Here it is:
Laynson Lim - CCHS Patient - DESPARATELY NEEDING HELP
From: Laura Wan
Sent: Wednesday, August 01, 2012 1:18 AM
To: Brenda Steed
Cc: CJ Lim
Subject: Laynson Lim - CCHS Patient - DESPARATELY NEEDING HELP
Sent: Wednesday, August 01, 2012 1:18 AM
To: Brenda Steed
Cc: CJ Lim
Subject: Laynson Lim - CCHS Patient - DESPARATELY NEEDING HELP
Hi Dr Gelfand: This is Laura, Laynson's mom. My family met up with you end of June after we found out that Laynson has CCHS.
We called you a little over a week ago as we were not happy that our son is not given a rate at that time causing his CO2 to spike to the 80s. You talked to Dr Moore and finally he was given a rate of 20 with other different settings, it was July 22nd then.
Today, it's August 1st, my son's CO2 is still at 40-50s awake and 60-80s asleep. I am really upset because I remember that you specifically told us in the meeting before we left the room that the CCHS kids are preferred to be kept at 35 CO2. Yes, I understand that it is not perfect and that he won't get a Co2 of 35 all the time, and I do agree that if we can keep him at 35-45, it will be great but not at 40-80s.
For 2 weeks now, we are at a high CO2.... he sleeps most of the time and yes, to the nurses, he's a "GOOD" baby because he doesn't wake up much. We notice that if his CO2 is high, he sleeps a lot, he's 3 months old and he should be more awake.
I talked to several CCHS mom on the forum and they all manage to keep their kids at 35-45s... I am very frustrated and I feel that each time I talk to the nurse practitioners, they would give me reasons that they are ok with his CO2s being in this range of 40-80s. We are on the Trilogy now and I talked to several parents and they told me that they prefer the LTVs on infant rather than the Trilogy. His Co2 was in the 20s to 40s when he was on the LTV even at 0 Rate but once we changed to the Trilogy, a few days later, we just didn't do good and my problem is at the rate of 20 versus now 40 awake, 50 asleep, we are still looking at the same Co2. This DOES NOT make sense to me at all. I am not a nurse, not a doctor and deinfitely not a pro in any ventilators but when I look at a the numbers, 20 rate versus 50 rate, I would assume that his CO2 should be a lot better at the rate of 50 but no.... it's the same.
The last pulm that I know that saw him was Dr Sanchez, I need someone to help me get him changed to the LTV and help us lower his Co2. I spend my time reading, talking to not only to Shelley but other parents out there and I have a lot more knowledge today then I had a month ago and definitely understand that my baby shouldn't be having such high CO2 for so long.
Besides that, I am not sure why there is a strong foul smell from his trach, yes, I agree that it doesn't look too bad but the smell is just horrible. He also have a lot more secretions and they are yellowish.
Dr Gelfand, I feel powerless and helpless right now as I feel that I cannot help my baby. It's not that i am saying that the nurse practitioners and the neonatologist are not doing their job nor am I saying that they are not good but I just feel that we are not going anywhere. We are back to square one with his respitory status. All the reasons given are just no longer acceptable to me if his numbers are this high.
Please help us with his vent changed back to LTV for me to just try out again as I rather much prefer to try something else than to just keep on sitting at a 40-80s Co2. The ONLY reason why I trach him is because I needed him to be ventilated properly to ENSURE that it will not affect his brain development. I was told by them that it's ok to have high CO2, it wouldn't affect his brain development, but I have heard that chances that he would have a seizure and potentially fall into a coma if his CO2 is high, which he did on May 21st, he had a seizure with the high CO2. When I brought this point out, I was told that he wouldn't at this rate... so, I asked, tell me a number but they couldn't tell me a number too, which I understand, different people will react differently to different situation BUT do I have to wait for him to have a seizure and worse case, do I wait till he falls into a coma before I know the number? Today, his CO2 on the T-Com rised up to 128 from 70 within 1 hour. They claim that the T-Com is not correct, I asked for a gas but didn't get one. Yes, an hour later, he is setting at closer to 70s but that's double of what I was told the "ideal" number is.
