Wednesday, July 20, 2011
Lilly Bell Baby Blog
Lilly's blog now has a Facebook update, so know you can visit both websites and know whats going on, and can access Lilly Lane Kids Without Diagnosis from Lilly's Blog.
Monday, June 13, 2011
Lilly's Eye Test Results.
Lilly had her Retinogram and BrainEvoke Response Visual test this morning. Basically the findings are: There is evidence of degeneration in the light receptors in the Retina, which is worrying and will need following in the next year to watch for any changes. Her brain responses are almost normal to visual stimuli at the moment though which is good news, But the right side of her brain responds better than her left which suggests some asymetry in the development of her brain. This means she sees better with her left eye and coincides with the fact that she uses her left side more than her right side. She will need to be sedated or under GA to have her retinas investigated. She may be able to were glasses as it appears she can see larger objects as opposed to smaller ones. We have been referred to Can Do 4 Kids, an organisation which assists those with visual and or hearing impairments. Whoo lots to take in
Monday, June 6, 2011
May 2011 - PICU visit
Last post we were awaiting the PEG insertion. Well that was done , but from the minute it was done, lilly had problems tolerating the feeds. She would scream evry time the feed was on, then burp and vomit. After 10 days of this she developed a wheeze and was breathing really hard and fast. We took her to the LMH where she was treated for asthma? and given ventolin and oxygen. She continued to vomit and not improve at all, They couldnt hydrate her because they could not get a vein to give her IV fluids, even with an ultrasound to guide them. The doctors told us they were transferring her to the WCH in case she got worse, because she might need to go to intensive care. At this point i was worried but not too much, i mean it was just in case right?
On the 25 minute ambulance ride to the WCH, mu Lilly Bubba struggled to get a brreath and had practically stopped breathing when we reached the hopital. They raced her in to resus where i stood, watching them run around my baby, stick things into her all over, gave her an adrenaline shot to kickstart her breathing and bring up her heart rate, gave her ventolin, oxygen and other drugs to keep her breathing. It was like a dream..i knew it was happening but i didnt feel anything..numbness, shock, disbelief. My Nurse side kicked in and took over from my mum side i think so i could cope. Thank you nurse side!
She was admitted to the paediatric ICU and given ventolin and oxygen. Because her oxygen was so low she had a hypoxic seizure, and then hd trouble keeping her oxygen up, and was still breathing with such a struggle that thy ventilated her with CPAP. This is basically a mask, which seals over her nose and mouth, forces air in to her lungs and keeps her lungs inflated so she can breathe out and get rid of the Carbon dioxide that builds up. She was on this for 3 days. They put in a central Venous line in her femoral ( groin) artery for fluids and drugs. She was given antibiotics aswell. Her left lung had totally collapsed, and her lungs were filled with thick sticky mucous which was acting as superglue.
The docs are saying she had a virus which turned into a pnuemonia, testing positive for staph, so then turned bacterial. But she may have aspirated in to her lungs on her vomit or feed. They are not sure, so they are doing a Ph probe to test for reflux.
I am currently sitting in WCH now, while lilly undergoes Ph testing. It takes 24 hours after a tube with sensors is put down her nose into the oesophagus and measures the acidity of fluid coming up in to the throat. I have to press buttons on the recorder when she coughs, cries or vomits, or eats/drinks until 2pm tomorrow. She is doinfg much better now, off the oxygen, saturating well, happy and bubbly :) Except that she now has an infected and very sore peg site :( Darn hospitals! Three samples of hers tested positive to staph whilst in here that were clear before.
I have been in a daze, not able to think more than a few hours ahead of time. During all this i had to do a presentation for my TAFE course and i have another which i am supposed to be preparing for now instead of being on here! lol Cant wait to get her home again and settled. I am over this hospital stuff...yet again!
I am however ever so greatful and priveledged to have such a wonderful supportive family, bunch of friends and online community at Lilly Lane Kids Without Diagnosis xx
On the 25 minute ambulance ride to the WCH, mu Lilly Bubba struggled to get a brreath and had practically stopped breathing when we reached the hopital. They raced her in to resus where i stood, watching them run around my baby, stick things into her all over, gave her an adrenaline shot to kickstart her breathing and bring up her heart rate, gave her ventolin, oxygen and other drugs to keep her breathing. It was like a dream..i knew it was happening but i didnt feel anything..numbness, shock, disbelief. My Nurse side kicked in and took over from my mum side i think so i could cope. Thank you nurse side!
