hi everyone...
great news for us...we were able to get out of hospital one day early...long story, but we were home as a family for the first time in 5 weeks yesterday arvo! dad and me went for a huge walk around royal park while mum sorted out all my medicine and packed our room...she even had to take the car to the hospital to pack all our stuff!
we had so much fun last night...i had my first taste of pizza (didnt mind the pineapple, and a bit of suck on the crust)..but the best part was eating mums vegies and home made custard again...YUMMO!
today i enjoyed a walk around cherry lake in altona while mum went shopping for all of us! (we got such a surprise that we could leave early, we didnt get a chance to restock the cupboards!) its also way cool to be hanging out in the lounge with the toys i havent seen for yonks! I also enjoyed a shower with dad again last night, and slept pretty well overall.
ive been flipping onto my tummy from the sitting position which is pretty hard work, especially with a belly as big as mine! but it definitely improves my ability to reach things, mum and dad reckon im very quick with my hands now!
im 11 months old today...very exciting and getting to be a big boy very quickly...
anyhoo..loves to everyone!
eli
xox
Thursday, August 28, 2008
Wednesday, August 27, 2008
a little ray of sunshine....
hi guys
eli here...we are still in hospital, cant believe that it will be a whole 5 weeks tomorrow...! Amazing...the time has gone pretty quickly really. Im getting very used to mum and dad being at my beck and call...will be interesting to see what i can try when we get home...speaking of 'home'...the drs confirmed i got a urinary tract infection over the weekend, and i have just finished my course of antibiotics (and hopefully my last for a while now!)...i finished the anti's that i had to have for the staf infection and vre on monday, but im still on the stuff for the cmv i have...im not sure how long i will be on that, but dr keith (who is looking after me while dr karin is away) said that i will only need to have one dose three times a week. It will probably go for 3 hours (by the time i get other fluid in me)...
today is going to be a huge day, we are hoping to get 'unconnected' by this arvo, and hopefully back to our north melbourne home tomorrow. Mum and dad reckon we might even be able to get around royal park for a walk this arvo after my sleep, so we will see how we go, and whether i can get unconnected in time!
i just want say on behalf of mum and dad a massive thanks to everyone who has supported us through this very long stint in hospital...for those that have popped in for coffee, to the many phone calls and messages to the little 'welfare packages'...they really have helped us through this stay in hospital...so thanks a MILLION!
we hope to catch up soon...
lots of luv and cuddles
eli
xox
eli here...we are still in hospital, cant believe that it will be a whole 5 weeks tomorrow...! Amazing...the time has gone pretty quickly really. Im getting very used to mum and dad being at my beck and call...will be interesting to see what i can try when we get home...speaking of 'home'...the drs confirmed i got a urinary tract infection over the weekend, and i have just finished my course of antibiotics (and hopefully my last for a while now!)...i finished the anti's that i had to have for the staf infection and vre on monday, but im still on the stuff for the cmv i have...im not sure how long i will be on that, but dr keith (who is looking after me while dr karin is away) said that i will only need to have one dose three times a week. It will probably go for 3 hours (by the time i get other fluid in me)...
today is going to be a huge day, we are hoping to get 'unconnected' by this arvo, and hopefully back to our north melbourne home tomorrow. Mum and dad reckon we might even be able to get around royal park for a walk this arvo after my sleep, so we will see how we go, and whether i can get unconnected in time!
i just want say on behalf of mum and dad a massive thanks to everyone who has supported us through this very long stint in hospital...for those that have popped in for coffee, to the many phone calls and messages to the little 'welfare packages'...they really have helped us through this stay in hospital...so thanks a MILLION!
we hope to catch up soon...
lots of luv and cuddles
eli
xox
Saturday, August 23, 2008
Another update
Hi everyone!
eli here..mum finally brought the computer into hospital so i could write and say hello. Mum has been doing a great job keeping everyone in the loop of whats been going on. As you all know, i have been pretty crook but im feeling much better now. thanks to everyone for the kisses and hugs too...they were ace and mum made sure i got EVERY one of them...
