After a 6 week stay in hospital, we are finally home with our bubba girl! The phenobarb is working, she is barley having noticable seizures now, maybe 4 a day, just staring ones...sometimes even i cannot tell if she is doing it or not! I didn't notice any yesterday at all!
We are increasing the Epilim, and decreasing the tegretol. Plan is to eventually get her down to one medication instead of 5, so talking of stopping the phenobabr again at some point. The phenobarb is good, but it delays learning and literally shuts the brain off, so she cannot reach her full potential if on it long term.....:/
MRI and LP confirmed for the 10th december, blood levels on tuesday, Rpt EEg in january, And repeat hearing and eye tests in feb. Video swallow prob in next two weeks, and for a PH probe prior to a gastrostomy at some stage.
Still floating around in unknown land right now, it is obvious that she will need full time care, so not sure what to do about work at the moment. Hoping to still work 2 days a week and get a carer or something for when mum cannot look after her.
Other than that she is the happiest i've ever seen her, laughing and babbling away at her sisters, probably telling them all about her hospital adventures...wish i knew what she was saying..lol
Still getting used to her meds and feed regime, it is not as easy on the other side. I just want a pole to hang the pump on, or a longer line, or another nurse to hold this while i do that...lol bit different on the parent side, there are challenges to face in the home environment that are not an issue in hospital!
She has spiked a temp this afternoon :( and is very gurgly, not clearing heer secrtetions well, so we are on lilly watch now, Her Paediatrician Dr Smiley ( yes that is his name and nature believe it or not) isn't too concerned at the minute, but i have to call him tomorrow to let him know if she is any worse..prob a course of abs, hopefully will fix it..don't fancy a trip back to the hosp so soon!
Well, off to get festive and hang up the tree, hopefully missy behaves so i can do that and maybe she can stare at the pretty tree instead...lol
Special thanks to all those who have been great supports...you know who you all are!!!
Thursday, December 2, 2010
Sunday, November 21, 2010
Here We go again :(
Well, a lot has happened since my last post. Oh Boy, where to start?
First the doctors tell me thay can't stop the seizures completley..and i fall apart and put myself back together.
Then the Doctors tell me they want me to take my baby home, not quite the same as i brought her in..i fall apart again and put myself back together.
Than, Lilly has a really bad day...had 63 seizures, in a row, all day..constant seizures for 12 hours straight...they call this a Status Epilepticus...had to have three sedating infusions to stop them...which affected her breathing and it was totally the worst she has ever been! How can she get worse, when they are meant to be helping her...so fell apart again...still putting myself back together again...feel a bit like humpty dumpty!
It was due to them stopping the Phenobarbitone, apparently she needs that! So they have started it again..but it means thay have to have a re-look at her other meds.
Thankfully she is now doin great...but it is still early days...only day 2 since the infusion...tomorrow will be the telling day..if it holds or not...day three here we come!
First the doctors tell me thay can't stop the seizures completley..and i fall apart and put myself back together.
Then the Doctors tell me they want me to take my baby home, not quite the same as i brought her in..i fall apart again and put myself back together.
Than, Lilly has a really bad day...had 63 seizures, in a row, all day..constant seizures for 12 hours straight...they call this a Status Epilepticus...had to have three sedating infusions to stop them...which affected her breathing and it was totally the worst she has ever been! How can she get worse, when they are meant to be helping her...so fell apart again...still putting myself back together again...feel a bit like humpty dumpty!
It was due to them stopping the Phenobarbitone, apparently she needs that! So they have started it again..but it means thay have to have a re-look at her other meds.
Thankfully she is now doin great...but it is still early days...only day 2 since the infusion...tomorrow will be the telling day..if it holds or not...day three here we come!
Monday, November 15, 2010
Not giving up!
today qualified as the almost worst day of my life to date. Doctors told me that there is little chance that lilly will ever be "seizure Free" and will continue to have frequent seizures daily or "uncontrolled" seizures for quite a while. As she gets older and bigger the medications should become more effective cos babies metabolise the medication too fast for it to be effective enough in some cases.
Devastated...due to the seziures she cannot eat/drink properly so will have her formula in a tube down her nose for a while, but we can still offer her small amounts of puree. She needs suction to help clear her oral secretions cos her cough is ineffective due to the seizures.
My poor bubba cannot lead a normal life as long as this goes on...:( so sad for her.
What this means long-term is still unknown, we have to take baby steps and take it as it comes.
