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Wednesday, July 28, 2010
Tuesday, July 27, 2010
Joshy's Things
Since Joshy's gathering, I guess I've been kind of numb, or rather, even more so than in the last 17 months. I'm positive there is an invisible wall up in front of me guarding me emotionally; Ive never been one to go from one extreme to another such as having periods where I am deliriously happy or depressingly sad, but I notice I'm at a fairly constant emotional state more than ever right now. So, I do laugh, and I do cry, but whatever emotional place I'm in, it doesn't stay that way long. I go straight back to the straight line; neither really happy or really sad.
There is no hurry to clear Joshy's things; I know that. Some things Ive been fine to deal with, like strangely, Jojo's clothes; they're gone or sorted. The car seat was removed from my car and given back to The Samuel Morris Foundation on the day of Joshy's service, and the shower chair and standing frame were returned the the rehab department at the hospital last week. But! His vitamins are still up in the cupboard, where I would bring them down of a night. The suction machine and nebuliser are in exactly the same place as they were. Joshy and Kane shared their room and I haven't been able to go in and spend any length of time in there. A couple of large wall decals have fallen off, but I haven't picked them up. All Kanes toys are still strewn all over the floor. Theres a pile of Kane's washing that Ive left on the floor because I haven't wanted to sort it into the drawers...
Tomorrow however, I will have to do it. Last weekend the kids and I chose and ordered some new bedroom furniture (for Kayla and Kane) and I need to make room for it to be delivered. And also the company who actually owns the bed Josh used are coming tomorrow...
There is no hurry to clear Joshy's things; I know that. Some things Ive been fine to deal with, like strangely, Jojo's clothes; they're gone or sorted. The car seat was removed from my car and given back to The Samuel Morris Foundation on the day of Joshy's service, and the shower chair and standing frame were returned the the rehab department at the hospital last week. But! His vitamins are still up in the cupboard, where I would bring them down of a night. The suction machine and nebuliser are in exactly the same place as they were. Joshy and Kane shared their room and I haven't been able to go in and spend any length of time in there. A couple of large wall decals have fallen off, but I haven't picked them up. All Kanes toys are still strewn all over the floor. Theres a pile of Kane's washing that Ive left on the floor because I haven't wanted to sort it into the drawers...
Tomorrow however, I will have to do it. Last weekend the kids and I chose and ordered some new bedroom furniture (for Kayla and Kane) and I need to make room for it to be delivered. And also the company who actually owns the bed Josh used are coming tomorrow...
Tuesday, July 13, 2010
Flowers
Its time for all the gorgeous wreaths and bunches of flowers we received last Friday to go. They're dying. They're not smelling too good. But Im putting it off.
Friday, July 9, 2010
Wednesday, July 7, 2010
How are you?
Isn't it funny how when we're out shopping or somewhere, and the attendant asks "How are you today?" and automatically we reply with "Not bad thanks" or "Fine. You?"
What I'm really feeling is that my heart is broken and what I really want to say that I feel like I'm now walking around with out an arm or something because a piece of me is now gone forever.
What I'm really feeling is that my heart is broken and what I really want to say that I feel like I'm now walking around with out an arm or something because a piece of me is now gone forever.
Thanksgiving Service
The service for Josh will be held this Friday 9th July.
Details will be in Thursday 8th July's edition of The Daily Telegraph (Sydney).
Details will be in Thursday 8th July's edition of The Daily Telegraph (Sydney).
Tuesday, July 6, 2010
Angel
Jojo had not been well all week; Monday night he was sleepy. We suctioned a little blood. Tuesday evening we took video of Josh's range (how much he could or couldn't bend etc) to send to ABR for an assessment of sorts and a further exercise plan. He was still sleepy and pale. Wednesday an appointment was made with the GP for Friday for Josh. By Thursday night he was still sleepy and pale, and cold...
Friday morning I was doing Josh's morning nebuliser meds, and checking in on him as usual among doing all the other usual morning things like getting kids ready for school. And one time when I went to check on him I knew immediately he wasn't with us anymore. I tried to rouse him, and laid my hand on his chest. But there was nothing. I called JF and he came within a couple of minutes. My eldest daughter had already left for school, but the other three could tell something wasn't right, and hung around the doorway, but did not to come in to the bedroom. I suggested we take Josh out of there since he shares with Kane, and lay him on his special lounge in the lounge room; somehow it occurred to me that Kane may have difficulty sleeping in the same room otherwise.