I have had 2 negatives for the cmv bug i have which is kinda cool. Monday will be a big day for all of us. I will be coming to the end of my antibiotics to deal with the VRE and staf infection i have, and the dr's will reassess my cmv results, so fingers crossed i get another negative on monday. The stuff im getting to fix the cmv is pretty potent, and i will be happy when i get off that. My platelets are still cruising on a fairly low number (10-20), but they wont give me a bag until i drop below 10. my bloods are holding nicely, but im still needing an infusion of magnesium occassionally and im still on oodles of medication. Im pretty proud of myself coz i take all my medicine pretty well, although some of it does taste yuk.
At the moment im watching lots of wiggles, reading my books and playing on the floor with mum and dad. We are hoping to head out of hospital next week if i stay well enough, but it will all depend on results, and we wont know that until monday. Even if i do get out, i think i will have to come back in 3 days a week morning and night to get an infusion of medicine for the cmv. Its a big pest to get rid of. One good thing is that my steroids have been decreased and are at a level that i was on just before i came back to hospital about 4 weeks ago. They were going to reduce it again yesterday but decided not to because i got a little bit of a rash again, so hopefully next week it will go down again. Im definitely not as hungry, and have just started loosing a bit of weight which is kinda cool coz my belly hurt because it was so big!
anyways, all we can think about is getting out of here...i cant believe we have been here for over 4 weeks. the first week or so flew because i was so sick. I really dont remember much, but am happy just playing for now.
Anyways, i best go, mums on my back to pick up my toys and go down for a sleep...she spoils all my fun!
Mum says to wish our great mates donna and mel a very happy birthday as well as my cousin BLAKE...we cant wait to get home so i can give you all big cuddles!
love to all and glad to see all your raindances working! Keep going!!!
luv and hugs
eli
xox
eli here..mum finally brought the computer into hospital so i could write and say hello. Mum has been doing a great job keeping everyone in the loop of whats been going on. As you all know, i have been pretty crook but im feeling much better now. thanks to everyone for the kisses and hugs too...they were ace and mum made sure i got EVERY one of them...
I have had 2 negatives for the cmv bug i have which is kinda cool. Monday will be a big day for all of us. I will be coming to the end of my antibiotics to deal with the VRE and staf infection i have, and the dr's will reassess my cmv results, so fingers crossed i get another negative on monday. The stuff im getting to fix the cmv is pretty potent, and i will be happy when i get off that. My platelets are still cruising on a fairly low number (10-20), but they wont give me a bag until i drop below 10. my bloods are holding nicely, but im still needing an infusion of magnesium occassionally and im still on oodles of medication. Im pretty proud of myself coz i take all my medicine pretty well, although some of it does taste yuk.
At the moment im watching lots of wiggles, reading my books and playing on the floor with mum and dad. We are hoping to head out of hospital next week if i stay well enough, but it will all depend on results, and we wont know that until monday. Even if i do get out, i think i will have to come back in 3 days a week morning and night to get an infusion of medicine for the cmv. Its a big pest to get rid of. One good thing is that my steroids have been decreased and are at a level that i was on just before i came back to hospital about 4 weeks ago. They were going to reduce it again yesterday but decided not to because i got a little bit of a rash again, so hopefully next week it will go down again. Im definitely not as hungry, and have just started loosing a bit of weight which is kinda cool coz my belly hurt because it was so big!
anyways, all we can think about is getting out of here...i cant believe we have been here for over 4 weeks. the first week or so flew because i was so sick. I really dont remember much, but am happy just playing for now.
Anyways, i best go, mums on my back to pick up my toys and go down for a sleep...she spoils all my fun!
Mum says to wish our great mates donna and mel a very happy birthday as well as my cousin BLAKE...we cant wait to get home so i can give you all big cuddles!
love to all and glad to see all your raindances working! Keep going!!!
luv and hugs
eli
xox
Tuesday, August 19, 2008
Some more pics for you
just me and my gorgeous cyclosporin eyebrows! - damn anti rejection drugs!!!
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my friends who visit me...i cant touch them though..hello to will and chad
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mum and todd wodbridge - long story but hugely exciting!
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A photo of our ninny watching over us!
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a special delivery from home - thanks aunty shell and karen!