She was admitted to the paediatric ICU and given ventolin and oxygen. Because her oxygen was so low she had a hypoxic seizure, and then hd trouble keeping her oxygen up, and was still breathing with such a struggle that thy ventilated her with CPAP. This is basically a mask, which seals over her nose and mouth, forces air in to her lungs and keeps her lungs inflated so she can breathe out and get rid of the Carbon dioxide that builds up. She was on this for 3 days. They put in a central Venous line in her femoral ( groin) artery for fluids and drugs. She was given antibiotics aswell. Her left lung had totally collapsed, and her lungs were filled with thick sticky mucous which was acting as superglue.
The docs are saying she had a virus which turned into a pnuemonia, testing positive for staph, so then turned bacterial. But she may have aspirated in to her lungs on her vomit or feed. They are not sure, so they are doing a Ph probe to test for reflux.
I am currently sitting in WCH now, while lilly undergoes Ph testing. It takes 24 hours after a tube with sensors is put down her nose into the oesophagus and measures the acidity of fluid coming up in to the throat. I have to press buttons on the recorder when she coughs, cries or vomits, or eats/drinks until 2pm tomorrow. She is doinfg much better now, off the oxygen, saturating well, happy and bubbly :) Except that she now has an infected and very sore peg site :( Darn hospitals! Three samples of hers tested positive to staph whilst in here that were clear before.
I have been in a daze, not able to think more than a few hours ahead of time. During all this i had to do a presentation for my TAFE course and i have another which i am supposed to be preparing for now instead of being on here! lol Cant wait to get her home again and settled. I am over this hospital stuff...yet again!
Thursday, April 14, 2011
Thank you Giveaway!
In celebration of reaching 200 + Likers on my Page Lilly Lane-Kids without Diagnosis I am saying a big thank you and Giving Away a White Musk Heavenly Bag with thanks to Louise Warner from the Body Shop.
It contains White Musk Shower Gel and Body lotion60ml, White Musk soap, Shea Body butter and a Sisal wash cloth all in a convenient toiletry bag!
To be in the running simply visit my blog
http://lillybellbaby.blogspot.com
And leave a comment under this post stating why you deserve this "Pamper Pack" Each comment will be given a number in order of post, and a winner will be chosen randomly through Random.org. Winner will be notified via this Blog. Get your comments in by Friday 29th April!
This giveaway is soley the responsibility of Lilly Lane - Kids Without Diagnosis and Facebook or Blogspot are in no way affiliated with this giveaway. Winners will be chosen randomly using Random.Org engine and notified via this blog. If postage is required there will be a $6 postage charge. Sorry Australian Residents only. Entrants are required to leave a comment under this post stating why they deserve to win, be given a number in order of post and randomly chosen through Random.org. To post a comment entrant will need to sign in and follow this blog by creating a Google account or similar. Giveaway begins Friday 15th April 4:30pmACST and ends Friday April 29th at 9:00pmACST.
Louise Warner The Body Shop at Home : 0430 063 171 for home pampers parties to share with your friends! Free gift to the host and special goodies for your friends :)
It contains White Musk Shower Gel and Body lotion60ml, White Musk soap, Shea Body butter and a Sisal wash cloth all in a convenient toiletry bag!
To be in the running simply visit my blog
http://lillybellbaby.blogspot.com
And leave a comment under this post stating why you deserve this "Pamper Pack" Each comment will be given a number in order of post, and a winner will be chosen randomly through Random.org. Winner will be notified via this Blog. Get your comments in by Friday 29th April!
This giveaway is soley the responsibility of Lilly Lane - Kids Without Diagnosis and Facebook or Blogspot are in no way affiliated with this giveaway. Winners will be chosen randomly using Random.Org engine and notified via this blog. If postage is required there will be a $6 postage charge. Sorry Australian Residents only. Entrants are required to leave a comment under this post stating why they deserve to win, be given a number in order of post and randomly chosen through Random.org. To post a comment entrant will need to sign in and follow this blog by creating a Google account or similar. Giveaway begins Friday 15th April 4:30pmACST and ends Friday April 29th at 9:00pmACST.
Louise Warner The Body Shop at Home : 0430 063 171 for home pampers parties to share with your friends! Free gift to the host and special goodies for your friends :)
Tuesday, April 12, 2011
We have a Date!
We have a date for Lilly's Gastrostomy tube. 29th june in the morning. One night stay. Going to be a long two days! How do i feel? Well i watched the this is my button dvd given to me by Novita, and i cried and cried, does that sum it up?