I called the ambulance who were also with us in a matter of minutes, and confirmed what we already knew...
...on Friday 2nd July, just after 8.10am, my Jojo - our brave strong cheeky Jojo who touched the lives of many - became an angel.
Friday morning I was doing Josh's morning nebuliser meds, and checking in on him as usual among doing all the other usual morning things like getting kids ready for school. And one time when I went to check on him I knew immediately he wasn't with us anymore. I tried to rouse him, and laid my hand on his chest. But there was nothing. I called JF and he came within a couple of minutes. My eldest daughter had already left for school, but the other three could tell something wasn't right, and hung around the doorway, but did not to come in to the bedroom. I suggested we take Josh out of there since he shares with Kane, and lay him on his special lounge in the lounge room; somehow it occurred to me that Kane may have difficulty sleeping in the same room otherwise.
I called the ambulance who were also with us in a matter of minutes, and confirmed what we already knew...
...on Friday 2nd July, just after 8.10am, my Jojo - our brave strong cheeky Jojo who touched the lives of many - became an angel.
Saturday, June 19, 2010
Services
We had a meeting with the Children's Hospital in Sydney on Tuesday to see if they would be able to offer or suggest any other procedure, drug, anything in addition to or instead of what Josh receives now through the hospital we attend.
In short, no. The rehab doctor mentioned one or two other drugs we could try to help with Joshy's high tone, and she also suggested we remain with the rehab department we're consulting with now, but perhaps request to change the head doctor. And that is what we'll do.
Now that Josh's arm has been given the all clear - it's been 9 weeks since it was broken - we're keen for him to return to school, and we met with the people involved in his care there on Thursday. Our main concern is how they move and position him, and that is their main concern too. In fact, Josh will not be allowed to return until those who care for him (at school) are shown by the physio exactly how to move, and handle him. Id left a message for someone from a particular community service to attend the meeting at the school, but no one came, and the physio is through this service too. The principle of the school called that service on our behalf and shook things up a little. The physio however can not advise on the management of Josh until medical notes are obtained about his bone structure and anything supporting that.
It all goes 'round in circles, and everyone needs something from someone else.
Things take so long to happen. At one meeting or discussion with someone, a suggestion may be given, and idea put forward, and then its forgotten about or not followed up, or that department needs to consult with another department before going ahead with something. It's frustrating.
One of the doctors we see every 3 months or so, is a paediatrician who basically oversees and coordinates a lot of who we see. I suggested that in future we include at those meetings a representative from the main departments involved in Josh's care at the time. We'd already had a consult with the paediatrician next week, and now, after obtaining her approval for this, in attendance should also be the doctor or his registrar we see for Joshy's bones, and the physiotherapist from the service. This hopefully will decrease at least some delay in moving hings along.
On Friday, because the school's principle had organised it, we had a meeting with the service and got to voice our frustrations over the lack of followup and support that we expected from them. Id requested companies I could call to hire special car seats I could use during the period Josh had his broken arm. I was given the name of one place. After Joshy's sleep study where it was determined his oxygen intake was low when he sleeps, I requested companies I could obtain oxygen concentrators from to use for a period of time. I never heard back. We understood that we would receive regular visits from the physios and OT's to advise how to move and position Josh, and other exercises we could do. How do we know that whatever we're doing is okay? Josh cant "sit" in his wheelchair now, and JF is constantly modifying it to suit. There has been "talk" of a new one, but nothing else.
I did have someone out a couple of months ago talking about equipment needed for Josh, and one thing I requested was some kind of all inclusive adjustable day bed / chair. When Josh is with me of an afternoon / night, apart from his bed, I either have him on the floor, lounge, or on a massage mat which is atop a sun lounge. All of these are not supportive. I don't know what's happening with this, so we mentioned that again at our meeting yesterday.
What if there is a better way? What if what we do is more harm than good? Is it okay if we break Josh, because no one else wants to touch him?
Its not that we expect things to be done for us. Its the lack of followup, communication between all involved, and the length of time things take. We are always chasing things up, making calls, sending off emails etc.
As someone once said to me, we really do have to be our own case manager.
In short, no. The rehab doctor mentioned one or two other drugs we could try to help with Joshy's high tone, and she also suggested we remain with the rehab department we're consulting with now, but perhaps request to change the head doctor. And that is what we'll do.