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cousin leanne and aunty shell come to visit
A photo of our gorgeous pa...happy birthday poppo!
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a photo of me sitting on the 'big' chair...
Sunday, August 17, 2008
Our rollercoaster ride continues...
hi everyone...mum here
Eli is still in hospital with lots of stories to tell! Im sorry its been a while, but clearly, there has been lots going on.
Dr Steve visited us on friday and said that he thought he could finally explain eli's high pulse rate from earlier in the week. Apparently one of eli's cultures had grown a staf infection, so they started some anti's. Yesterday, the weekend dr came and said that some more information had come through which indicated that eli may also have another bug called VRE - some bug that is resistant to the antibiotic he was taking for the staf...so they swapped it to another stronger antibiotic and until the microbiology stuff comes back, we are in lockdown again as the VRE is classified as a pretty full on infectious bug...
so everyone that comes and goes has to gown up and wear gloves again. Kinda like being in transplant again really...what goes in doesnt really come back out! (unless your mum and dad thank goodness!)...we also have to keep pretty much to ourselves as well.
The integrity of the hickmans (his noodles) will be questioned this coming week, especially if it keeps growing cooties. He is still taking stuff for his CMV infection as well - we havent had a negative with that as yet. We are guessing that it will be compromised a bit now that he has the other two bugs.
We had the kidney experts come up on friday to see what they can do about his high blood pressure. They said they would keep an eye on it over the next 48 hours (weekend of course!!). Im guessing that monday (tomorrow) will be another full on day with lots of information flying around no doubt.
We have had to move rooms again (4 times in 3 and a half weeks!), because of the infectious disease rules, we have to have our own bathroom. We are in a pretty funky room...a double one so we have finally got a bed!
We are so lucky that eli has remained pretty well and apart from being woken through the night for observations, he is pretty much sleeping through the night which is a huge relief. He is still very patchy through the day, but most of the staff know not to bother us unless they absolutely have to . Much different to transplant where he wasnt sleeping very well day and night!
Eli is still very much pretty happy within himself which is fantastic and is making our stay in hospital much easier. His eating has backed right off and he is into yogo's!
his outie has now become an innie again!
we wont fib, we are getting tired, but managing ok. We are still very unsure when we will get out. Finding it a big challenge to keep positive at times, especially when we continue getting told we have bugs on board. The main thing is to keep eli as well and as happy as we possibly can. I guess its just important to keep our eyes on the big prize...a cure for our jmml. The rest as hard as it is to swallow, is probably just peripheral at this point in time. We just need to know that his new mojo is doing the best it can..
anyways...keep all those wonderful messages coming....its times like this we look at everything and it really does keep us going...
I would like to send a huge cheerio to our pa who celebrates his 81st birthday today...we love you pa...
there are a few birthdays this month, so happy birthday to you all and we will think of you...
best fly...
hugs and luv
mum, dad and eli
xox
Eli is still in hospital with lots of stories to tell! Im sorry its been a while, but clearly, there has been lots going on.
Dr Steve visited us on friday and said that he thought he could finally explain eli's high pulse rate from earlier in the week. Apparently one of eli's cultures had grown a staf infection, so they started some anti's. Yesterday, the weekend dr came and said that some more information had come through which indicated that eli may also have another bug called VRE - some bug that is resistant to the antibiotic he was taking for the staf...so they swapped it to another stronger antibiotic and until the microbiology stuff comes back, we are in lockdown again as the VRE is classified as a pretty full on infectious bug...
so everyone that comes and goes has to gown up and wear gloves again. Kinda like being in transplant again really...what goes in doesnt really come back out! (unless your mum and dad thank goodness!)...we also have to keep pretty much to ourselves as well.
The integrity of the hickmans (his noodles) will be questioned this coming week, especially if it keeps growing cooties. He is still taking stuff for his CMV infection as well - we havent had a negative with that as yet. We are guessing that it will be compromised a bit now that he has the other two bugs.
We had the kidney experts come up on friday to see what they can do about his high blood pressure. They said they would keep an eye on it over the next 48 hours (weekend of course!!). Im guessing that monday (tomorrow) will be another full on day with lots of information flying around no doubt.
