Paul from Australia
09-22-2009, 06:43 AM
G'day everyone.
Today (Tuesday 22nd September) at 2.15 pm, Grant made a successful landing at home ;)
He is extremely stable; temperature normal; breathing fine; tonic/clonics next to non-existent :). He has successfully munched on two meals via the PEG at the rate of half a syringe fulll every 5 minutes. No vomiting or anything like that at all. He is very alert. The only negative thing is that he has Keppra anxiety, but we believe God will deal with that.
This morning my prayer was very simple. 'Lord use me as you will today. I don't have any plans whatsoever. Please lead me by Your Holy Spirit. I ask this in Jesus' name. Amen.'
So off we tootled to pick up the champ in the champmobile. Alison was able to come on this wonderful pickup journey.
Alison dropped me off at the entrance and I decided to see if the VNS prof was in today, because if she was, we were going to get her a box of chocolates. I wandered down to the neuro clinic. The prof is away for 3 weeks (probably on holidays caring for her children, as it is school holidays now). WHAMMO, ZAP. CAPOW :) Who should I immediately see in the corridor opposite the physio deparment, but none other than the ex-head children's physio, Joan (not her real name). She has known Grant for 19 years! In fact she was the second professional to see Grant the first time he was admitted to hospital. 'Boring. What's the big deal with that Paul? You always bump into medical staff. Cut out the chatter and get to the point, otherwise we will look at another post. C'mon man. All this waffle. Get to the point, otherwise we're off. You are too wordy Paul. Repeat too wordy. And if you didn't get it, too wordy. Get some lessons in reducing the verbiage. How about some precis writing lessons. We can give you some links if you like.' I can hear you thinking to yourself :)
Well the point is that Christine no longer works at the hospital. She now works at the Children's hospital doing special research. She hasn't been to Grant's hospital for yonks! It is possible that we will never see her again! This clearly was God's leading that I should bump into her.
Because I know her so well, I went straight up to her, held her hand and kissed it! (She didn't whack me one, so that was okay, and I am here to tell the tale :)) Haven't done that before, but she has been fantastic with Grant over all these years. (She has a disabled daughter in a wheelchair, so she is very compassionate as well as being very knowledgable).
I then quite boldly shared Grant's present hospitalisation, not holding back how extremely ill had had been as well as sharing that we had many people praying for Grant, etc, etc, etc. The seed was planted :) She said that now that we are coming into the warmer months, hopefully Grant won't have another bad episode. I left her wondering perhaps what I was talking about (the Christian bits), and I left knowing that this was a God-incidence :) God will now water the seed to His glory; nothing to do with me whatsoever.
I then went up to the ward and Alison arrived. We were very keen on getting Grant home ASAP. I disconnected Grant from his munching pump at 50 mls an hour and we got him dressed in some cool clobber. Although we could have immediately left the hospital immediately (the pharmicist arrived the moment we arrived and gave us all the meds etc. Normally it can take a few hours for pharmacy to put together all Grant's meds), Alison was concerned about Grant' ear. I don't think I have mentioned this. When Grant was in ICU and had tape around his face, his ear, just behind the earlobe was cut badly. So badly in fact that the ICU doctors called in a plastic surgeon to decide what to do! The cut didn't need a plastic surgeons skills,and something was done. Anyway, we wanted a doctor to give us the all clear about attending to Grant's ear. Not a big deal in the overall picture.
The ward doc came had a look at Grant's ear and chickened out. She got the neuro registrar to give the okay. So Grant had a neurological examination behind his ear ;) The ear is fine, we just have to keep it clean and dry for a while = no problemo.
Chris, the head nurse, said that Grant's respiratory specialist (Michael) phoned from downstairs and said that he would call in to see Grant before we left, to which I said to Chris, that we wanted to leave as soon as possible. I know I was a bit bold, but we were in a hurry to leave. We have been trying to see Michael since Grant arrived in hospital. Michael has also been trying to see Grant. When Grant was in ICU and I was in the waiting room, Michael popped his head in and said that he would see Grant soon, but it didn't happen until the very moment that we were about to leave the hospital.