I am anxious for her to get it done, and for it to be all over. For her to have a normal face without tape. For her to have a normal routine once it is in. For her to be more willing to try things orally without the NGT in the way.
I am also terrified, although in my career as a nurse i have looked after many kids with PEGS, this is my kid with a PEG! I am also saddened because it feels more final, even though it is reversible i cannot see in the future far enough to see it being reversed :(
We saw the metabolic doctors again. They said we are nearing the end of the list of possible tests and as we get closer the chance of getting an answer is more remote. We said we are prepared for the fact that we may not get an answer and that that does happen, but my heart is not prepared , it never will be, it will never rest.
They want to do a skin and muscle biopsy while she is under the anaesthetic having her Gastrostomy inserted. This will test for mitochondrial disorders and NCL disorders of which there are 9. Thay think they are likley tpo be normal but they however need to rule it out. They have also taken blood to extract more DNA and sent to the USA to a special gene research lab for testing in the hope thry might find some rare thing in the genes that is not tested for here. That will take months.
Lilly has a chest infection at the moment and is on Antibiotics so we are on watch again. Luckily her seizures have been minimal, one to two a week if that, just brief staring ones. The phenobarb is down to two mls, and she is much more alert, rolling over, trying to sit up, responding more. Her leg muscles are still stiff and she needs physio to loosen them. We are starting swimming classes with Novita in a few months time. We have a bath lifter and giraffe chair now which is making things so much easier. We need to keep her back straight because she slouches and is getting a curved spine.
Life is becoming more normal, i don't cry every time i hold her now, only sometimes. I don't know if my heart will ever stop breaking over and over again. I am enjoying her smiles, her responsivness, her laughter and her personality. There is a chance that she will go backwards and i do not want to miss anything she does before that happens.
So we wait. Wait for the peg. Wait for more results. Wait to see how she develops.
wait..wait..wait...
I am anxious for her to get it done, and for it to be all over. For her to have a normal face without tape. For her to have a normal routine once it is in. For her to be more willing to try things orally without the NGT in the way.
I am also terrified, although in my career as a nurse i have looked after many kids with PEGS, this is my kid with a PEG! I am also saddened because it feels more final, even though it is reversible i cannot see in the future far enough to see it being reversed :(
We saw the metabolic doctors again. They said we are nearing the end of the list of possible tests and as we get closer the chance of getting an answer is more remote. We said we are prepared for the fact that we may not get an answer and that that does happen, but my heart is not prepared , it never will be, it will never rest.
They want to do a skin and muscle biopsy while she is under the anaesthetic having her Gastrostomy inserted. This will test for mitochondrial disorders and NCL disorders of which there are 9. Thay think they are likley tpo be normal but they however need to rule it out. They have also taken blood to extract more DNA and sent to the USA to a special gene research lab for testing in the hope thry might find some rare thing in the genes that is not tested for here. That will take months.
Lilly has a chest infection at the moment and is on Antibiotics so we are on watch again. Luckily her seizures have been minimal, one to two a week if that, just brief staring ones. The phenobarb is down to two mls, and she is much more alert, rolling over, trying to sit up, responding more. Her leg muscles are still stiff and she needs physio to loosen them. We are starting swimming classes with Novita in a few months time. We have a bath lifter and giraffe chair now which is making things so much easier. We need to keep her back straight because she slouches and is getting a curved spine.
Life is becoming more normal, i don't cry every time i hold her now, only sometimes. I don't know if my heart will ever stop breaking over and over again. I am enjoying her smiles, her responsivness, her laughter and her personality. There is a chance that she will go backwards and i do not want to miss anything she does before that happens.
So we wait. Wait for the peg. Wait for more results. Wait to see how she develops.
wait..wait..wait...
Monday, February 28, 2011
Lilly Update 1
Hi, you may have noticed there has not been any blogs for a while..that is a good thing! It's because we took lilly home from hospital and luckily, praise the heavens she has not needed to go back! So here is where we are after nearly 3 months later....
Lilly had the rpt MRI of her brain in december, it showed delayed myelination ( the nerve coverings in the brain are not growing) and deterioration or grey matter. Loss of brain tissue and extra fluid around the brain. Not sure exactly what all that means other than there is a serious brain growth abnormality.
EEG, same as previous one so no new light there.
Chromosome 3 duplication ruled out as the cause as her dad has the same mutation and he is fine.