We have had to move rooms again (4 times in 3 and a half weeks!), because of the infectious disease rules, we have to have our own bathroom. We are in a pretty funky room...a double one so we have finally got a bed!
We are so lucky that eli has remained pretty well and apart from being woken through the night for observations, he is pretty much sleeping through the night which is a huge relief. He is still very patchy through the day, but most of the staff know not to bother us unless they absolutely have to . Much different to transplant where he wasnt sleeping very well day and night!
Eli is still very much pretty happy within himself which is fantastic and is making our stay in hospital much easier. His eating has backed right off and he is into yogo's!
his outie has now become an innie again!
we wont fib, we are getting tired, but managing ok. We are still very unsure when we will get out. Finding it a big challenge to keep positive at times, especially when we continue getting told we have bugs on board. The main thing is to keep eli as well and as happy as we possibly can. I guess its just important to keep our eyes on the big prize...a cure for our jmml. The rest as hard as it is to swallow, is probably just peripheral at this point in time. We just need to know that his new mojo is doing the best it can..
anyways...keep all those wonderful messages coming....its times like this we look at everything and it really does keep us going...
I would like to send a huge cheerio to our pa who celebrates his 81st birthday today...we love you pa...
there are a few birthdays this month, so happy birthday to you all and we will think of you...
best fly...
hugs and luv
mum, dad and eli
xox
Wednesday, August 13, 2008
Its the 'roids!'
HI guys
mum here...eli has had a good day within himself...pretty happy and got lots of nice smiles.
No real test results have come back as yet...so we are pretty much playing the waiting game. Good thing is that his counts have dropped significantly and are sitting at around 18 for white cells and 14 for neutrophils. His chest xray didnt really show anything, and he is needing a bit of salt to his diet because his kidneys are leaching salt as a result of the medicine he is on for the CMV. He also had a finger prick to test blood sugar levels (bandaid stayed on all of 5 seconds!)...and that was ok-ish. Dr Steve dropped his roids down again today which is highly exciting...but we probably wont see another drop now til early next week.
Unfortunately his pulse remained 'stable' at between 160 and 180, so we are really really hoping that comes back to normal fairly soon. cant be good for him. We are also hoping his graft vs host disease will remain where it is for the time being to give his body a crack at the cmv. The next test for that is tomorrow so we will see how we go. We dont have our hopes up (considering the recent sign of infection)...but we are really hoping for a negative return in the next couple of weeks..we are starting to get a bit of cabin fever!
anyhoo...thats pretty much the news we have...just continue to 'suck it and see'..i cant believe the little fella turns 1 in around 6 weeks time...its bloody amazing..
so pretty much, the common line we are getting to answer our questions is 'its the steriods'...damn things they are...gives us belly aches, high blood pressure, high pulse rate, bad temper, massive diet, and interacts terribly with everything else it comes into contact with! Be glad to see the end of them! (but on the flip side, am completely understanding that it is keeping eli well)...
everything comes with a price!
anyhoo..love to everyone
mum, dad and eli
xox
mum here...eli has had a good day within himself...pretty happy and got lots of nice smiles.
No real test results have come back as yet...so we are pretty much playing the waiting game. Good thing is that his counts have dropped significantly and are sitting at around 18 for white cells and 14 for neutrophils. His chest xray didnt really show anything, and he is needing a bit of salt to his diet because his kidneys are leaching salt as a result of the medicine he is on for the CMV. He also had a finger prick to test blood sugar levels (bandaid stayed on all of 5 seconds!)...and that was ok-ish. Dr Steve dropped his roids down again today which is highly exciting...but we probably wont see another drop now til early next week.
