Dr. wants a 2-week tune-up

[Liza]

Hi, First I have to ask... You say your son has only been home a week? From where? Was he in hospital and now you are moving to a new clinic? If he was recently in the hospital was it for GI issues and not pulmonary issues?

Second, Why exactly does the new doc think he needs to have IV meds? I understand the baseline tests and being hospitalized for that and the bronch, but does he have low pft's, does he sound junky, does his blood work or x-rays show an infection? I ask this because we had one doc. admit our daughter Rachel for IV antibiotics not only because her pft's were down, slightly (which he could have tried oral first)but his exact words were... "she's never had a clean-out?" Her pft's were normally 100% and had dropped to like 95%. He said she needed an admit for at least 10 days most likely 14. She was 10. After the 7th day he said, "get her out of here, she's not sick". We had taken in her bike and put it on a trainer so she could "ride" her bike while she was in the hospital. Anyway, I"m getting away from myself here.

So what to do if his pft's are down and they want a clean-out along with other tests that they say will take 2 weeks. What kind of hospital is it? Will he be on a children's ward or is it a children's hospital? No matter which it is, they will most likely have a child life specialist. Their job is to help keep the kids (and parents) from going stir crazy. They usually (at least every hospital we've been to) have a play room, they have VCR's (DVD's sometimes now) in their rooms with videos to borrow. They have video games to be checked out and they organize activities geared to the children's ages. Crafts, games and books. If your son is school age and has any school work to be done, they have school too. Some hospitals have bikes (trykes) for the kids to ride as well as wagons. They usually will let you take them outside. Go down to the cafeteria and have a treat.

You will be just fine. No need to shave your head...yet.

 

[Liza]

Hi, First I have to ask... You say your son has only been home a week? From where? Was he in hospital and now you are moving to a new clinic? If he was recently in the hospital was it for GI issues and not pulmonary issues?

Second, Why exactly does the new doc think he needs to have IV meds? I understand the baseline tests and being hospitalized for that and the bronch, but does he have low pft's, does he sound junky, does his blood work or x-rays show an infection? I ask this because we had one doc. admit our daughter Rachel for IV antibiotics not only because her pft's were down, slightly (which he could have tried oral first)but his exact words were... "she's never had a clean-out?" Her pft's were normally 100% and had dropped to like 95%. He said she needed an admit for at least 10 days most likely 14. She was 10. After the 7th day he said, "get her out of here, she's not sick". We had taken in her bike and put it on a trainer so she could "ride" her bike while she was in the hospital. Anyway, I"m getting away from myself here.

So what to do if his pft's are down and they want a clean-out along with other tests that they say will take 2 weeks. What kind of hospital is it? Will he be on a children's ward or is it a children's hospital? No matter which it is, they will most likely have a child life specialist. Their job is to help keep the kids (and parents) from going stir crazy. They usually (at least every hospital we've been to) have a play room, they have VCR's (DVD's sometimes now) in their rooms with videos to borrow. They have video games to be checked out and they organize activities geared to the children's ages. Crafts, games and books. If your son is school age and has any school work to be done, they have school too. Some hospitals have bikes (trykes) for the kids to ride as well as wagons. They usually will let you take them outside. Go down to the cafeteria and have a treat.

You will be just fine. No need to shave your head...yet.

 

[Liza]

Hi, First I have to ask... You say your son has only been home a week? From where? Was he in hospital and now you are moving to a new clinic? If he was recently in the hospital was it for GI issues and not pulmonary issues?

Second, Why exactly does the new doc think he needs to have IV meds? I understand the baseline tests and being hospitalized for that and the bronch, but does he have low pft's, does he sound junky, does his blood work or x-rays show an infection? I ask this because we had one doc. admit our daughter Rachel for IV antibiotics not only because her pft's were down, slightly (which he could have tried oral first)but his exact words were... "she's never had a clean-out?" Her pft's were normally 100% and had dropped to like 95%. He said she needed an admit for at least 10 days most likely 14. She was 10. After the 7th day he said, "get her out of here, she's not sick". We had taken in her bike and put it on a trainer so she could "ride" her bike while she was in the hospital. Anyway, I"m getting away from myself here.