The plan is to set things in motion for lilly to come home in the next two weeks though!!!! We will need a lot of equipment, and supports in place, so it will take that long to organise it all. We can take her on day leave though :)
So it's a good day, cos she can come home soon...but we are not taking our bubba home as she was before we came in....i am grieving for the loss of lilly as she was...but have to love lilly as she is now even more!
Very emotional rollercoaster day.
Devastated...due to the seziures she cannot eat/drink properly so will have her formula in a tube down her nose for a while, but we can still offer her small amounts of puree. She needs suction to help clear her oral secretions cos her cough is ineffective due to the seizures.
My poor bubba cannot lead a normal life as long as this goes on...:( so sad for her.
What this means long-term is still unknown, we have to take baby steps and take it as it comes.
The plan is to set things in motion for lilly to come home in the next two weeks though!!!! We will need a lot of equipment, and supports in place, so it will take that long to organise it all. We can take her on day leave though :)
So it's a good day, cos she can come home soon...but we are not taking our bubba home as she was before we came in....i am grieving for the loss of lilly as she was...but have to love lilly as she is now even more!
Very emotional rollercoaster day.
Thursday, November 4, 2010
One step forwards, two steps back
title says it all really. Bubba has somehow caught yet another virus, and is literally drowning in her own mucous. Having, nebs, suction and chest physio to help clear it. Means that her MRI,etc is cancelled untill she gets over this one. Also having more seizures due to vomiting with coughing and losing medication??? or just cos she is sick.
Feels like we make progress and as soon as we start getting hopeful that we are getting somewhere something puts us right back to square one again :(
Don/t know how i keep coping...or if i can keep coping,,,crawling up in a ball in the corner looking good right about now!
But we press on, lilly needs us to keep it together and she doesn't know ant different.
i think we may have to start thinking about what changes to make in our lifestyle, looks like this is going to be ongoing and difficult to deal with.
Feels like we make progress and as soon as we start getting hopeful that we are getting somewhere something puts us right back to square one again :(
Don/t know how i keep coping...or if i can keep coping,,,crawling up in a ball in the corner looking good right about now!
But we press on, lilly needs us to keep it together and she doesn't know ant different.
i think we may have to start thinking about what changes to make in our lifestyle, looks like this is going to be ongoing and difficult to deal with.
Sunday, October 31, 2010
Rollercoaster
Day 18 now..i think???? Well the last week has been full of up days and down days. Some days she has been really great, only a few seizures and minor ones at that. Then the next day she has lots of big ones and has continued so since. Today is a down day :( Having lots of big ones today. But had a great day yesterday.
Waiting in anticipation for the doctor's round in the morning......
Waiting in anticipation for the doctor's round in the morning......
Wednesday, October 27, 2010
Day whatever and a bit
Lilly is improving...Yay! Only 4-5 seizures a day now compared to 20-30 before...the new medications are starting to have an effect! Unfortunatley this means she is on a myriad of drugs, and they are tentativley reducing one or two, ever so carefully so as not to disturb the delicate balance and set her off again...ooooh it is like playing JENGA!
Seen the Genetics team, lilly has an extra bit on chromosone 3, whatever that means, so jase and i had to give our blood for chromosone testing to see if there is a genetic link. That will take a month or so to find out. Then a plan to do another MRI of her brain under anaesthetic and do the Lumbar Puncture then...just as well really.
Due to the delicacy of titrating her medication and her tendancy to fit whenever stimulated, we are staying in a few more days, at least until we are either seizure free ( if thats possible now ) or down to one -two a day. So who knows???? Hmmmm this is an interesting chpter of our lives, pity we can't proofread it first or edit it after!
Seen the Genetics team, lilly has an extra bit on chromosone 3, whatever that means, so jase and i had to give our blood for chromosone testing to see if there is a genetic link. That will take a month or so to find out. Then a plan to do another MRI of her brain under anaesthetic and do the Lumbar Puncture then...just as well really.
Due to the delicacy of titrating her medication and her tendancy to fit whenever stimulated, we are staying in a few more days, at least until we are either seizure free ( if thats possible now ) or down to one -two a day. So who knows???? Hmmmm this is an interesting chpter of our lives, pity we can't proofread it first or edit it after!
Sunday, October 24, 2010
Day 11
Well it's day 11 of this hospitalisation. Longest time yet! has all become a bit of a blur of late, totally lost track of the days and dates etc, and what has happened when! Almost in zombie mode now, get up go to hospital, go home after tea, go to bed, repeat...except for important days when i need to see the docs then it's sleepover at the WCH!
at least 7 seizures witnessed today, i think, losing count but that is decidedly less than previous days so that's something! slight temp today, given panadol. probably picked up some other nasty bug being in hospital.