Michael is remarkable in two, possibly three ways.
1. He is the senior respiratory specialist at the hospital, so he knows lungs :)
2. He is one of the most compassionate doctors we have come across, probably equal to the VNS prof.
Put 1 and 2 together and you have a great doctor!
Michael did turn up, and we really had a great time together. What I love about him is that he explains situations and Grant's respiratory situation so clearly, that even I can understand. He stayed for about half an hour = boy oh boy. He is the doc that put Grant on nocturnal oxygen. He needed to see Grant ASAP because the funding body for the nocturnal oxygen requires that a review be made once a year, and we are months over the review time.
Michael wants us for one month to put Grant on 1 litre of oxygen every evening, and report back to tell him what changes, if any, we notice. So that is our homework. He did say that Grant is probably the most complex seizure status patient that the hospital has, and this is one of the largest hospitals in the state. Boy oh boy, Grant is certainly a medical challenge when he gets himself into status. But of course God is watching over him.
Realising that this was definitely a God-incidence, I shared how we are Christians and many people had been praying for Grant and God had touched Grant powerfully. He nodded and smiled. During the earlier conversation he had mentioned God himself :) When he left, he said God bless.
3. Michael might be a Christian :)
Of course we were thrilled that Michael came up to the ward to see Grant. This means that we now do not have to make an appointment to see him at his clinic, because to do that would mean that we would probably have to wait another few months (Grant was booked in to see Michael last week at the clinic). I believe the meeting with Michael today was very much a God-incidence.
So, with the all clear, we chucked Grant in the wheelchair and chucked him in the Grantmobile and came home.
Rejoice in the Lord always, and again I say Rejoice. We will rejoice always, even when there are challenges.
Unfortunately Grant is having Keppra rage. You may remember that the first time Grant went on Keppra (about 8 years ago now), he had Keppra rage. We weren't told of this symptom, but it just so happened (God's direction for sure) that the following week we saw the VNS prof. She took one look at Grant (we hadn't told her about the Keppra) and asked what was wrong with him. We then told her that he had started Keppra and she said that Grant had to be weaned off the Keppra immediately.
We are now praying for the Lord's guidance regarding the Keppra. We cannot possibly continue the Keppra if Grant is going to remain this distressed. So we are praying that either the rage will dissapear (God's sovereign move), or we will need to wean Grant off the Keppra. He is now on 500mg daily, which I understand is your normal adult dosage. I have taken some video of Grant upset, because it becomes part of his testimony.
GRANT'S BOOK
I know I have carried on like a pork chop for some years now about putting Grant's story together and publishing it as a book. Well the time has come to get very serious indeed. So, you can quote me on this, we want to get his book completed within 3 months = has to be done. His testimony and our testimony of how he came into our lives is nothing short of incredible and full of God's leading and anointing. Keep me honest folks. The book must be completed withing 3 months.
SUMMARY
God is omnipotent, omniscient, and omnipresent (a bit of heavy theology for ya) :), Jesus is Lord and the Holy Spirit is leading me.
Grant was in hospital for 16 days and in ICU for 12! He has/had a major MRSI (is that right) staf infection, plus a UTI infection, plus major problems with the stridor after extubation, plus seizures completely out of control for about 6 days after intubation (somethins that has never happened before). This has been one of the most stressful admissions, when for a short period of time I thought this is it, Grant will go to heaven (an awesome thought), but the thought of losing him was simply too much and I was often overwhelmed at the idea trying to pray for his improvement, but still struggling with the possibily that Grant could die. God has been patient with me. I know openly and willingly (with the leading of the Holy Spirit, and with hopefully discernment), will share a little bit about God and Jesus and Grant's story, and then leave the rest up to the Lord.
Thank you for your continued prayers.
Don't forget the cyber kiddo hugs, and if you forget I might just get the next flight out to give a real physical hug to your precious kiddos!
Paul, Alison and Grant, in champ mode except for the Keppra, which is out of his control, but not God's
Ps. for the nurses out there Grant is on CIPROFLOXACIN (PROFLOXIN) antibiotic, which I understand is extremely powerful and potent, showing just how bad the infection has been, but I may be quite wrong in that assumption.
