Paul from Australia
09-10-2009, 08:56 AM
Hello.
Thursday 10.20 pm.
Alison and I went to see Grant at about 3.pm today in ICU just after he came out of recovery.
His seizures are almost constant :mad:
He is not recognizing us at all :mad:
His breathing is somewhat laboured with heaving of the chest :mad:
He has a chest infection :mad: He is on a very strong antibiotic.
The stridor is quite apparent when he is seizing :mad:
He is being suctioned about every 15 minutes.
One of the doctors mentioned that Grant might have to be intubated again :mad: That would be a terrible backwards step.
He is on oxygen at 9 litres, which is quite high. The highest they can go with the current setup is 10 litres. I don't know if there is a process where they can give more oxygen. His oxygen stats when he has a seizure, come down to about 87%, which is not good. When he is not seizing his stats go up to about 97 - 100%, which is much better.
His pulse rate when he is seizing is about 130-145. When he is not seizing it comes down to about 115-120.
He does have a temperature of about 38. He has had Panadol.
He might possibly have a UTI because the urine is very bacteriash (SP). The docs think that this might be because of the catheter and not actually an infection. A request was made to remove the catheter at 5.pm. The catheter has not been removed yet.
I did request that he start feeding again. This was almost put in motion and I discussed a feeding plan with the ICU dietician. He was to start at 30mls an hour, but that has been quashed because of his delicate condition :(
PARALDEHYDE GIVEN BUT ONLY SHORT RELIEF
Believe it or not, I had to advise on treatment! I did suggest making a complete change from the midaz over to phenobarb, because the midaz is only giving very temporary relief. However the neuro registrar felt that Grant did get a big dose of phenobarb a few days back, and she is not happy going that route. (Some years back Grant was in a terrible state and given Phenobarb. Grant's VNS prof said that it may well have saved Grant's life!)
I told them to give a dose of Paraldehyde, which he got at 5.pm. The hospital did not have any in stock, but we of course had ours for them to use. The Paraldehyde did kick in after about 35 minutes. It did give Grant temporary relief for about 3/4 hour then the seizures came back. Ideally the Paraldehyde should knock him out for about 5 hours as it is a type of anaesthetic.
I have just phoned ICU as I want to see the seizure plan revised so
Grant can have Paraldehyde 3 times in a 24 hour period.
He can have midazolam when required.
He can have frisium twice in a day.
(He is still on Dialantin/Phenytoin)
I did speak to a doctor who is not the doctor in charge of Grant. She asked if I had medical training, to which I replied that I have been caring for Grant for 20 years and know him inside and out and have a fairly good idea of his seizure medication needs etc. She didn't want to make any drug changes. Grant's doctor is somewhere in the hospital. I have to phone back soon and hopefully get the doctor to agree to my request. We certainly don't want Grant to go on like this until the morning neuro rounds.
The midaz and frisium, being both benzos, may knock him out a bit, but something does need to be done to knock the seizures out good and proper.
THE ONLY POSITIVE BIT
Because Grant has a chest infection, the infection is most probably causing increased seizure activity. Hopefully as the antibiotic kicks in and the infection goes away, Grant's seizures will decline. Having the infection is aweful, but getting rid of it may help.
I will update again here as soon as I have spoken with the doctor.
Continued prayers needed. Thank you.
God bless and bye for now.
Paul, Alison and Grant
Thursday 10.20 pm.
Alison and I went to see Grant at about 3.pm today in ICU just after he came out of recovery.
His seizures are almost constant :mad:
He is not recognizing us at all :mad:
His breathing is somewhat laboured with heaving of the chest :mad:
He has a chest infection :mad: He is on a very strong antibiotic.
The stridor is quite apparent when he is seizing :mad:
He is being suctioned about every 15 minutes.
One of the doctors mentioned that Grant might have to be intubated again :mad: That would be a terrible backwards step.
He is on oxygen at 9 litres, which is quite high. The highest they can go with the current setup is 10 litres. I don't know if there is a process where they can give more oxygen. His oxygen stats when he has a seizure, come down to about 87%, which is not good. When he is not seizing his stats go up to about 97 - 100%, which is much better.
His pulse rate when he is seizing is about 130-145. When he is not seizing it comes down to about 115-120.
He does have a temperature of about 38. He has had Panadol.
He might possibly have a UTI because the urine is very bacteriash (SP). The docs think that this might be because of the catheter and not actually an infection. A request was made to remove the catheter at 5.pm. The catheter has not been removed yet.
I did request that he start feeding again. This was almost put in motion and I discussed a feeding plan with the ICU dietician. He was to start at 30mls an hour, but that has been quashed because of his delicate condition :(
PARALDEHYDE GIVEN BUT ONLY SHORT RELIEF
Believe it or not, I had to advise on treatment! I did suggest making a complete change from the midaz over to phenobarb, because the midaz is only giving very temporary relief. However the neuro registrar felt that Grant did get a big dose of phenobarb a few days back, and she is not happy going that route. (Some years back Grant was in a terrible state and given Phenobarb. Grant's VNS prof said that it may well have saved Grant's life!)
I told them to give a dose of Paraldehyde, which he got at 5.pm. The hospital did not have any in stock, but we of course had ours for them to use. The Paraldehyde did kick in after about 35 minutes. It did give Grant temporary relief for about 3/4 hour then the seizures came back. Ideally the Paraldehyde should knock him out for about 5 hours as it is a type of anaesthetic.
I have just phoned ICU as I want to see the seizure plan revised so
Grant can have Paraldehyde 3 times in a 24 hour period.
He can have midazolam when required.
He can have frisium twice in a day.
(He is still on Dialantin/Phenytoin)
I did speak to a doctor who is not the doctor in charge of Grant. She asked if I had medical training, to which I replied that I have been caring for Grant for 20 years and know him inside and out and have a fairly good idea of his seizure medication needs etc. She didn't want to make any drug changes. Grant's doctor is somewhere in the hospital. I have to phone back soon and hopefully get the doctor to agree to my request. We certainly don't want Grant to go on like this until the morning neuro rounds.
The midaz and frisium, being both benzos, may knock him out a bit, but something does need to be done to knock the seizures out good and proper.
THE ONLY POSITIVE BIT
Because Grant has a chest infection, the infection is most probably causing increased seizure activity. Hopefully as the antibiotic kicks in and the infection goes away, Grant's seizures will decline. Having the infection is aweful, but getting rid of it may help.
I will update again here as soon as I have spoken with the doctor.
Continued prayers needed. Thank you.
God bless and bye for now.
Paul, Alison and Grant