Harrison came home Monday just gone - he still has his wobbly boots on and his eyes are very shaky at the moment, but he is eating walking around and talking up a storm as per usual.
I enrolled Sterling in soccer today and am looking forward to going to days watching him play. Harrison's discharge summary said his lymphocyte count was 2.2. Now I hope this is truly the case as I can take Harrison (on not too cold and rainy days) to soccer to watch Sterling play and this will make it that much more fun and family oriented.
I decided to start looking at houses to buy - little ones that I can do improvements to, so that I can have a secure and steady home for Harrison with his eyesight and for Marlie, Sterling and Ella to have a family home, as time goes by.
The good news is that Harrison is home, seems stable and relatively unscathed and that life is moving along nicely right now. It is less than 2 weeks til Harrison turns two, and I am trying to get together a slide show of pictures from day dot to age 2, I see an amazing change and I hope you will too.. to be continued,
Saturday, February 21, 2009
Saturday, February 14, 2009
Update
Harrison has been moved to a standard Iso room, and has dropped off one antibiotic, so this is good, but the bad news is that he started vomiting tonight, as we have been force feeding him liquids in an effort to get his gut going again.
If this force feedng doesn't work, we will have to put in - and for the very first time- a nasal gastric tube to get some fluids and nutrition into him. I sincerely hope this is not an option we have to take up.
He has diarrhoea still, which is not good, and he is still very sleepy but is having more periods of wakefulness so I am hopeful he will recover soon. Mum has switched places with me tonight to give me a break and I really needed some time with the kids as I knew they were getting very anxious.
I had a lovely visit from my work friends yesterday - thanks for the cupcakes - they were a major part of my dinner and coping with blood tests being done!! :) And thanks to Donna, Jodie, Joanne and Nicola for keeping me sane with calls and sms messages checking how things are going.. also Nicola and Dave added Marlie , Sterling and Ella to their 3 last night and had them stay over while I was with Harrison and Mum worked. The kids really enjoyed the time away and were so excited telling me about staying there, again my thanks to Nicola and Dave for this.
Scott has called up each day to ask after Harrison and check on his progress.
Harrison is having a lot of difficulty having his blood being taken, as no central line means they have to take the bloods in the normal way, thru a vein. I remember as a baby how much trouble we had taking his blood this way, and a few months ago the line stuffed up and we had the same trouble taking bloods "peripherally" ( Via a vein). In the last 2 days he has had 2 tests taken to check his levels as things are very all over the place at the moment and some of his levels are very low. It has taken 8 attempts to get enough blood to be able to test. That is 8 separate goes at various veins. If you are horrified at this - imagine being there each and every time to hold him down screaming to have them done. In the end last night I very nearly cried as they finally hit a vein that gave just enough to test with. One doctor suggested he was a candidate for having a new central line or like put back in to enable bloods to be done.
God forbid this should happen, and I have to admit this kind of rocked me. I left the room post testing last night at nearly 8.30pm, had a coffee, cried my eyes out for a few minutes and went back with a more positive "can do" attitude to all this. I know it has to be done, and I know the only way to truly monitor him is to have regular blood testing done, but it makes me sick when they come in , again, to try again for more. The poor darling is sick enough, let alone this.
I have to hope that his veins are so poor due to the gastric bug, and that he is dehydrated, as opposed to him just having shitty veins. I have no idea how we will get the bigger tests done if this is the case and he doesn't have some sort of line or port put back in. But lines mean infections and we start the vicious cycle again. I tell you I am about in tears writing this, but I need to write it down and wipe my slate clean.
Also the ongoing virus of this gastric bug has meant his weight has dropped 800 grams in less than a week. He started to gain weight back yesterday and was 14.64 kg. Today he weighed in at a paltry 14.04 kg. At least he tried eating apples, so hopefully the pectin in it will help his but settle. Mum said he vomited tonight though after trying him on some neocate formula. This stuff is very elemental, so he should have tolerated it. Oh well, looks like we'll be in hospital a while yet - until at least he picks up and starts eating and drinking.
This one's not a very positive blog, but it is the truth and sometimes its good to read the bad - gives a better overall picture of what is going on.
Also the fact that I feel guilty for starting back at work and asking to make it 4 days per week as of this week , but then totally being unable to even go to work. I really thought that Harrison was past all this and so would never have committed to work knowing otherwise. I guess that is the way the cookie crumbles and another week off work- luckily with a very understanding boss. Again thanks.. :)
I will update on him again as things go - hopefully with better news than this one.
If this force feedng doesn't work, we will have to put in - and for the very first time- a nasal gastric tube to get some fluids and nutrition into him. I sincerely hope this is not an option we have to take up.
He has diarrhoea still, which is not good, and he is still very sleepy but is having more periods of wakefulness so I am hopeful he will recover soon. Mum has switched places with me tonight to give me a break and I really needed some time with the kids as I knew they were getting very anxious.
