decided to send us home and wait and see what developed. (or didn't develop)
What developed was swelling up and swelling down, caused by fluid leaking from his shunt and collecting under his skin. After another 8 days, the incision couldn't contain the pressure and Adam's scar began leaking again. So here we sit, day 3, and here we will sit for another 28 days at least.
Adam has had surgery again, and all the hardware in his body has been removed. The catheter in his brain has been replaced with an antimicrobial variety, which won't allow any bacteria to adhere to it and survive. His shunt is draining externally once again, and will remain so until all traces of bacteria are gone from his cerebral-spinal fluid. He will be tested every few days to see if the antibiotics are working. I'll keep you posted as to what's happening.
"You keep him in perfect peace whose mind is stayed on you, because he trusts in you." Isaiah 26:3. I can't say that all my thoughts are on Him all the time, but I can say that He is faithful, and for most of these times, I am at peace. I don't like what's happening and I truly wish we didn't have to walk this path, but I'm thankful that God is with us and that He sustains us through it all. I am trusting God to bring us through this, and that there will be things we learn, victories to celebrate, and stories of His goodness to share.
I'm also thankful for the many, many family members, friends, and friends of friends who are praying for us and especially for Adam. You are worth your weight in gold. Better still, make that diamonds.
I've tried to write a few times in the last several months as we have been battling one sickness after another in our family. I just haven't been able to manage to finish even one that I started.
Part of the problem is time; I haven't been managing time very well. Another part is that so much has been going on that it seems like too much to communicate without being so long as to become the next Great American Endless Whining Blogpost.
So I decided instead to blog about this most recent part of the wilderness; we'll be navigating it for the next 28 days at least.
Adam is in the hospital with a shunt infection. He's 24 years old now, and this is the first time we're dealing with this issue. He's had lots of surgeries over the years, but this is the first time he's gotten infected following a surgery and hospitalization. It's going to be a long haul. It will take at least 28 days to treat this infection, if it's a superbug like the infectious disease doctors suspect that it is. We don't know how he got it or which variety of bug it is for sure, but tomorrow we should have the name of the culprit. And then the decision of which combination of antibiotics will kill it.
Adam was in the hospital for a shunt revision last month, and the doctor decided to externalize the catheter in his brain so that it would drain outside his body for a time, and to keep him on i.v. antibiotics while he went through this process. It didn't show in the blood work and cultures, but he suspected a shunt infection at the time. After many days, Adam went back to the o.r. and they replaced and reconnected the catheter in his head with the catheter in his body, which drains the cerebral-spinal fluid from his brain, down through his trunk and into his belly. He also had numerous ct scans, xrays, and blood work during his stay in Stony Brook Hospital. We went home after 2 weeks total and were so happy to see our house again! That was short lived.
Adam began to have swelling and pain around the incision, and then began draining fluid out the lower end of the scar. This was very dangerous, and left him open to infection from any of a host of bugs in the environment. After only a day, we were back in the hospital. They glued his incision closed and we waited for his surgeon to return from vacation to decide what to do next. Adam was given another course of antibiotics as we waited. He was scheduled for more surgery when his doctor returned, but because of several emergencies that were more in need of urgent intervention, Adam got bumped from the schedule. That night, the swelling in his head went down, and his neurosurgeon decided to send us home and wait and see what developed. (or didn't develop)
What developed was swelling up and swelling down, caused by fluid leaking from his shunt and collecting under his skin. After another 8 days, the incision couldn't contain the pressure and Adam's scar began leaking again. So here we sit, day 3, and here we will sit for another 28 days at least.
Adam has had surgery again, and all the hardware in his body has been removed. The catheter in his brain has been replaced with an antimicrobial variety, which won't allow any bacteria to adhere to it and survive. His shunt is draining externally once again, and will remain so until all traces of bacteria are gone from his cerebral-spinal fluid. He will be tested every few days to see if the antibiotics are working. I'll keep you posted as to what's happening.
"You keep him in perfect peace whose mind is stayed on you, because he trusts in you." Isaiah 26:3. I can't say that all my thoughts are on Him all the time, but I can say that He is faithful, and for most of these times, I am at peace. I don't like what's happening and I truly wish we didn't have to walk this path, but I'm thankful that God is with us and that He sustains us through it all. I am trusting God to bring us through this, and that there will be things we learn, victories to celebrate, and stories of His goodness to share.
I'm also thankful for the many, many family members, friends, and friends of friends who are praying for us and especially for Adam. You are worth your weight in gold. Better still, make that diamonds.