Today (Tuesday 22nd September) at 2.15 pm, Grant made a successful landing at home ;)
He is extremely stable; temperature normal; breathing fine; tonic/clonics next to non-existent :). He has successfully munched on two meals via the PEG at the rate of half a syringe fulll every 5 minutes. No vomiting or anything like that at all. He is very alert. The only negative thing is that he has Keppra anxiety, but we believe God will deal with that.
This morning my prayer was very simple. 'Lord use me as you will today. I don't have any plans whatsoever. Please lead me by Your Holy Spirit. I ask this in Jesus' name. Amen.'
So off we tootled to pick up the champ in the champmobile. Alison was able to come on this wonderful pickup journey.
Alison dropped me off at the entrance and I decided to see if the VNS prof was in today, because if she was, we were going to get her a box of chocolates. I wandered down to the neuro clinic. The prof is away for 3 weeks (probably on holidays caring for her children, as it is school holidays now). WHAMMO, ZAP. CAPOW :) Who should I immediately see in the corridor opposite the physio deparment, but none other than the ex-head children's physio, Joan (not her real name). She has known Grant for 19 years! In fact she was the second professional to see Grant the first time he was admitted to hospital. 'Boring. What's the big deal with that Paul? You always bump into medical staff. Cut out the chatter and get to the point, otherwise we will look at another post. C'mon man. All this waffle. Get to the point, otherwise we're off. You are too wordy Paul. Repeat too wordy. And if you didn't get it, too wordy. Get some lessons in reducing the verbiage. How about some precis writing lessons. We can give you some links if you like.' I can hear you thinking to yourself :)
Well the point is that Christine no longer works at the hospital. She now works at the Children's hospital doing special research. She hasn't been to Grant's hospital for yonks! It is possible that we will never see her again! This clearly was God's leading that I should bump into her.
Because I know her so well, I went straight up to her, held her hand and kissed it! (She didn't whack me one, so that was okay, and I am here to tell the tale :)) Haven't done that before, but she has been fantastic with Grant over all these years. (She has a disabled daughter in a wheelchair, so she is very compassionate as well as being very knowledgable).
I then quite boldly shared Grant's present hospitalisation, not holding back how extremely ill had had been as well as sharing that we had many people praying for Grant, etc, etc, etc. The seed was planted :) She said that now that we are coming into the warmer months, hopefully Grant won't have another bad episode. I left her wondering perhaps what I was talking about (the Christian bits), and I left knowing that this was a God-incidence :) God will now water the seed to His glory; nothing to do with me whatsoever.
I then went up to the ward and Alison arrived. We were very keen on getting Grant home ASAP. I disconnected Grant from his munching pump at 50 mls an hour and we got him dressed in some cool clobber. Although we could have immediately left the hospital immediately (the pharmicist arrived the moment we arrived and gave us all the meds etc. Normally it can take a few hours for pharmacy to put together all Grant's meds), Alison was concerned about Grant' ear. I don't think I have mentioned this. When Grant was in ICU and had tape around his face, his ear, just behind the earlobe was cut badly. So badly in fact that the ICU doctors called in a plastic surgeon to decide what to do! The cut didn't need a plastic surgeons skills,and something was done. Anyway, we wanted a doctor to give us the all clear about attending to Grant's ear. Not a big deal in the overall picture.
The ward doc came had a look at Grant's ear and chickened out. She got the neuro registrar to give the okay. So Grant had a neurological examination behind his ear ;) The ear is fine, we just have to keep it clean and dry for a while = no problemo.
Chris, the head nurse, said that Grant's respiratory specialist (Michael) phoned from downstairs and said that he would call in to see Grant before we left, to which I said to Chris, that we wanted to leave as soon as possible. I know I was a bit bold, but we were in a hurry to leave. We have been trying to see Michael since Grant arrived in hospital. Michael has also been trying to see Grant. When Grant was in ICU and I was in the waiting room, Michael popped his head in and said that he would see Grant soon, but it didn't happen until the very moment that we were about to leave the hospital.
Michael is remarkable in two, possibly three ways.