Unfortunately his pulse remained 'stable' at between 160 and 180, so we are really really hoping that comes back to normal fairly soon. cant be good for him. We are also hoping his graft vs host disease will remain where it is for the time being to give his body a crack at the cmv. The next test for that is tomorrow so we will see how we go. We dont have our hopes up (considering the recent sign of infection)...but we are really hoping for a negative return in the next couple of weeks..we are starting to get a bit of cabin fever!
anyhoo...thats pretty much the news we have...just continue to 'suck it and see'..i cant believe the little fella turns 1 in around 6 weeks time...its bloody amazing..
so pretty much, the common line we are getting to answer our questions is 'its the steriods'...damn things they are...gives us belly aches, high blood pressure, high pulse rate, bad temper, massive diet, and interacts terribly with everything else it comes into contact with! Be glad to see the end of them! (but on the flip side, am completely understanding that it is keeping eli well)...
everything comes with a price!
anyhoo..love to everyone
mum, dad and eli
xox
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Tuesday, August 12, 2008
A small update
Hi everyone...
eli still in hospital, and we are definitely experiencing a big rollercoaster ride...
Eli was pretty yuk yesterday, with a fair bit of grizzling and a couple of tantrums (thanks to glennys for the tigger...its definitely a tanty buster!!)...eli loves it!
today he was much better within himself, although his pulse jumped up to between 160-180 again (over it now!!), and his bp remained pretty high...so the dr's ordered another ECG which didnt show too much.
Unfortunately, eli's white cell counts and neutrophills have skyrocketed to 38 and 32 respectively which is indicating something is going pear shaped again. Dr Karin is on leave at the moment, so Dr Keith (another transplant guru) reckons it may be yet another infection although the difficulty in this is that he hasnt had a fever at all. So, basically they need to discount infection with more blood cultures and a chest xray to rule out cooties like pneumonia. If they dont find anything, it means that they will need to look again at his leukeamia perhaps having returned or 'relapse'. Pete and i are both hopeful that it is an infection of some sort and can be helped with more antibiotics, but we have another 24-48hours before we will know anything. On the up side, as i said, eli has been really good today within himself, its just that the fact that his counts are so high which is now a new major concern for us.
Anyhoo...best fly and get to bed...
luv to all
mum, dad and eli
xox
eli still in hospital, and we are definitely experiencing a big rollercoaster ride...
Eli was pretty yuk yesterday, with a fair bit of grizzling and a couple of tantrums (thanks to glennys for the tigger...its definitely a tanty buster!!)...eli loves it!
today he was much better within himself, although his pulse jumped up to between 160-180 again (over it now!!), and his bp remained pretty high...so the dr's ordered another ECG which didnt show too much.
Unfortunately, eli's white cell counts and neutrophills have skyrocketed to 38 and 32 respectively which is indicating something is going pear shaped again. Dr Karin is on leave at the moment, so Dr Keith (another transplant guru) reckons it may be yet another infection although the difficulty in this is that he hasnt had a fever at all. So, basically they need to discount infection with more blood cultures and a chest xray to rule out cooties like pneumonia. If they dont find anything, it means that they will need to look again at his leukeamia perhaps having returned or 'relapse'. Pete and i are both hopeful that it is an infection of some sort and can be helped with more antibiotics, but we have another 24-48hours before we will know anything. On the up side, as i said, eli has been really good today within himself, its just that the fact that his counts are so high which is now a new major concern for us.
Anyhoo...best fly and get to bed...
luv to all
mum, dad and eli
xox
Sunday, August 10, 2008
some more piccies
mums idea of making tummy time fun....
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....still fun (NOT!!)
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Nothing that a reward of biccies and cheese wont fix!
Me and dad chilling out
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me and Dr Hem...i really liked him cause he played with me everytime he came to see me. Hem was also the one to pick up my CMV so YAY to him...mum reckons i could pass off as hems baby because of my eyebrows! I can sort of see the similiarities!!! Thanks to the cyclosporin, i will continue to grow a monobrow and mum reckons my moustache rivals gibbos!!
a visit from home
hi guys
its mum again...yep, the little fella is still tucked up in hospital working on getting better...almost 2 and a half weeks now. The good thing is that we are not experiencing the difficulty of eli not sleeping at night which is a huge relief...he has been doing really well overnight and getting plenty of rest. Wamma and pete however are still plagued by nappy changes, obs and alarms, so apparently if they can get 3-4 hours a night, they are doing well. I wont fib, we are all very weary, but we are keeping positive and hoping we will be out soon. I guess as each day passes, its a good thing as we are one closer in getting home...