Please help us out. We really need someone to do something for us, I have no choice but to get your email from Shelley as I needed to stand up for Laynson and make sure that he is going to get better. We will be having a care conference on Friday with pulm, GI and the neonatologist, I was told that Dr Cannon will be the pulm in the meeting and I was told that on Friday at 3pm is when we can discuss about changing the vent. I really would like them to change it right away and do not want to wait for Friday. If anything happens to Laynson, who is responsible? I have come this far, I do not want anything to happen to my baby, I cannot afford to.
Regards,
Laura
We called you a little over a week ago as we were not happy that our son is not given a rate at that time causing his CO2 to spike to the 80s. You talked to Dr Moore and finally he was given a rate of 20 with other different settings, it was July 22nd then.
Today, it's August 1st, my son's CO2 is still at 40-50s awake and 60-80s asleep. I am really upset because I remember that you specifically told us in the meeting before we left the room that the CCHS kids are preferred to be kept at 35 CO2. Yes, I understand that it is not perfect and that he won't get a Co2 of 35 all the time, and I do agree that if we can keep him at 35-45, it will be great but not at 40-80s.
For 2 weeks now, we are at a high CO2.... he sleeps most of the time and yes, to the nurses, he's a "GOOD" baby because he doesn't wake up much. We notice that if his CO2 is high, he sleeps a lot, he's 3 months old and he should be more awake.
I talked to several CCHS mom on the forum and they all manage to keep their kids at 35-45s... I am very frustrated and I feel that each time I talk to the nurse practitioners, they would give me reasons that they are ok with his CO2s being in this range of 40-80s. We are on the Trilogy now and I talked to several parents and they told me that they prefer the LTVs on infant rather than the Trilogy. His Co2 was in the 20s to 40s when he was on the LTV even at 0 Rate but once we changed to the Trilogy, a few days later, we just didn't do good and my problem is at the rate of 20 versus now 40 awake, 50 asleep, we are still looking at the same Co2. This DOES NOT make sense to me at all. I am not a nurse, not a doctor and deinfitely not a pro in any ventilators but when I look at a the numbers, 20 rate versus 50 rate, I would assume that his CO2 should be a lot better at the rate of 50 but no.... it's the same.
The last pulm that I know that saw him was Dr Sanchez, I need someone to help me get him changed to the LTV and help us lower his Co2. I spend my time reading, talking to not only to Shelley but other parents out there and I have a lot more knowledge today then I had a month ago and definitely understand that my baby shouldn't be having such high CO2 for so long.
Besides that, I am not sure why there is a strong foul smell from his trach, yes, I agree that it doesn't look too bad but the smell is just horrible. He also have a lot more secretions and they are yellowish.
Dr Gelfand, I feel powerless and helpless right now as I feel that I cannot help my baby. It's not that i am saying that the nurse practitioners and the neonatologist are not doing their job nor am I saying that they are not good but I just feel that we are not going anywhere. We are back to square one with his respitory status. All the reasons given are just no longer acceptable to me if his numbers are this high.
Please help us with his vent changed back to LTV for me to just try out again as I rather much prefer to try something else than to just keep on sitting at a 40-80s Co2. The ONLY reason why I trach him is because I needed him to be ventilated properly to ENSURE that it will not affect his brain development. I was told by them that it's ok to have high CO2, it wouldn't affect his brain development, but I have heard that chances that he would have a seizure and potentially fall into a coma if his CO2 is high, which he did on May 21st, he had a seizure with the high CO2. When I brought this point out, I was told that he wouldn't at this rate... so, I asked, tell me a number but they couldn't tell me a number too, which I understand, different people will react differently to different situation BUT do I have to wait for him to have a seizure and worse case, do I wait till he falls into a coma before I know the number? Today, his CO2 on the T-Com rised up to 128 from 70 within 1 hour. They claim that the T-Com is not correct, I asked for a gas but didn't get one. Yes, an hour later, he is setting at closer to 70s but that's double of what I was told the "ideal" number is.
Please help us out. We really need someone to do something for us, I have no choice but to get your email from Shelley as I needed to stand up for Laynson and make sure that he is going to get better. We will be having a care conference on Friday with pulm, GI and the neonatologist, I was told that Dr Cannon will be the pulm in the meeting and I was told that on Friday at 3pm is when we can discuss about changing the vent. I really would like them to change it right away and do not want to wait for Friday. If anything happens to Laynson, who is responsible? I have come this far, I do not want anything to happen to my baby, I cannot afford to.
Regards,
Laura
No comments:
Post a Comment