1. He is the senior respiratory specialist at the hospital, so he knows lungs :)
2. He is one of the most compassionate doctors we have come across, probably equal to the VNS prof.
Put 1 and 2 together and you have a great doctor!
Michael did turn up, and we really had a great time together. What I love about him is that he explains situations and Grant's respiratory situation so clearly, that even I can understand. He stayed for about half an hour = boy oh boy. He is the doc that put Grant on nocturnal oxygen. He needed to see Grant ASAP because the funding body for the nocturnal oxygen requires that a review be made once a year, and we are months over the review time.
Michael wants us for one month to put Grant on 1 litre of oxygen every evening, and report back to tell him what changes, if any, we notice. So that is our homework. He did say that Grant is probably the most complex seizure status patient that the hospital has, and this is one of the largest hospitals in the state. Boy oh boy, Grant is certainly a medical challenge when he gets himself into status. But of course God is watching over him.
Realising that this was definitely a God-incidence, I shared how we are Christians and many people had been praying for Grant and God had touched Grant powerfully. He nodded and smiled. During the earlier conversation he had mentioned God himself :) When he left, he said God bless.
3. Michael might be a Christian :)
Of course we were thrilled that Michael came up to the ward to see Grant. This means that we now do not have to make an appointment to see him at his clinic, because to do that would mean that we would probably have to wait another few months (Grant was booked in to see Michael last week at the clinic). I believe the meeting with Michael today was very much a God-incidence.
So, with the all clear, we chucked Grant in the wheelchair and chucked him in the Grantmobile and came home.
Rejoice in the Lord always, and again I say Rejoice. We will rejoice always, even when there are challenges.
Unfortunately Grant is having Keppra rage. You may remember that the first time Grant went on Keppra (about 8 years ago now), he had Keppra rage. We weren't told of this symptom, but it just so happened (God's direction for sure) that the following week we saw the VNS prof. She took one look at Grant (we hadn't told her about the Keppra) and asked what was wrong with him. We then told her that he had started Keppra and she said that Grant had to be weaned off the Keppra immediately.
We are now praying for the Lord's guidance regarding the Keppra. We cannot possibly continue the Keppra if Grant is going to remain this distressed. So we are praying that either the rage will dissapear (God's sovereign move), or we will need to wean Grant off the Keppra. He is now on 500mg daily, which I understand is your normal adult dosage. I have taken some video of Grant upset, because it becomes part of his testimony.
GRANT'S BOOK
I know I have carried on like a pork chop for some years now about putting Grant's story together and publishing it as a book. Well the time has come to get very serious indeed. So, you can quote me on this, we want to get his book completed within 3 months = has to be done. His testimony and our testimony of how he came into our lives is nothing short of incredible and full of God's leading and anointing. Keep me honest folks. The book must be completed withing 3 months.
SUMMARY
God is omnipotent, omniscient, and omnipresent (a bit of heavy theology for ya) :), Jesus is Lord and the Holy Spirit is leading me.
Grant was in hospital for 16 days and in ICU for 12! He has/had a major MRSI (is that right) staf infection, plus a UTI infection, plus major problems with the stridor after extubation, plus seizures completely out of control for about 6 days after intubation (somethins that has never happened before). This has been one of the most stressful admissions, when for a short period of time I thought this is it, Grant will go to heaven (an awesome thought), but the thought of losing him was simply too much and I was often overwhelmed at the idea trying to pray for his improvement, but still struggling with the possibily that Grant could die. God has been patient with me. I know openly and willingly (with the leading of the Holy Spirit, and with hopefully discernment), will share a little bit about God and Jesus and Grant's story, and then leave the rest up to the Lord.
Thank you for your continued prayers.
Don't forget the cyber kiddo hugs, and if you forget I might just get the next flight out to give a real physical hug to your precious kiddos!
Paul, Alison and Grant, in champ mode except for the Keppra, which is out of his control, but not God's
Ps. for the nurses out there Grant is on CIPROFLOXACIN (PROFLOXIN) antibiotic, which I understand is extremely powerful and potent, showing just how bad the infection has been, but I may be quite wrong in that assumption.