Bloods, metabolic tests etc so far all normal.
We have been weaning the medications and seeing a definate improvement in alertness and activity. The tegrotol, was 1st to go, followed by the peroxidine, then the keppra. On thursday we begin the 8 week process of weaning the phenobabr..GULP And then as planned she will only take the epilim.
She is rolling over on to her tummy now, gets stuck when she gets ther..lol so funny. She is lifting her head up more. Still unable to sit, and we have noticed a slight curvature in her spine due to her always slouching to the left. Novita ( disability support service) has supplied us with a giraffe chair which will help her sit in correct alignment.
she is grabbing at toys and things more and appears way more like a 6 month old now than a 3 month old..so i don't care what the MRI says i think she has potential!
She has had her 1st birthday and finally been christened, and she slept all through that! The docs think she might have an autosomal nerve disorder due to her "hibernation" like sleep, her temp, heart rate drops and she goes all pale and difficult to rouse. Some other mystery to add to the list.
Her VEP ( eye test) shows she can see, but dont know what or how much as there is a problem with the light receptors in the back of her eyes, which is likley to get worse over time, so she may not be able to see.
Awaiting more hearing tests, but we are sure her hearing is fine.
She is nasogastrically fed still, and since leaving hospital has been refusing anything orally, to the point that she screams if i try to put it in her mouth, so currently working on getting her to accept food/drink again. She still chokes/gags when i do manage to get some in.
She is on the waiting list for a gastrostomy tube, a tube that geos into the stomach through the tummy, for feeding, 6-8 weeks is the waiting list atm, as semi-urgent. Her feed regime changes on a weekly basis, so we just try hard to fit it in our routines etc.
Oh and i have a pole like in the hospital for her pump and feeds thanks to a dear friend :) Whose son passed last year from a similar problem as lilly's.
So there we are, still awaiting a diagnosis which may never come, knowing that it is a possibility our buba could get worse as she gets older, but no one really knows. Just focussing on the here and now, what she needs now, and what she can do know and has the potential to do!
Lilly had the rpt MRI of her brain in december, it showed delayed myelination ( the nerve coverings in the brain are not growing) and deterioration or grey matter. Loss of brain tissue and extra fluid around the brain. Not sure exactly what all that means other than there is a serious brain growth abnormality.
EEG, same as previous one so no new light there.
Chromosome 3 duplication ruled out as the cause as her dad has the same mutation and he is fine.
Bloods, metabolic tests etc so far all normal.
We have been weaning the medications and seeing a definate improvement in alertness and activity. The tegrotol, was 1st to go, followed by the peroxidine, then the keppra. On thursday we begin the 8 week process of weaning the phenobabr..GULP And then as planned she will only take the epilim.
She is rolling over on to her tummy now, gets stuck when she gets ther..lol so funny. She is lifting her head up more. Still unable to sit, and we have noticed a slight curvature in her spine due to her always slouching to the left. Novita ( disability support service) has supplied us with a giraffe chair which will help her sit in correct alignment.
she is grabbing at toys and things more and appears way more like a 6 month old now than a 3 month old..so i don't care what the MRI says i think she has potential!
She has had her 1st birthday and finally been christened, and she slept all through that! The docs think she might have an autosomal nerve disorder due to her "hibernation" like sleep, her temp, heart rate drops and she goes all pale and difficult to rouse. Some other mystery to add to the list.
Her VEP ( eye test) shows she can see, but dont know what or how much as there is a problem with the light receptors in the back of her eyes, which is likley to get worse over time, so she may not be able to see.
Awaiting more hearing tests, but we are sure her hearing is fine.
She is nasogastrically fed still, and since leaving hospital has been refusing anything orally, to the point that she screams if i try to put it in her mouth, so currently working on getting her to accept food/drink again. She still chokes/gags when i do manage to get some in.
She is on the waiting list for a gastrostomy tube, a tube that geos into the stomach through the tummy, for feeding, 6-8 weeks is the waiting list atm, as semi-urgent. Her feed regime changes on a weekly basis, so we just try hard to fit it in our routines etc.
Oh and i have a pole like in the hospital for her pump and feeds thanks to a dear friend :) Whose son passed last year from a similar problem as lilly's.
So there we are, still awaiting a diagnosis which may never come, knowing that it is a possibility our buba could get worse as she gets older, but no one really knows. Just focussing on the here and now, what she needs now, and what she can do know and has the potential to do!
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