Eli is doing reasonably well. His BP is still quite high so they have upped his bp medicine to being more regular. The Dr's are also continuing to taper his roids which is really good, so he is feeling a bit better every day. It continues to be a fine line however, with Dr's trying to control the graft vs host disease enough so he doesnt get sick, but also trying to taper his roids and other meds to help him get his little body back into the swing of fighting infections - enter the CMV.
We are waiting for monday which is when they will take some blood to work out whether the antibiotic is working or not. He has been on it over a week and we are hoping like crazy we can get at least one negative...as long as we keep getting positive results, we are resigned to being in hospital. Its a real catch 22, but i guess in the circumstances, we are all holding up pretty well. wamma leaves this week, and it is with an extremely heavy heart. She has been absolutely fantastic and slotted into our family extremely well. We are hoping we can be home (in nth melb) sooner rather than later to get our lives back on track.
Eli's 8th tooth has popped through...no rest for the wicked! he is still eating a huge amount of food (puts me to shame!)...on average he will have about 4 packets of le snak biccies, 3 yogos, 5 cans of veg/meat, 2 tuna and biccies, a dixie cup and 3 feeds of breastmilk a day...
his poor little belly is HUGE and it has to be uncomfortable for him. What goes in must come out...and i think one of the quotes of the week came from me when i said "geez, his poo actually smells HUMAN'....hmmmm...a weak blonde moment, and it cracked everyone up...me thinks its going to be one of those things they wont let me forget!
anyways...i hope you enjoy the photos...i havent taken heaps, particularly when he was so ill...they will be our memories to keep i think...
we also got a visit from home and got some boxes of goodies from all the gang at the bairnsdale office. Again we are so humbled, and i cant wait to share it all with hubby and eli...so from us to you...thanks so much.
I was saying to one of the nurses earlier this week that it really is the 1%'ers that help us so much. I know it must be boring or frustrating, but for all of you who have helped with food, getting stuff from the supermarket, doing toy runs and the list goes on, it is those things that have helped us look after eli the best we can. Its an amazing feeling to be able to pick up the phone and ask a mate to do a nappy run for us and have them there without any pressure. Looking after pete and i allows us to give eli 110% and i think it shows. Its so hard to bring a baby up in a hospital room and keep him challenged and stimulated. Unfortunately we cant walk the ward anymore, and we are pretty much confined to a room - much like transplant. But we also know that its short term pain for long term gain, although we would like to have it hurry up a bit cause we are all impatient...
anyhoo, i guess we are just so grateful to you all for everything you have done for us - all of you...and are just so happy to have you in our lives.
Also, before i forget, we would like to again thank the gippsland grammar school for their continued support and kind words that filter through..i will try and get in touch this week sometime to fill you in.
best fly now...hospital duty calls.
with love to you all
mum, dad and eli
xox
its mum again...yep, the little fella is still tucked up in hospital working on getting better...almost 2 and a half weeks now. The good thing is that we are not experiencing the difficulty of eli not sleeping at night which is a huge relief...he has been doing really well overnight and getting plenty of rest. Wamma and pete however are still plagued by nappy changes, obs and alarms, so apparently if they can get 3-4 hours a night, they are doing well. I wont fib, we are all very weary, but we are keeping positive and hoping we will be out soon. I guess as each day passes, its a good thing as we are one closer in getting home...
Eli is doing reasonably well. His BP is still quite high so they have upped his bp medicine to being more regular. The Dr's are also continuing to taper his roids which is really good, so he is feeling a bit better every day. It continues to be a fine line however, with Dr's trying to control the graft vs host disease enough so he doesnt get sick, but also trying to taper his roids and other meds to help him get his little body back into the swing of fighting infections - enter the CMV.
We are waiting for monday which is when they will take some blood to work out whether the antibiotic is working or not. He has been on it over a week and we are hoping like crazy we can get at least one negative...as long as we keep getting positive results, we are resigned to being in hospital. Its a real catch 22, but i guess in the circumstances, we are all holding up pretty well. wamma leaves this week, and it is with an extremely heavy heart. She has been absolutely fantastic and slotted into our family extremely well. We are hoping we can be home (in nth melb) sooner rather than later to get our lives back on track.