Otherwise happy in herself, playing and smiling and babbling away. It's a good day today! :)
Plan for tomorrow...Lumbar Puncture to test spinal / cerebral fluid for metabolic disorders. Some test results back! They are normal, so don't shed anymore light on the situation. But it is good that they are normal.
Calling it Epilepsy with Developmental Delay until a diagnosis is found, which won't be for a very loooooong time i think.
wondering how much longer this is going to go on for????? Only lilly can answer that.........
at least 7 seizures witnessed today, i think, losing count but that is decidedly less than previous days so that's something! slight temp today, given panadol. probably picked up some other nasty bug being in hospital.
Otherwise happy in herself, playing and smiling and babbling away. It's a good day today! :)
Plan for tomorrow...Lumbar Puncture to test spinal / cerebral fluid for metabolic disorders. Some test results back! They are normal, so don't shed anymore light on the situation. But it is good that they are normal.
Calling it Epilepsy with Developmental Delay until a diagnosis is found, which won't be for a very loooooong time i think.
wondering how much longer this is going to go on for????? Only lilly can answer that.........
Monday, October 18, 2010
New Plan of Action!
Today is day 6 in WCH.... for those of you who don't already know, Lilly has been having seizures for the last two months which have not been responding to the usual medications used to stop them. This along with her other issues of dysphagia ( difficulty swallowing ), Nystagmus, ( jerky eye movements sometimes resulting in vision impairment) and developmental delay has compounded the initial problem and making the doctors scratch their heads to find the cause. This is her 5th hospital admission in 2 months since she turned 6 months old. Lilly now has a nasogastric tube inserted in her nose which goes in to her stomach so she can have the medications as due to her dysphagia she would choke on them otherwise.
So the plan is to get the seizures under control so we can manage her care at home. Easier said than done..apparently. Levels being done this afternoon to see if the tegretol levels in her blood are sufficient enough to stop the fits. If the level is up but she is still fitting ( which currently she is ), we need to look at trying other medications. The fits and the medications both make lilly drowsy so she is not able to feed properly until it's all under control. currently being fed through the nasogastric tube. Hoping to get sorted in next couple of days...fingers and toes crossed!
Every test that they can think of has been sent off, or booked. It will be a while before we get any results or any closer to identifying the cause of lilly's issues, so in the meantime it's a matter of management and control of the current problems until we get results e.t.c.
The doctors and nurses have been very supportive. The hardest thing is leaving her here of a night time every second night...i decided to do alternate nights at hosp and home...to keep me intact but also to spend time with jase and the girls. Have to remember i have two other daughters who need me too, and a hubby who is doing most of the running around and holding the house together while this is all going on!
Lilly is getting visitors this afternoon...exciting! She loves cuddles and i'm sure she will get a whole heap!
Well that's it for now...catch u soon. xx
So the plan is to get the seizures under control so we can manage her care at home. Easier said than done..apparently. Levels being done this afternoon to see if the tegretol levels in her blood are sufficient enough to stop the fits. If the level is up but she is still fitting ( which currently she is ), we need to look at trying other medications. The fits and the medications both make lilly drowsy so she is not able to feed properly until it's all under control. currently being fed through the nasogastric tube. Hoping to get sorted in next couple of days...fingers and toes crossed!
Every test that they can think of has been sent off, or booked. It will be a while before we get any results or any closer to identifying the cause of lilly's issues, so in the meantime it's a matter of management and control of the current problems until we get results e.t.c.
The doctors and nurses have been very supportive. The hardest thing is leaving her here of a night time every second night...i decided to do alternate nights at hosp and home...to keep me intact but also to spend time with jase and the girls. Have to remember i have two other daughters who need me too, and a hubby who is doing most of the running around and holding the house together while this is all going on!
Lilly is getting visitors this afternoon...exciting! She loves cuddles and i'm sure she will get a whole heap!
Well that's it for now...catch u soon. xx
Welcome
Well, here we are, i have created my very first Blog! Created so i could easily update everyone on lilly's condition and progress and also put some of my feelings into perspective about the whole thing. Thanks to Cassie for the idea! Welocme! The idea is to post updates for friends and family, and journalise the events as they happen etc.
May take a while to get up and running, so be patient as lilly is still in hospital and i am a bit everywhere at the moment! Feel free to leave comments and i will try to get back to you as soon as i can.
May take a while to get up and running, so be patient as lilly is still in hospital and i am a bit everywhere at the moment! Feel free to leave comments and i will try to get back to you as soon as i can.
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