So what to do if his pft's are down and they want a clean-out along with other tests that they say will take 2 weeks. What kind of hospital is it? Will he be on a children's ward or is it a children's hospital? No matter which it is, they will most likely have a child life specialist. Their job is to help keep the kids (and parents) from going stir crazy. They usually (at least every hospital we've been to) have a play room, they have VCR's (DVD's sometimes now) in their rooms with videos to borrow. They have video games to be checked out and they organize activities geared to the children's ages. Crafts, games and books. If your son is school age and has any school work to be done, they have school too. Some hospitals have bikes (trykes) for the kids to ride as well as wagons. They usually will let you take them outside. Go down to the cafeteria and have a treat.

You will be just fine. No need to shave your head...yet.

 

[Liza]

Hi, First I have to ask... You say your son has only been home a week? From where? Was he in hospital and now you are moving to a new clinic? If he was recently in the hospital was it for GI issues and not pulmonary issues?

Second, Why exactly does the new doc think he needs to have IV meds? I understand the baseline tests and being hospitalized for that and the bronch, but does he have low pft's, does he sound junky, does his blood work or x-rays show an infection? I ask this because we had one doc. admit our daughter Rachel for IV antibiotics not only because her pft's were down, slightly (which he could have tried oral first)but his exact words were... "she's never had a clean-out?" Her pft's were normally 100% and had dropped to like 95%. He said she needed an admit for at least 10 days most likely 14. She was 10. After the 7th day he said, "get her out of here, she's not sick". We had taken in her bike and put it on a trainer so she could "ride" her bike while she was in the hospital. Anyway, I"m getting away from myself here.

So what to do if his pft's are down and they want a clean-out along with other tests that they say will take 2 weeks. What kind of hospital is it? Will he be on a children's ward or is it a children's hospital? No matter which it is, they will most likely have a child life specialist. Their job is to help keep the kids (and parents) from going stir crazy. They usually (at least every hospital we've been to) have a play room, they have VCR's (DVD's sometimes now) in their rooms with videos to borrow. They have video games to be checked out and they organize activities geared to the children's ages. Crafts, games and books. If your son is school age and has any school work to be done, they have school too. Some hospitals have bikes (trykes) for the kids to ride as well as wagons. They usually will let you take them outside. Go down to the cafeteria and have a treat.

You will be just fine. No need to shave your head...yet.

 

[Liza]

Hi, First I have to ask... You say your son has only been home a week? From where? Was he in hospital and now you are moving to a new clinic? If he was recently in the hospital was it for GI issues and not pulmonary issues?
<br />
<br />Second, Why exactly does the new doc think he needs to have IV meds? I understand the baseline tests and being hospitalized for that and the bronch, but does he have low pft's, does he sound junky, does his blood work or x-rays show an infection? I ask this because we had one doc. admit our daughter Rachel for IV antibiotics not only because her pft's were down, slightly (which he could have tried oral first)but his exact words were... "she's never had a clean-out?" Her pft's were normally 100% and had dropped to like 95%. He said she needed an admit for at least 10 days most likely 14. She was 10. After the 7th day he said, "get her out of here, she's not sick". We had taken in her bike and put it on a trainer so she could "ride" her bike while she was in the hospital. Anyway, I"m getting away from myself here.
<br />
<br />So what to do if his pft's are down and they want a clean-out along with other tests that they say will take 2 weeks. What kind of hospital is it? Will he be on a children's ward or is it a children's hospital? No matter which it is, they will most likely have a child life specialist. Their job is to help keep the kids (and parents) from going stir crazy. They usually (at least every hospital we've been to) have a play room, they have VCR's (DVD's sometimes now) in their rooms with videos to borrow. They have video games to be checked out and they organize activities geared to the children's ages. Crafts, games and books. If your son is school age and has any school work to be done, they have school too. Some hospitals have bikes (trykes) for the kids to ride as well as wagons. They usually will let you take them outside. Go down to the cafeteria and have a treat.
<br />
<br />You will be just fine. No need to shave your head...yet.
<br />
<br />

 

[just1more]

Liza, sorry I didn't clarify that.