Eli's 8th tooth has popped through...no rest for the wicked! he is still eating a huge amount of food (puts me to shame!)...on average he will have about 4 packets of le snak biccies, 3 yogos, 5 cans of veg/meat, 2 tuna and biccies, a dixie cup and 3 feeds of breastmilk a day...
his poor little belly is HUGE and it has to be uncomfortable for him. What goes in must come out...and i think one of the quotes of the week came from me when i said "geez, his poo actually smells HUMAN'....hmmmm...a weak blonde moment, and it cracked everyone up...me thinks its going to be one of those things they wont let me forget!
anyways...i hope you enjoy the photos...i havent taken heaps, particularly when he was so ill...they will be our memories to keep i think...
we also got a visit from home and got some boxes of goodies from all the gang at the bairnsdale office. Again we are so humbled, and i cant wait to share it all with hubby and eli...so from us to you...thanks so much.
I was saying to one of the nurses earlier this week that it really is the 1%'ers that help us so much. I know it must be boring or frustrating, but for all of you who have helped with food, getting stuff from the supermarket, doing toy runs and the list goes on, it is those things that have helped us look after eli the best we can. Its an amazing feeling to be able to pick up the phone and ask a mate to do a nappy run for us and have them there without any pressure. Looking after pete and i allows us to give eli 110% and i think it shows. Its so hard to bring a baby up in a hospital room and keep him challenged and stimulated. Unfortunately we cant walk the ward anymore, and we are pretty much confined to a room - much like transplant. But we also know that its short term pain for long term gain, although we would like to have it hurry up a bit cause we are all impatient...
anyhoo, i guess we are just so grateful to you all for everything you have done for us - all of you...and are just so happy to have you in our lives.
Also, before i forget, we would like to again thank the gippsland grammar school for their continued support and kind words that filter through..i will try and get in touch this week sometime to fill you in.
best fly now...hospital duty calls.
with love to you all
mum, dad and eli
xox
Tuesday, August 5, 2008
a couple of pics
I cant find any food...give me ANYTHING!!
Ahh, found some...for now
Please mum...feed me!!
pics were taken a couple of days ago...
Update for Eli
Hi there
mum here...bubs is still in hospital soaking up all the attention from the nurses...cheeky bugger.
He is very much back to himself, although one of the issues we do have is the amount of steriods he is on...they are contributing to a baby that is extremly temperamental and hungry ALL the time...i think he chewed through almost 900grams of food today. Absolutely amazing and we are finding it difficult to keep up...he is weighing in at around 10.5kg which is very good, considering he went up to 11.2kg at the height of his illness...he was sooo puffy poor bugger.
So yeah...when he laughs, he lights up our world...but when he cracks it, boy, we all run for cover!!!
Im going to instigate some physio for him to try and keep him moving and a play therapist to help me keep a hospital room exciting...
eli's first test for CMV came back positive which is a bummer and means that we will be in hospital for another 2 weeks at least...the tests are done every monday and thursday and we need at least 2 negative tests. The offside of the new medicine he is getting is that it can have an impact on his new marrow. We have been told to expect his counts to drop. To combat the counts decreasing, it looks like he may need to have the needle in his leg again to spur the new counts on. We are not too sure, but i guess that it really is up to eli! We were also told that cmv can hang around for MONTHS - YIKES...so we need all fingers and toes crossed to get rid of it...bloody thing it is...he is showing no ill effects from it at all which is good.
Other good news is that eli is only a couple of days of finishing off his round of antibiotics. It feels like it has gone forever..but will mean that 1 infusion every 6 hours and 1 every 24 hours will go...in a nutshell, not so many alarms going off!
Wamma has been absolutely fantastic and has started sharing the night shift with pete, so everyone is getting plenty of rest...the third person is a huge help and wamma has slotted into our families weird ways of living (including the wonderful hospital environment) really really well. Its a real credit to her, and has given us more time to rest...
anyhoo...thats about it from the simpsons...hope you guys are all well and keep the messages coming...
love to all
mum, dad and eli
xox
mum here...bubs is still in hospital soaking up all the attention from the nurses...cheeky bugger.