Now that Josh's arm has been given the all clear - it's been 9 weeks since it was broken - we're keen for him to return to school, and we met with the people involved in his care there on Thursday. Our main concern is how they move and position him, and that is their main concern too. In fact, Josh will not be allowed to return until those who care for him (at school) are shown by the physio exactly how to move, and handle him. Id left a message for someone from a particular community service to attend the meeting at the school, but no one came, and the physio is through this service too. The principle of the school called that service on our behalf and shook things up a little. The physio however can not advise on the management of Josh until medical notes are obtained about his bone structure and anything supporting that.
It all goes 'round in circles, and everyone needs something from someone else.
Things take so long to happen. At one meeting or discussion with someone, a suggestion may be given, and idea put forward, and then its forgotten about or not followed up, or that department needs to consult with another department before going ahead with something. It's frustrating.
One of the doctors we see every 3 months or so, is a paediatrician who basically oversees and coordinates a lot of who we see. I suggested that in future we include at those meetings a representative from the main departments involved in Josh's care at the time. We'd already had a consult with the paediatrician next week, and now, after obtaining her approval for this, in attendance should also be the doctor or his registrar we see for Joshy's bones, and the physiotherapist from the service. This hopefully will decrease at least some delay in moving hings along.
On Friday, because the school's principle had organised it, we had a meeting with the service and got to voice our frustrations over the lack of followup and support that we expected from them. Id requested companies I could call to hire special car seats I could use during the period Josh had his broken arm. I was given the name of one place. After Joshy's sleep study where it was determined his oxygen intake was low when he sleeps, I requested companies I could obtain oxygen concentrators from to use for a period of time. I never heard back. We understood that we would receive regular visits from the physios and OT's to advise how to move and position Josh, and other exercises we could do. How do we know that whatever we're doing is okay? Josh cant "sit" in his wheelchair now, and JF is constantly modifying it to suit. There has been "talk" of a new one, but nothing else.
I did have someone out a couple of months ago talking about equipment needed for Josh, and one thing I requested was some kind of all inclusive adjustable day bed / chair. When Josh is with me of an afternoon / night, apart from his bed, I either have him on the floor, lounge, or on a massage mat which is atop a sun lounge. All of these are not supportive. I don't know what's happening with this, so we mentioned that again at our meeting yesterday.
What if there is a better way? What if what we do is more harm than good? Is it okay if we break Josh, because no one else wants to touch him?
Its not that we expect things to be done for us. Its the lack of followup, communication between all involved, and the length of time things take. We are always chasing things up, making calls, sending off emails etc.
As someone once said to me, we really do have to be our own case manager.
Tuesday, June 8, 2010
Bone strengthening
Yesterday afternoon, Josh was admitted to the Surgical Ward for a calcium infusion. Of course there is an official name, but basically a drug is administered through an IV drip, taking about an hour. Calcium and other vitamins are given via his PEG a number of times over the next few days. His calcium levels are checked day 1, 3 and 5, and the remainder of his stay, about 3 days in total, is to watch for any side effects which usually include flu-like symptoms, headaches and nausea.
It's more than 24 hours since his IV transfusion was completed; so far there have been no obvious side effects. Josh has had an increase of secretions - in fact last night I was up to him about every hour - but this change was noted before any treatment was started yesterday.
Jojo is sleeping right now, but still "gurgly".
As is usual, JF stays with Josh during the day, so I spent some time moving more stuff over to the "new" house today.
Hoping Josh stays well, and sleeps better tonight; my eyeballs feel as though they're gonna popout! ;-)
It's more than 24 hours since his IV transfusion was completed; so far there have been no obvious side effects. Josh has had an increase of secretions - in fact last night I was up to him about every hour - but this change was noted before any treatment was started yesterday.
Jojo is sleeping right now, but still "gurgly".
As is usual, JF stays with Josh during the day, so I spent some time moving more stuff over to the "new" house today.
Hoping Josh stays well, and sleeps better tonight; my eyeballs feel as though they're gonna popout! ;-)
Friday, June 4, 2010
Keys
I picked up the keys today to our new place. The lease officially starts Monday, but I can start moving things over! Yay!
So when the kids have gone to their dads, I will spend the rest of the weekend cleaning...
So when the kids have gone to their dads, I will spend the rest of the weekend cleaning...
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