M is adopted and was been in foster care in California until mid-March. Short story: he was removed from home due to medical neglect at 3 and put into a foster home. The goal of the home/dr's was to keep him alive, no more. Despite issues he has received no airway clearance in his life, his neb meds were not appropriate nor being administered properly, he has bowel issues and to our knowledge has NEVER had an even semi-solid stool in his life. Oh, and they did a liver biopsy last May which showed significant cihrosis (sp) but there is no mention of it in the clinic records after the biopsy other than a copy of the results and the foster mom didn't even know there was anything wrong~!@#$%

They weren't able to do any PFT's as nobody has ever tried and he was confused. So they did what they could, the pulmo & RT (seperately) both commented that they didn't like the sounds of his lungs. The pulmo was very concerned about the overall lack of agression in his care. So he wants to run the baseline tests, get some antibiotics into him (they drew labs while we were there), and give the various specialities a chance to look him over while we have him in one place. We will be a a children's hospital (Egleston Campus of Emory Univ in Atlanta) so hopefully they will be pretty good.

Tom

 

[just1more]

Liza, sorry I didn't clarify that.

M is adopted and was been in foster care in California until mid-March. Short story: he was removed from home due to medical neglect at 3 and put into a foster home. The goal of the home/dr's was to keep him alive, no more. Despite issues he has received no airway clearance in his life, his neb meds were not appropriate nor being administered properly, he has bowel issues and to our knowledge has NEVER had an even semi-solid stool in his life. Oh, and they did a liver biopsy last May which showed significant cihrosis (sp) but there is no mention of it in the clinic records after the biopsy other than a copy of the results and the foster mom didn't even know there was anything wrong~!@#$%

They weren't able to do any PFT's as nobody has ever tried and he was confused. So they did what they could, the pulmo & RT (seperately) both commented that they didn't like the sounds of his lungs. The pulmo was very concerned about the overall lack of agression in his care. So he wants to run the baseline tests, get some antibiotics into him (they drew labs while we were there), and give the various specialities a chance to look him over while we have him in one place. We will be a a children's hospital (Egleston Campus of Emory Univ in Atlanta) so hopefully they will be pretty good.

Tom

 

[just1more]

Liza, sorry I didn't clarify that.

M is adopted and was been in foster care in California until mid-March. Short story: he was removed from home due to medical neglect at 3 and put into a foster home. The goal of the home/dr's was to keep him alive, no more. Despite issues he has received no airway clearance in his life, his neb meds were not appropriate nor being administered properly, he has bowel issues and to our knowledge has NEVER had an even semi-solid stool in his life. Oh, and they did a liver biopsy last May which showed significant cihrosis (sp) but there is no mention of it in the clinic records after the biopsy other than a copy of the results and the foster mom didn't even know there was anything wrong~!@#$%

They weren't able to do any PFT's as nobody has ever tried and he was confused. So they did what they could, the pulmo & RT (seperately) both commented that they didn't like the sounds of his lungs. The pulmo was very concerned about the overall lack of agression in his care. So he wants to run the baseline tests, get some antibiotics into him (they drew labs while we were there), and give the various specialities a chance to look him over while we have him in one place. We will be a a children's hospital (Egleston Campus of Emory Univ in Atlanta) so hopefully they will be pretty good.

Tom

 

[just1more]

Liza, sorry I didn't clarify that.

M is adopted and was been in foster care in California until mid-March. Short story: he was removed from home due to medical neglect at 3 and put into a foster home. The goal of the home/dr's was to keep him alive, no more. Despite issues he has received no airway clearance in his life, his neb meds were not appropriate nor being administered properly, he has bowel issues and to our knowledge has NEVER had an even semi-solid stool in his life. Oh, and they did a liver biopsy last May which showed significant cihrosis (sp) but there is no mention of it in the clinic records after the biopsy other than a copy of the results and the foster mom didn't even know there was anything wrong~!@#$%

They weren't able to do any PFT's as nobody has ever tried and he was confused. So they did what they could, the pulmo & RT (seperately) both commented that they didn't like the sounds of his lungs. The pulmo was very concerned about the overall lack of agression in his care. So he wants to run the baseline tests, get some antibiotics into him (they drew labs while we were there), and give the various specialities a chance to look him over while we have him in one place. We will be a a children's hospital (Egleston Campus of Emory Univ in Atlanta) so hopefully they will be pretty good.