He is very much back to himself, although one of the issues we do have is the amount of steriods he is on...they are contributing to a baby that is extremly temperamental and hungry ALL the time...i think he chewed through almost 900grams of food today. Absolutely amazing and we are finding it difficult to keep up...he is weighing in at around 10.5kg which is very good, considering he went up to 11.2kg at the height of his illness...he was sooo puffy poor bugger.
So yeah...when he laughs, he lights up our world...but when he cracks it, boy, we all run for cover!!!
Im going to instigate some physio for him to try and keep him moving and a play therapist to help me keep a hospital room exciting...
eli's first test for CMV came back positive which is a bummer and means that we will be in hospital for another 2 weeks at least...the tests are done every monday and thursday and we need at least 2 negative tests. The offside of the new medicine he is getting is that it can have an impact on his new marrow. We have been told to expect his counts to drop. To combat the counts decreasing, it looks like he may need to have the needle in his leg again to spur the new counts on. We are not too sure, but i guess that it really is up to eli! We were also told that cmv can hang around for MONTHS - YIKES...so we need all fingers and toes crossed to get rid of it...bloody thing it is...he is showing no ill effects from it at all which is good.
Other good news is that eli is only a couple of days of finishing off his round of antibiotics. It feels like it has gone forever..but will mean that 1 infusion every 6 hours and 1 every 24 hours will go...in a nutshell, not so many alarms going off!
Wamma has been absolutely fantastic and has started sharing the night shift with pete, so everyone is getting plenty of rest...the third person is a huge help and wamma has slotted into our families weird ways of living (including the wonderful hospital environment) really really well. Its a real credit to her, and has given us more time to rest...
anyhoo...thats about it from the simpsons...hope you guys are all well and keep the messages coming...
love to all
mum, dad and eli
xox
Friday, August 1, 2008
More about Eli
HI there
mum here..eli is still in hospital being eli... :-)
Eli has improved heaps and is eating like a trojan and cant get enough of boobs (i feel like im feeding a newborn again - ouch!...a newborn with teeth..double ouch!)
We had some more interesting news that eli has no picked up a virus called 'cmv'...its a herpes virus that is basically everywhere and is quite easily picked up by people with suppressed immune systems and is not uncommon in transplant kids. So he has started on another type of antibiotic which will help clear the virus from his system and is likely to be on it for as long as the thing is in his system. We are extremely lucky it was picked up in his bloods and it was not left unchecked as it can be quite a nasty cootie to have.
So we still have a few days of antibiotics to run with the septic stuff, and he is on a huge amount of steroids (with the attitude to go with it)...he is also growing 'cyclosporin eyebrows and moustache' which will stay with him until he goes off the cyclosporin! Makes little tackers hairy and they look kinda funny!
he is all blown up because of the roids, but i must say, it is an awesome feeling to know that he is on the way up after being so very very ill. Like i keep saying, he still has a very long road to travel and we can only just take one day at a time..kinda like a footy game really!
anyhoo...we will do our best to keep you updated.
love and hugs
mum, dad and eli
xox
mum here..eli is still in hospital being eli... :-)
Eli has improved heaps and is eating like a trojan and cant get enough of boobs (i feel like im feeding a newborn again - ouch!...a newborn with teeth..double ouch!)
We had some more interesting news that eli has no picked up a virus called 'cmv'...its a herpes virus that is basically everywhere and is quite easily picked up by people with suppressed immune systems and is not uncommon in transplant kids. So he has started on another type of antibiotic which will help clear the virus from his system and is likely to be on it for as long as the thing is in his system. We are extremely lucky it was picked up in his bloods and it was not left unchecked as it can be quite a nasty cootie to have.
So we still have a few days of antibiotics to run with the septic stuff, and he is on a huge amount of steroids (with the attitude to go with it)...he is also growing 'cyclosporin eyebrows and moustache' which will stay with him until he goes off the cyclosporin! Makes little tackers hairy and they look kinda funny!
he is all blown up because of the roids, but i must say, it is an awesome feeling to know that he is on the way up after being so very very ill. Like i keep saying, he still has a very long road to travel and we can only just take one day at a time..kinda like a footy game really!
anyhoo...we will do our best to keep you updated.
love and hugs
mum, dad and eli
xox
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