I had a lovely visit from my work friends yesterday - thanks for the cupcakes - they were a major part of my dinner and coping with blood tests being done!! :) And thanks to Donna, Jodie, Joanne and Nicola for keeping me sane with calls and sms messages checking how things are going.. also Nicola and Dave added Marlie , Sterling and Ella to their 3 last night and had them stay over while I was with Harrison and Mum worked. The kids really enjoyed the time away and were so excited telling me about staying there, again my thanks to Nicola and Dave for this.
Scott has called up each day to ask after Harrison and check on his progress.
Harrison is having a lot of difficulty having his blood being taken, as no central line means they have to take the bloods in the normal way, thru a vein. I remember as a baby how much trouble we had taking his blood this way, and a few months ago the line stuffed up and we had the same trouble taking bloods "peripherally" ( Via a vein). In the last 2 days he has had 2 tests taken to check his levels as things are very all over the place at the moment and some of his levels are very low. It has taken 8 attempts to get enough blood to be able to test. That is 8 separate goes at various veins. If you are horrified at this - imagine being there each and every time to hold him down screaming to have them done. In the end last night I very nearly cried as they finally hit a vein that gave just enough to test with. One doctor suggested he was a candidate for having a new central line or like put back in to enable bloods to be done.
God forbid this should happen, and I have to admit this kind of rocked me. I left the room post testing last night at nearly 8.30pm, had a coffee, cried my eyes out for a few minutes and went back with a more positive "can do" attitude to all this. I know it has to be done, and I know the only way to truly monitor him is to have regular blood testing done, but it makes me sick when they come in , again, to try again for more. The poor darling is sick enough, let alone this.
I have to hope that his veins are so poor due to the gastric bug, and that he is dehydrated, as opposed to him just having shitty veins. I have no idea how we will get the bigger tests done if this is the case and he doesn't have some sort of line or port put back in. But lines mean infections and we start the vicious cycle again. I tell you I am about in tears writing this, but I need to write it down and wipe my slate clean.
Also the ongoing virus of this gastric bug has meant his weight has dropped 800 grams in less than a week. He started to gain weight back yesterday and was 14.64 kg. Today he weighed in at a paltry 14.04 kg. At least he tried eating apples, so hopefully the pectin in it will help his but settle. Mum said he vomited tonight though after trying him on some neocate formula. This stuff is very elemental, so he should have tolerated it. Oh well, looks like we'll be in hospital a while yet - until at least he picks up and starts eating and drinking.
This one's not a very positive blog, but it is the truth and sometimes its good to read the bad - gives a better overall picture of what is going on.
Also the fact that I feel guilty for starting back at work and asking to make it 4 days per week as of this week , but then totally being unable to even go to work. I really thought that Harrison was past all this and so would never have committed to work knowing otherwise. I guess that is the way the cookie crumbles and another week off work- luckily with a very understanding boss. Again thanks.. :)
I will update on him again as things go - hopefully with better news than this one.
Thursday, February 12, 2009
Back in hospital again ...
Its now 12 Feb 09 and Harrison has been here for 4 days with a central line infection and a really hasty gastro bug. He had his line removed on 11th feb- never to be replaced!!!
What a milestone - here is a picture commemorating the day of removal..
He looks very puffy in his face and he is very very sick - in fact he has been under high observation due to spiking temperatures and having had a febrile convulsion. This was probably the scariest thing I have ever seen - he has a huge spike in temp and went from 35 degrees to 40.4 degrees, his eyes rolled back in his head, he convulsed and stopped breathing. At first I knew he was seizing so was ok to start with , but he stopped breathing and by the 30 second mark i was really panicking - and then suddenly he stopped moving and took a massive breath, and settled down. I will never forget it though, and I realise now why they are so damned dangerous.
After that they transferred him to a high observation unit on the Children's ward at Gosford as they had to 24 hours a day monitor him to ensure that he didn't do it again. Mum has run herself stupid looking after Marlie, Sterling and Ella while I am here, and all the while managing to still work and keep the house immaculate! I still have a few lessons to learn from her - but without her and Jodie - my day care mum I would have been struggling.
The house Scott and I owned and lived in together has been sold and settles on 23rd March- which makes everything finalised with the financial aspect of our relationship and the child arrangements are yet to work out. He doesn't see the kids overly much and this is disappointing but at the same time it must be difficult to not come home and see the kids every day. I guess this is the way life goes. Some days are better than others and you can either go with it and just keep going or let it get the better of you - and I choose to just go with it - why sweat the small stuff ..
Harrison today has been moved from the high obs unit to a single Isolation room until he returns to being well - high central line was removed - with a little diffculty and a few extra nicks on his skin to get it out without tearing his skin. But it is goneand he will be so much better for it . At least it is one less source of infection for him . This infection is called psuedomonas. A respitory infection but was in his lines, and hwen they hooked up the IV that is why he had the spike in temp and the convulsions. They call it a septic shower - as the bug goes directly into the bool stream and vein near the heart so the reaction to the bug is almost instant - and very scary . HE does seem better today havng had the line out - and his gastric bug - Adenovirus is also responsible for chest infections too.. So they are being doubly cautious with him to ensure that these two bugs don't hit his chest area. So far, so good!
I have a few pics of him line free, and in hospital. We are watching him closely and it was a near thing him going into intensive care - simply that they had the available staff to put him on kids ward and not have to go to intensive care, the only other time I have seen him this sick though, is when he was a tiny baby and ultra sick.
