Well after being absent from the fourms for quite a while, I am back. Parker was checked into the hospital Friday for a "Tune Up" as his pulmonologist put it. This morning they are talking about putting in a Picc line. I am trying to spend as much time there as I can but with another child (2) and work that is moderatly sympathetic (must hang on to that insurance), I am relying on my ex-wife to act as a mother for him which is really unique for her. (read old posts for the background). The one really good piece of news from this is that it sound like Parker is taking this seriously now. When it comes to our regular routine for care, I do not think there will be as much resistance to preventative care. I will hope and pray and see him tomorrow when I have a couple of days off to stay down there. I hope to get straight answers from the medical staff when I get there because thus far I feel like I am in the dark.
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Sometimes your the windshield and sometimes your the bug
- Thread starter jimiv
- Start date
Well after being absent from the fourms for quite a while, I am back. Parker was checked into the hospital Friday for a "Tune Up" as his pulmonologist put it. This morning they are talking about putting in a Picc line. I am trying to spend as much time there as I can but with another child (2) and work that is moderatly sympathetic (must hang on to that insurance), I am relying on my ex-wife to act as a mother for him which is really unique for her. (read old posts for the background). The one really good piece of news from this is that it sound like Parker is taking this seriously now. When it comes to our regular routine for care, I do not think there will be as much resistance to preventative care. I will hope and pray and see him tomorrow when I have a couple of days off to stay down there. I hope to get straight answers from the medical staff when I get there because thus far I feel like I am in the dark.
Well after being absent from the fourms for quite a while, I am back. Parker was checked into the hospital Friday for a "Tune Up" as his pulmonologist put it. This morning they are talking about putting in a Picc line. I am trying to spend as much time there as I can but with another child (2) and work that is moderatly sympathetic (must hang on to that insurance), I am relying on my ex-wife to act as a mother for him which is really unique for her. (read old posts for the background). The one really good piece of news from this is that it sound like Parker is taking this seriously now. When it comes to our regular routine for care, I do not think there will be as much resistance to preventative care. I will hope and pray and see him tomorrow when I have a couple of days off to stay down there. I hope to get straight answers from the medical staff when I get there because thus far I feel like I am in the dark.<BR>
M
Mommafirst
Guest
Oh Jim, I'm so sorry. Cf seems to rear its ugly head at the most inopportune times and often catches us off guard and sends us into a tail spin. I hope Parker's mother steps up here and does the right things. And I'm hoping this is a quick and productive stay.
M
Mommafirst
Guest
Oh Jim, I'm so sorry. Cf seems to rear its ugly head at the most inopportune times and often catches us off guard and sends us into a tail spin. I hope Parker's mother steps up here and does the right things. And I'm hoping this is a quick and productive stay.
M
Mommafirst
Guest
Oh Jim, I'm so sorry. Cf seems to rear its ugly head at the most inopportune times and often catches us off guard and sends us into a tail spin. I hope Parker's mother steps up here and does the right things. And I'm hoping this is a quick and productive stay.
TreasureGoddess
Member
Good luck Jim! That's such a stressful time for parents as well as the kids themselves AND the siblings, job, etc. Hang in there, hope it's a quick fix and the tune-up goes quick. Usually they last 1-2 weeks and the kiddo's feel much better within the first 3-4 days on iv antibiotics. Try to get some sleep yourself in the midst of all the crazy.<br><br>
TreasureGoddess
Member
Good luck Jim! That's such a stressful time for parents as well as the kids themselves AND the siblings, job, etc. Hang in there, hope it's a quick fix and the tune-up goes quick. Usually they last 1-2 weeks and the kiddo's feel much better within the first 3-4 days on iv antibiotics. Try to get some sleep yourself in the midst of all the crazy.<br><br>
TreasureGoddess
Member
Good luck Jim! That's such a stressful time for parents as well as the kids themselves AND the siblings, job, etc. Hang in there, hope it's a quick fix and the tune-up goes quick. Usually they last 1-2 weeks and the kiddo's feel much better within the first 3-4 days on iv antibiotics. Try to get some sleep yourself in the midst of all the crazy.<br><br>
I appreciate the support. I think Parker and I both got suckered into reading the press clippings a little too much about VX-770 and VX-809. He was looking forward to that being a "cure" that he was hostile and resistant to following the routine of treatments and I was too tired to force the issue sometimes. When he and I were talking this morning I asked him if we needed a new routine for home and his remark was "yeah, we should follow the routine we had set up". I believe this will be for the best when it is over but I do not like the idea of him needing all this extra attention and lines put in. I hate limiting his activities but that is what is going to come from this. Perhaps limits now will prevent limits later.
I appreciate the support. I think Parker and I both got suckered into reading the press clippings a little too much about VX-770 and VX-809. He was looking forward to that being a "cure" that he was hostile and resistant to following the routine of treatments and I was too tired to force the issue sometimes. When he and I were talking this morning I asked him if we needed a new routine for home and his remark was "yeah, we should follow the routine we had set up". I believe this will be for the best when it is over but I do not like the idea of him needing all this extra attention and lines put in. I hate limiting his activities but that is what is going to come from this. Perhaps limits now will prevent limits later.
<BR>I appreciate the support. I think Parker and I both got suckered into reading the press clippings a little too much about VX-770 and VX-809. He was looking forward to that being a "cure" that he was hostile and resistant to following the routine of treatments and I was too tired to force the issue sometimes. When he and I were talking this morning I asked him if we needed a new routine for home and his remark was "yeah, we should follow the routine we had set up". I believe this will be for the best when it is over but I do not like the idea of him needing all this extra attention and lines put in. I hate limiting his activities but that is what is going to come from this. Perhaps limits now will prevent limits later.
M
Mommafirst
Guest
The vertex drugs are amazing, but they aren't a cure. Please talk to Parker about how they will not undo damage done, so his most important job as he waits for these and other meds to come out is to keep up with his health and keep those lungs as good as they can be.
M
Mommafirst
Guest
The vertex drugs are amazing, but they aren't a cure. Please talk to Parker about how they will not undo damage done, so his most important job as he waits for these and other meds to come out is to keep up with his health and keep those lungs as good as they can be.
M
Mommafirst
Guest
The vertex drugs are amazing, but they aren't a cure. Please talk to Parker about how they will not undo damage done, so his most important job as he waits for these and other meds to come out is to keep up with his health and keep those lungs as good as they can be.