Tom

 

[just1more]

Liza, sorry I didn't clarify that.
<br />
<br />M is adopted and was been in foster care in California until mid-March. Short story: he was removed from home due to medical neglect at 3 and put into a foster home. The goal of the home/dr's was to keep him alive, no more. Despite issues he has received no airway clearance in his life, his neb meds were not appropriate nor being administered properly, he has bowel issues and to our knowledge has NEVER had an even semi-solid stool in his life. Oh, and they did a liver biopsy last May which showed significant cihrosis (sp) but there is no mention of it in the clinic records after the biopsy other than a copy of the results and the foster mom didn't even know there was anything wrong~!@#$%
<br />
<br />They weren't able to do any PFT's as nobody has ever tried and he was confused. So they did what they could, the pulmo & RT (seperately) both commented that they didn't like the sounds of his lungs. The pulmo was very concerned about the overall lack of agression in his care. So he wants to run the baseline tests, get some antibiotics into him (they drew labs while we were there), and give the various specialities a chance to look him over while we have him in one place. We will be a a children's hospital (Egleston Campus of Emory Univ in Atlanta) so hopefully they will be pretty good.
<br />
<br />Tom

 

[Mommafirst]

UGH, tune-ups are a very frustrating part of CF. We stayed in the hospital just 5 days and did the rest of the THREE weeks on IVs at home. So I'd beg your doctor to see if this is a possibility. You might try and see if the social worker might be helpful, as I'm sure you are still adjusting in your household and now have to upset the whole thing again to do this. BUT I do think it is very responsible of your doctors to want to get his care back on track, pronto!!!

My daughter was only 14 months her last hosptialization, and it was really tough to keep her occupied. You might call your Child Life department at the hospital to see if you can get help coordinating some daily activities to keep M occupied. Video games, movies, art activities, visits from his siblings.... you can usually get permission to take him out for a meal or if your hospital has a playground for a little bit. Although it probably would easier for your schedule to start allt his on a weekend, you might be much better off to get started on a Monday -- as weekends there is much less going on in the hospital to entertain a kiddo. GOood luck!!!!

 

[Mommafirst]

UGH, tune-ups are a very frustrating part of CF. We stayed in the hospital just 5 days and did the rest of the THREE weeks on IVs at home. So I'd beg your doctor to see if this is a possibility. You might try and see if the social worker might be helpful, as I'm sure you are still adjusting in your household and now have to upset the whole thing again to do this. BUT I do think it is very responsible of your doctors to want to get his care back on track, pronto!!!

My daughter was only 14 months her last hosptialization, and it was really tough to keep her occupied. You might call your Child Life department at the hospital to see if you can get help coordinating some daily activities to keep M occupied. Video games, movies, art activities, visits from his siblings.... you can usually get permission to take him out for a meal or if your hospital has a playground for a little bit. Although it probably would easier for your schedule to start allt his on a weekend, you might be much better off to get started on a Monday -- as weekends there is much less going on in the hospital to entertain a kiddo. GOood luck!!!!

 

[Mommafirst]

UGH, tune-ups are a very frustrating part of CF. We stayed in the hospital just 5 days and did the rest of the THREE weeks on IVs at home. So I'd beg your doctor to see if this is a possibility. You might try and see if the social worker might be helpful, as I'm sure you are still adjusting in your household and now have to upset the whole thing again to do this. BUT I do think it is very responsible of your doctors to want to get his care back on track, pronto!!!

My daughter was only 14 months her last hosptialization, and it was really tough to keep her occupied. You might call your Child Life department at the hospital to see if you can get help coordinating some daily activities to keep M occupied. Video games, movies, art activities, visits from his siblings.... you can usually get permission to take him out for a meal or if your hospital has a playground for a little bit. Although it probably would easier for your schedule to start allt his on a weekend, you might be much better off to get started on a Monday -- as weekends there is much less going on in the hospital to entertain a kiddo. GOood luck!!!!