I admit now even to myself that I held my breath this time hoping he wouldn't go backward, and his blood counts are all over the place and his platelets are very low and his blood protein too - so I am stll crossing everything that he improves quickly as I hate seeing his little body so ravaged with pain and him constantly sleeping as he's too sick to do anything else.
For now we wait - and a move to a standard isolation room is hopefully a step in the right direction.
Harrison in emergency this was post convulsion when we were moved to the resus bay in case he fitted again.
Harrison post surgery - LOOK NO LINE!!!!!
Today Harrison has been the most awake he has been for 4 days - he has not eaten a thing for the same amount of time - but he had his first bath with no line in today - a picture speaks a thousand words....
Also I got an email from my friend Narelle in Singapore and her daughter Ella who has SCID too, had her line taken out the other day also .. Ella and Harrison seem to do things in pairs - so a huge congratuations to Ella on another milestone, and it looks like her BMT was very successful as she has nearly completely normal blood counts for everything . I hope Ella's good counts begin to rub off on Harrison - but only tme will tell...
I will update in 48 hours how Harrison is going - as I find this quite therapeutic and stress relieving to write - it means I can allay my concerns here and stay positive in teh room with him.
Ella in hospital with her bad infection and second picture, you can see her cheek and jaw padded post surgical drainage. She is pictured with my nephew Seth - what a chunky 7 months old baby he is !
What a milestone - here is a picture commemorating the day of removal..
He looks very puffy in his face and he is very very sick - in fact he has been under high observation due to spiking temperatures and having had a febrile convulsion. This was probably the scariest thing I have ever seen - he has a huge spike in temp and went from 35 degrees to 40.4 degrees, his eyes rolled back in his head, he convulsed and stopped breathing. At first I knew he was seizing so was ok to start with , but he stopped breathing and by the 30 second mark i was really panicking - and then suddenly he stopped moving and took a massive breath, and settled down. I will never forget it though, and I realise now why they are so damned dangerous.After that they transferred him to a high observation unit on the Children's ward at Gosford as they had to 24 hours a day monitor him to ensure that he didn't do it again. Mum has run herself stupid looking after Marlie, Sterling and Ella while I am here, and all the while managing to still work and keep the house immaculate! I still have a few lessons to learn from her - but without her and Jodie - my day care mum I would have been struggling.
The house Scott and I owned and lived in together has been sold and settles on 23rd March- which makes everything finalised with the financial aspect of our relationship and the child arrangements are yet to work out. He doesn't see the kids overly much and this is disappointing but at the same time it must be difficult to not come home and see the kids every day. I guess this is the way life goes. Some days are better than others and you can either go with it and just keep going or let it get the better of you - and I choose to just go with it - why sweat the small stuff ..
Harrison today has been moved from the high obs unit to a single Isolation room until he returns to being well - high central line was removed - with a little diffculty and a few extra nicks on his skin to get it out without tearing his skin. But it is goneand he will be so much better for it . At least it is one less source of infection for him . This infection is called psuedomonas. A respitory infection but was in his lines, and hwen they hooked up the IV that is why he had the spike in temp and the convulsions. They call it a septic shower - as the bug goes directly into the bool stream and vein near the heart so the reaction to the bug is almost instant - and very scary . HE does seem better today havng had the line out - and his gastric bug - Adenovirus is also responsible for chest infections too.. So they are being doubly cautious with him to ensure that these two bugs don't hit his chest area. So far, so good!
I have a few pics of him line free, and in hospital. We are watching him closely and it was a near thing him going into intensive care - simply that they had the available staff to put him on kids ward and not have to go to intensive care, the only other time I have seen him this sick though, is when he was a tiny baby and ultra sick.
I admit now even to myself that I held my breath this time hoping he wouldn't go backward, and his blood counts are all over the place and his platelets are very low and his blood protein too - so I am stll crossing everything that he improves quickly as I hate seeing his little body so ravaged with pain and him constantly sleeping as he's too sick to do anything else.
For now we wait - and a move to a standard isolation room is hopefully a step in the right direction.
Harrison in emergency this was post convulsion when we were moved to the resus bay in case he fitted again.
Harrison post surgery - LOOK NO LINE!!!!!Today Harrison has been the most awake he has been for 4 days - he has not eaten a thing for the same amount of time - but he had his first bath with no line in today - a picture speaks a thousand words....
Also I got an email from my friend Narelle in Singapore and her daughter Ella who has SCID too, had her line taken out the other day also .. Ella and Harrison seem to do things in pairs - so a huge congratuations to Ella on another milestone, and it looks like her BMT was very successful as she has nearly completely normal blood counts for everything . I hope Ella's good counts begin to rub off on Harrison - but only tme will tell...I will update in 48 hours how Harrison is going - as I find this quite therapeutic and stress relieving to write - it means I can allay my concerns here and stay positive in teh room with him.
Ella in hospital with her bad infection and second picture, you can see her cheek and jaw padded post surgical drainage. She is pictured with my nephew Seth - what a chunky 7 months old baby he is !
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