Journal entry by Bethany Faber —
It's been a week since my last update - and we are headed in the right direction.... Josh had repeated labs every couple days and the CRP number crept up a little but then started to decline (which is the goal). Josh's doctor consulted with a GI doctor and the infectious disease docs to determine if there was anything in addition that should be looked into....so additional labs and xrays were ordered.....This was more in order to rule out or determine if something else is going on (aside from a slow recovery from the appendectomy).
A chest and abdominal xray were completed. One of the things they were looking for was pneumonia in the diaphragm which apparently can cause pain/discomfort even if the person isn't showing symptoms of being sick. Both of Josh's Xrays we normal. Nothing odd was found in the labs per the infectious disease doctors.....
One of the blood tests (called SED Rate) was elevated but it was not a test that had previously been completed so there was not a baseline to compare it to.... My general understanding is the SED Rate number indicates the inflammation in the body over a period of time while the CRP is the inflammation the body has right now..... The SED Rate changes much slower than the CRP. Josh had not had the SED rate checked until now so there was not a baseline number to compare it to (this would be helpful information as some people can have a baseline SED rate that is higher than 'normal' due to auto immune conditions - we haven't had concerns about these so Josh hadn't been tested). The CRP and SED Rate were checked this past Sunday and again on Tuesday....
The CRP number declined enough that Josh's doctor felt more comfortable saying the picc line could be removed as if there was an infection that would require IV antibiotics we would expect the CRP to be increasing..... However, the elevated SED Rate had only declined by 1 number, which was not as much as the doctor would have liked to see and consulted with GI. Considering Josh's cumulative health/medical history and his lengthy recovery from the appendectomy the GI doc suggested an appointment just in case there was something happening or that she was concerned about following an additional lab or two..... the GI appointment is scheduled in a couple weeks.
We are celebrating as Josh's picc line was removed yesterday afternoon😀 It took longer than anticipated but Josh did FANTASTIC! The process started smoothly with removing the cap (which was a little painful) and then pulling the line out. The nurse was awesome and the first half of the line came out easily, which is normal.... but then there was some resistance....apparently this can happen when a picc line is in place for a while and/or when the vein starts constricting (which is not uncommon).... So the nurse spent about 1.5 hours at our house while we applied heat (warm towels/warm packs) to the arm for 15-20 minutes and then she would try again to pull the line out.... The nurse wanted to be cautious (which we appreciated) and checked in with her supervisor a number of times while heat was applied.... Another home nurse was heading towards the same area so he stopped by to see if there was anything he could do.... The nurse did mention that if the line could not be removed completely we would need to go to the ED (my blood pressure might have spiked at that moment - although waiting in the ED with a child who is not in pain/sick would be a new experience....)
The second nurse arrived and following a conversation between both nurses he attempted to try to pull the line.... the line was still resistant so he asked Josh to plug his nose and blow air out of his mouth on the next attempt.... Josh followed the instructions, the line easily slid out the rest of the way, and there was some cheering.... The nurses made sure the entire line had come out, gave us care instructions for the next few days, and then they were on their way. Josh had to lay on his back the entire time. And each trial required the area where the line exited his arm to be covered with a bandage (the kind that require adhesive remover to get off).... it was quite the process...
Josh had a PT evaluation this week and he is doing well considering how long he was in the hospital and/or in bed at home..... The PT gave us some suggestions to help get Josh's body readjusted to activity, he feels a little unsteady when moves too fast (when standing up after sitting/laying down) and when running. We are going to have a follow up appointment in a couple weeks to see if the suggestions she shared are helping.
Lastly, Josh had a dental appointment today and has a cavity that needs to be filled..... The dentist has always been anxiety provoking for him, especially since he had to have a number of teeth extracted when he was younger (his baby teeth refused to become loose and the adult teeth were trying to come in and did not have any space).... He hasn't had a cavity filled before as the one he had was a baby tooth so they opted to do something else to fill the cavity and then it came out..... at least its small and hopefully all will go smoothly for him.... it breaks my heart that he has had to experience so much over the past month+......
A chest and abdominal xray were completed. One of the things they were looking for was pneumonia in the diaphragm which apparently can cause pain/discomfort even if the person isn't showing symptoms of being sick. Both of Josh's Xrays we normal. Nothing odd was found in the labs per the infectious disease doctors.....
One of the blood tests (called SED Rate) was elevated but it was not a test that had previously been completed so there was not a baseline to compare it to.... My general understanding is the SED Rate number indicates the inflammation in the body over a period of time while the CRP is the inflammation the body has right now..... The SED Rate changes much slower than the CRP. Josh had not had the SED rate checked until now so there was not a baseline number to compare it to (this would be helpful information as some people can have a baseline SED rate that is higher than 'normal' due to auto immune conditions - we haven't had concerns about these so Josh hadn't been tested). The CRP and SED Rate were checked this past Sunday and again on Tuesday....
The CRP number declined enough that Josh's doctor felt more comfortable saying the picc line could be removed as if there was an infection that would require IV antibiotics we would expect the CRP to be increasing..... However, the elevated SED Rate had only declined by 1 number, which was not as much as the doctor would have liked to see and consulted with GI. Considering Josh's cumulative health/medical history and his lengthy recovery from the appendectomy the GI doc suggested an appointment just in case there was something happening or that she was concerned about following an additional lab or two..... the GI appointment is scheduled in a couple weeks.
We are celebrating as Josh's picc line was removed yesterday afternoon😀 It took longer than anticipated but Josh did FANTASTIC! The process started smoothly with removing the cap (which was a little painful) and then pulling the line out. The nurse was awesome and the first half of the line came out easily, which is normal.... but then there was some resistance....apparently this can happen when a picc line is in place for a while and/or when the vein starts constricting (which is not uncommon).... So the nurse spent about 1.5 hours at our house while we applied heat (warm towels/warm packs) to the arm for 15-20 minutes and then she would try again to pull the line out.... The nurse wanted to be cautious (which we appreciated) and checked in with her supervisor a number of times while heat was applied.... Another home nurse was heading towards the same area so he stopped by to see if there was anything he could do.... The nurse did mention that if the line could not be removed completely we would need to go to the ED (my blood pressure might have spiked at that moment - although waiting in the ED with a child who is not in pain/sick would be a new experience....)
The second nurse arrived and following a conversation between both nurses he attempted to try to pull the line.... the line was still resistant so he asked Josh to plug his nose and blow air out of his mouth on the next attempt.... Josh followed the instructions, the line easily slid out the rest of the way, and there was some cheering.... The nurses made sure the entire line had come out, gave us care instructions for the next few days, and then they were on their way. Josh had to lay on his back the entire time. And each trial required the area where the line exited his arm to be covered with a bandage (the kind that require adhesive remover to get off).... it was quite the process...
Josh had a PT evaluation this week and he is doing well considering how long he was in the hospital and/or in bed at home..... The PT gave us some suggestions to help get Josh's body readjusted to activity, he feels a little unsteady when moves too fast (when standing up after sitting/laying down) and when running. We are going to have a follow up appointment in a couple weeks to see if the suggestions she shared are helping.
Lastly, Josh had a dental appointment today and has a cavity that needs to be filled..... The dentist has always been anxiety provoking for him, especially since he had to have a number of teeth extracted when he was younger (his baby teeth refused to become loose and the adult teeth were trying to come in and did not have any space).... He hasn't had a cavity filled before as the one he had was a baby tooth so they opted to do something else to fill the cavity and then it came out..... at least its small and hopefully all will go smoothly for him.... it breaks my heart that he has had to experience so much over the past month+......
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