 

[Mommafirst]

UGH, tune-ups are a very frustrating part of CF. We stayed in the hospital just 5 days and did the rest of the THREE weeks on IVs at home. So I'd beg your doctor to see if this is a possibility. You might try and see if the social worker might be helpful, as I'm sure you are still adjusting in your household and now have to upset the whole thing again to do this. BUT I do think it is very responsible of your doctors to want to get his care back on track, pronto!!!

My daughter was only 14 months her last hosptialization, and it was really tough to keep her occupied. You might call your Child Life department at the hospital to see if you can get help coordinating some daily activities to keep M occupied. Video games, movies, art activities, visits from his siblings.... you can usually get permission to take him out for a meal or if your hospital has a playground for a little bit. Although it probably would easier for your schedule to start allt his on a weekend, you might be much better off to get started on a Monday -- as weekends there is much less going on in the hospital to entertain a kiddo. GOood luck!!!!

 

[Mommafirst]

UGH, tune-ups are a very frustrating part of CF. We stayed in the hospital just 5 days and did the rest of the THREE weeks on IVs at home. So I'd beg your doctor to see if this is a possibility. You might try and see if the social worker might be helpful, as I'm sure you are still adjusting in your household and now have to upset the whole thing again to do this. BUT I do think it is very responsible of your doctors to want to get his care back on track, pronto!!!
<br />
<br />My daughter was only 14 months her last hosptialization, and it was really tough to keep her occupied. You might call your Child Life department at the hospital to see if you can get help coordinating some daily activities to keep M occupied. Video games, movies, art activities, visits from his siblings.... you can usually get permission to take him out for a meal or if your hospital has a playground for a little bit. Although it probably would easier for your schedule to start allt his on a weekend, you might be much better off to get started on a Monday -- as weekends there is much less going on in the hospital to entertain a kiddo. GOood luck!!!!

 

[TestifyToLove]

We actually expected they were going to want to hospitalize him soon after homecoming, we just thought in terms of a couple of months and his doctor thought in terms of a couple of weeks. Well, actualy he thought in faster terms than that until he found out that he had to have a judge to sign off on sedation because legally we can consent to everything but sedation/anesthesia until we finalize the adoption in the fall.

So far, the plan is that DH will take the first week off and stay in the hospital with M. I'll stay home with the other kids that week and we'll visit several times during the week, with one night we can swap off so Dh can actually sleep. The second week, MIL is flying down and I'll stay with him in the hospital, which means so will the nursling.

Dh is thinking if he's released early, he'll get some time to meet and play with his grandmother, or she can fly home early if she would prefer (yeah right, already got off work and a paid trip down to see her 7 grandkids, I'm guessing she'll choose to stick around and socialize with them).

As Dh mentioned, both the pulmo and the RT heard stuff in his lungs, and after they ran a chest X-ray they got more aggressive in getting this set-up, so I'm guessing they saw stuff too. In addition, he supposedly colonized for PA a year ago but that is in question. First, we don't have the labs. Second, according to the old pulmo, the first culture came back positive and the second (2 days later and without antibiotics) came back negative. The only response given then was to start Tobi, nothing more. And, he's never had ACTs in his life. No one has bothered. And, he's so unaccustomed to them its nearly impossible for us to do them manually. We're waiting for his vest to get here to start that.

Otherwise, since he is still legally a fosterkid and since anything requiring sedation does require the approval of a judge in California, his doctor seems to think it would be best to get a blanket approval, get him into the hospital and get specialists lined up to all see him and do what they want while he's there. It makes sense. And, its the kind of aggressive treatment we've argued he was lacking all along in fostercare.

Its just the suddeness of getting him and 6 siblings, including one nursling, ready for this so quickly is more than a bit overwhelming. He does not have schoolwork to do while there. Turns out, the school system wants us to enroll him after the hospital stay. Which wouldn't matter anyway. He's only in kindergarten, in special education and his schooling to date has been a joke. (One of his stated major educational goals for this year is to potty train.)

 

[TestifyToLove]

We actually expected they were going to want to hospitalize him soon after homecoming, we just thought in terms of a couple of months and his doctor thought in terms of a couple of weeks. Well, actualy he thought in faster terms than that until he found out that he had to have a judge to sign off on sedation because legally we can consent to everything but sedation/anesthesia until we finalize the adoption in the fall.

