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!
Sunday, November 21, 2010
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.
Subscribe to:
Posts (Atom)