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Old 09-07-2009, 09:02 AM
Paul from Australia Paul from Australia is offline
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Exclamation Monday evening. Grant's ICU news. Some good some not so good.



I got to the hospital nice and early this morning. Early enough to have a great breakfast at the hospital consisting of omelette, fried onion, tomato. mushrooms, bacon, and a hash brown. Although I saw the manager Steve, and he would have given me a discount, I didn't ask for one as he has been so kind in the past.

I then checked in to the neuro department so that the VNS prof would know that Grant is in hospital. He sees her privately at the hospital and she doesn't officially visit wards, but shh, don't tell anyone, she will visit Grant tomorrow. Isn't that wonderful of her.

I then checked in with the senior ped sleep study specialist's secretary to see if a message could be passed on to her. I know Grant is not a kiddo, but the sleep specialist very kindly offered to keep track of Grant even when he became of age. I would like to challenge her again with trying to get Grant into some sort of nice sleep cycle.

I then spoke with the senior respiratory doc's secretary to see if he could pop in to see Grant as he needs to revaluate the need for Grant to continue with the nocturnal oxygen.

I then went and saw the PEG outreach nurse and talked her into giving me a couple of what we call umbilical feeding tubes (the big ones used for flushing the PEG), which we use for syringe feeding for Grant.

I then tootled up to ICU.

Grant woke up for me for a few minutes and then went back to sleep. He is absolutely zonked out because of all the meds that he has been on.

Fortunately Grant had been given the zofrin (sp) to stop any nausea because of the Midazolam.


I was under the impression that Grant was breathing on his own even with the intubation. But the nurse told me that Grant is only occassionally taking a breath on his own. The intubation level is the same level that they set for all ICU patients. That was dissapointing to hear.

I said that I wanted to speak with the neuro team and the nurse said that although the neuro team had already done their rounds they would come again in an hour or so. After an hour or so, I saw them wander by but not come and speak with me. I wondered if I had already scared them away However later on the neuro registrar did come and speak with me.

I stressed the absolute need (in our opinion) for Grant to be weaned off the Dialantin, as historically over the last 2 years it has had zero impact on either reducing the frequency of the tonic/clonics, or (which was the prime reason for going on the drug) to reduce the crisis hospital visits. I mentioned Grant's liver function not being marvelous and the fact that his B1, B6 and B12 are very high, which could all be related to liver and Dialantin.

I also pointed out that the new drug on the block, Keppra, may well be the guilty culprit much of Grant's vomiting. Another rare side effect is increased seizure activity = hmm!

I pressed my case as hard as possible. The neuro registrar took on board all that I offered. She did say that as Grant had presented in hospital in status, the neuro team would be very wary of sending him home on no medication, which in many respects from my point of view is the typical neuro response = if someone has seizures they must be on medication.

The neuro registrar did say that she had spoken with the VNS prof who would visit some time tomorrow. This is great because the prof knows our concerns for AED's, and although she might not allow Grant to stop the meds quickly, the hope is that she will allow him to wean. We have no problem with Grant coming home on a small dose of perhaps Phenobarb and being weaned off. He once did this without any problems.

EEG = hmm!

The prof had Grant have an eeg today. This is a bit strange, because when I asked her if he could have an eeg in February (Grant's last admission), she said that there was no benefit at all in him having an eeg, because we all knew what the eeg would show (Grant having NCSE). So, when I see her tomorrow I will ask why Grant had an eeg today.

I am not sure if the VNS voltage was checked, but it certainly will be before Grant goes home.


Grant has run a slight temperature most of today It peaked at 38.1, which although not a raging temperature at all, is still of a little concern. They put a line in (I am not sure if it was a PICA line) in case it was needed.

I have just spoken with the ICU nurse and she said that Grant's temperature has come down to 37.7, which is much better. They have taken cultures to search for any infections. However Grant's chest does sound very clear.


While I was in ICU, an announcement came over hospital loud speakers, (which would have been heard throughout the whole hospital. Would Grant C. . . . . . please phone extension 2411 immediately. Wow, I thought, this is cool. I thought that perhaps they got the wrong name and were in fact paging me to do my rounds as a voluntary neuro assistant allergy advisor. I quietly excused myself from the ICU ward, saying that I would be back in a few hours. I then secreted myself in one of the toilets and donned my white medical coat (actually a scientific gown), and put on my $2.00 shop stethascope. Looking the part, I wandered down to the children's ward to start my rounds. But then I woke up from my daydreaming and wishful thinking Yes, it is true that Grant had been paged on the hospital intercom. What happened (and this is true), was that the sleep study specialist had phoned the hospital from outside to say that she would be in the hospital tomorrow and call in to see Grant. How about that eh Pretty unreal I reckon.

Tomorrow I intend getting to the hospital extra early as the VNS prof could call in between the hours from to The sleep study specialist could also call in during those hours.


Grant is slowly improving. He is extremely drowsy. We want him extubated as soon as it can be done safely. We don't want him to have an infection. And we urgently want him to be immediately weaned off Keppra, and weaned off Dialantin.

Best wishes and seeya,

Paul, dissapointed at not getting the volunteers job , Alison, and Grant working hard to get back to champ mode.
Grant's story in pictures and music. A must see
Seeya there
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Old 09-07-2009, 11:15 AM
alizesmom alizesmom is offline
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Daydream away, you probably would do the kids some good. Give Grant some hugs from Ciara. Karen
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Old 09-07-2009, 11:21 AM
Denae Denae is offline
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Location: Winston-Salem, NC
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I like your dream, sounds like a good one to me actually. When Ri was there we had a nursing student come in and interview us for a paper she had to write and she joked that I should be a nurse, or a PA. At this point, I feel like Paul, you and I both should ask to take the neuro exam. I bet we could get quite a few of those questions correct!

((hugs)) and praying that Grant is extubated soon.
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Old 09-07-2009, 01:31 PM
Carly'sMa Carly'sMa is offline
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Sometimes I joke that I'm a lawyer that likes to play doctor and social worker.

Glad to hear that there is some improvement, but I'm concerned that he isn't breathing on his own.
[SIGPIC][/SIGPIC]Deborah, mom to Carly, 18, genetic problems (possibly) resulting in developmental disabilities and autistic tendencies, growth hormone deficiency; Jeremy, 16, terriffic kid; ,Manny, loveable golden retriever,2; and wife to Duane for 25 years
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