So far, the plan is that DH will take the first week off and stay in the hospital with M. I'll stay home with the other kids that week and we'll visit several times during the week, with one night we can swap off so Dh can actually sleep. The second week, MIL is flying down and I'll stay with him in the hospital, which means so will the nursling.

Dh is thinking if he's released early, he'll get some time to meet and play with his grandmother, or she can fly home early if she would prefer (yeah right, already got off work and a paid trip down to see her 7 grandkids, I'm guessing she'll choose to stick around and socialize with them).

As Dh mentioned, both the pulmo and the RT heard stuff in his lungs, and after they ran a chest X-ray they got more aggressive in getting this set-up, so I'm guessing they saw stuff too. In addition, he supposedly colonized for PA a year ago but that is in question. First, we don't have the labs. Second, according to the old pulmo, the first culture came back positive and the second (2 days later and without antibiotics) came back negative. The only response given then was to start Tobi, nothing more. And, he's never had ACTs in his life. No one has bothered. And, he's so unaccustomed to them its nearly impossible for us to do them manually. We're waiting for his vest to get here to start that.

Otherwise, since he is still legally a fosterkid and since anything requiring sedation does require the approval of a judge in California, his doctor seems to think it would be best to get a blanket approval, get him into the hospital and get specialists lined up to all see him and do what they want while he's there. It makes sense. And, its the kind of aggressive treatment we've argued he was lacking all along in fostercare.

Its just the suddeness of getting him and 6 siblings, including one nursling, ready for this so quickly is more than a bit overwhelming. He does not have schoolwork to do while there. Turns out, the school system wants us to enroll him after the hospital stay. Which wouldn't matter anyway. He's only in kindergarten, in special education and his schooling to date has been a joke. (One of his stated major educational goals for this year is to potty train.)

 

[TestifyToLove]

We actually expected they were going to want to hospitalize him soon after homecoming, we just thought in terms of a couple of months and his doctor thought in terms of a couple of weeks. Well, actualy he thought in faster terms than that until he found out that he had to have a judge to sign off on sedation because legally we can consent to everything but sedation/anesthesia until we finalize the adoption in the fall.

So far, the plan is that DH will take the first week off and stay in the hospital with M. I'll stay home with the other kids that week and we'll visit several times during the week, with one night we can swap off so Dh can actually sleep. The second week, MIL is flying down and I'll stay with him in the hospital, which means so will the nursling.

Dh is thinking if he's released early, he'll get some time to meet and play with his grandmother, or she can fly home early if she would prefer (yeah right, already got off work and a paid trip down to see her 7 grandkids, I'm guessing she'll choose to stick around and socialize with them).

As Dh mentioned, both the pulmo and the RT heard stuff in his lungs, and after they ran a chest X-ray they got more aggressive in getting this set-up, so I'm guessing they saw stuff too. In addition, he supposedly colonized for PA a year ago but that is in question. First, we don't have the labs. Second, according to the old pulmo, the first culture came back positive and the second (2 days later and without antibiotics) came back negative. The only response given then was to start Tobi, nothing more. And, he's never had ACTs in his life. No one has bothered. And, he's so unaccustomed to them its nearly impossible for us to do them manually. We're waiting for his vest to get here to start that.

Otherwise, since he is still legally a fosterkid and since anything requiring sedation does require the approval of a judge in California, his doctor seems to think it would be best to get a blanket approval, get him into the hospital and get specialists lined up to all see him and do what they want while he's there. It makes sense. And, its the kind of aggressive treatment we've argued he was lacking all along in fostercare.

Its just the suddeness of getting him and 6 siblings, including one nursling, ready for this so quickly is more than a bit overwhelming. He does not have schoolwork to do while there. Turns out, the school system wants us to enroll him after the hospital stay. Which wouldn't matter anyway. He's only in kindergarten, in special education and his schooling to date has been a joke. (One of his stated major educational goals for this year is to potty train.)

 

[TestifyToLove]

We actually expected they were going to want to hospitalize him soon after homecoming, we just thought in terms of a couple of months and his doctor thought in terms of a couple of weeks. Well, actualy he thought in faster terms than that until he found out that he had to have a judge to sign off on sedation because legally we can consent to everything but sedation/anesthesia until we finalize the adoption in the fall.

So far, the plan is that DH will take the first week off and stay in the hospital with M. I'll stay home with the other kids that week and we'll visit several times during the week, with one night we can swap off so Dh can actually sleep. The second week, MIL is flying down and I'll stay with him in the hospital, which means so will the nursling.

Dh is thinking if he's released early, he'll get some time to meet and play with his grandmother, or she can fly home early if she would prefer (yeah right, already got off work and a paid trip down to see her 7 grandkids, I'm guessing she'll choose to stick around and socialize with them).

As Dh mentioned, both the pulmo and the RT heard stuff in his lungs, and after they ran a chest X-ray they got more aggressive in getting this set-up, so I'm guessing they saw stuff too. In addition, he supposedly colonized for PA a year ago but that is in question. First, we don't have the labs. Second, according to the old pulmo, the first culture came back positive and the second (2 days later and without antibiotics) came back negative. The only response given then was to start Tobi, nothing more. And, he's never had ACTs in his life. No one has bothered. And, he's so unaccustomed to them its nearly impossible for us to do them manually. We're waiting for his vest to get here to start that.

Otherwise, since he is still legally a fosterkid and since anything requiring sedation does require the approval of a judge in California, his doctor seems to think it would be best to get a blanket approval, get him into the hospital and get specialists lined up to all see him and do what they want while he's there. It makes sense. And, its the kind of aggressive treatment we've argued he was lacking all along in fostercare.

Its just the suddeness of getting him and 6 siblings, including one nursling, ready for this so quickly is more than a bit overwhelming. He does not have schoolwork to do while there. Turns out, the school system wants us to enroll him after the hospital stay. Which wouldn't matter anyway. He's only in kindergarten, in special education and his schooling to date has been a joke. (One of his stated major educational goals for this year is to potty train.)

 

[TestifyToLove]

We actually expected they were going to want to hospitalize him soon after homecoming, we just thought in terms of a couple of months and his doctor thought in terms of a couple of weeks. Well, actualy he thought in faster terms than that until he found out that he had to have a judge to sign off on sedation because legally we can consent to everything but sedation/anesthesia until we finalize the adoption in the fall.
<br />
<br />So far, the plan is that DH will take the first week off and stay in the hospital with M. I'll stay home with the other kids that week and we'll visit several times during the week, with one night we can swap off so Dh can actually sleep. The second week, MIL is flying down and I'll stay with him in the hospital, which means so will the nursling.
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<br />Dh is thinking if he's released early, he'll get some time to meet and play with his grandmother, or she can fly home early if she would prefer (yeah right, already got off work and a paid trip down to see her 7 grandkids, I'm guessing she'll choose to stick around and socialize with them).
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<br />As Dh mentioned, both the pulmo and the RT heard stuff in his lungs, and after they ran a chest X-ray they got more aggressive in getting this set-up, so I'm guessing they saw stuff too. In addition, he supposedly colonized for PA a year ago but that is in question. First, we don't have the labs. Second, according to the old pulmo, the first culture came back positive and the second (2 days later and without antibiotics) came back negative. The only response given then was to start Tobi, nothing more. And, he's never had ACTs in his life. No one has bothered. And, he's so unaccustomed to them its nearly impossible for us to do them manually. We're waiting for his vest to get here to start that.
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<br />Otherwise, since he is still legally a fosterkid and since anything requiring sedation does require the approval of a judge in California, his doctor seems to think it would be best to get a blanket approval, get him into the hospital and get specialists lined up to all see him and do what they want while he's there. It makes sense. And, its the kind of aggressive treatment we've argued he was lacking all along in fostercare.
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<br />Its just the suddeness of getting him and 6 siblings, including one nursling, ready for this so quickly is more than a bit overwhelming. He does not have schoolwork to do while there. Turns out, the school system wants us to enroll him after the hospital stay. Which wouldn't matter anyway. He's only in kindergarten, in special education and his schooling to date has been a joke. (One of his stated major educational goals for this year is to potty train.)