It is so hard to believe that a full year has gone by. From this
to this
to this
and now
Emma went home with her mom late last night. They decided to wait on the EEG until later this week, but they have started Emma on an anti-seizure medication. No idea why this happened, just 'one of those things' that is not unusual with brain trauma.
I am told that Emma had a reasonably normal day today. Her mom took her to the Farmer's Market and she saw some of her friends. They went out for frozen treats,too. She still isn't 100% back to herself, but she is also teething again. She now has 8 teeth and is probably working on 3 more.
I cannot tell all of you just how much your prayers mean to us. It is such a blessing to be able to reach out in this way and know that you are there and praying.
Hi All -
posting this quickly while emma sleeps.
She is home now. She is now on an anticonvulsant med (Trileptal?) because the duration (25 minutes each) of the two seizures, and the fact that they had to use meds to stop them. Because of the prior brain damage of hydrocephalus, she is at higher risk for repeated seizures.
She is still not quite herself - she has lost a little muscle tone and is VERY clingy (which is not her usual pattern). She is also nursing ALL the time, and a little weakly - i think she is going to have to re-learn nursing a little. Her latch is slipping. She is not able to sit up very long without tipping over. I know these will all come back, but the regression scares me - and the loss of my chatty smiley little girl does too.
But, considering the many (worse) alternatives, she is doing well.
We have what amounts to a doctor's visit a day for the next two weeks, between follow-ups and testings.
Thanks for all the prayers and thoughts. I appreciate it all! Please keep Emma in your prayers as she is now on this new medication which grogs her out a bit.
thanks again.
jess & emma
I just talked to Jess and she says that Emma is back to 70-80% of herself. She is now being allowed to eat and has nursed several times. She is being social and interacting and even has a new word - "OK".
They are still at the hospital and waiting for the EEG to be done. They are calling this a 'focal seizure' and will probably be putting Emma on a medication for a while at least.
Thanks to all of you for the prayers, masses, and holy hours you have already offered. The Communion of Saints is indeed a reality that we can see and feel.
Emma is stable, she is still groggy and not herself. She is NPO with an IV to keep her hydrated. She probably would have trouble nursing right now anyhow. We are waiting for the neuros to read her x-rays and also for an EEG. So for so good, no more seizures have happened. Jess keeps second guessing herself on this, like any mom would I guess. Life is so full of the what-ifs! I am going to head in to the office and see about a dozen patients (unless of course some one goes into labor). It is so hard to be 600 miles away, but I am so glad that Jess has some good friends to help her where she is.
No fever, no signs of infection, no clue yet as to what and why. All the prayers are really appreciated.
I just got a call from Jess, Emma just had a seizure and she has called the EMT - they are on their way to the peds ER. More when I know more.
Update (2231 CDT)
The paramedics gave her a dose of diazepam (valium) which stopped the seizure and were able to put in an IV. When she got to the ED, she seized again and they gave her two doses of ativan and one of propofol and the seizures stopped. They are doing bloodwork and getting imaging of her shunt and will call in both a neurologist and the on-call for her neurosurgeon. Haven't tapped the shunt yet.
2248 - Emma will be in the hospital at least overnight, she is groggy but conscious, her O2 sat is 100% on blow-by oxygen, they are hoping that they don't have to intubate her. They are getting ready to give her a longer acting anti-seizure medication. Jess doesn't know exactly what it is, she says it is in the same family as Dilantin. She has a friend bringing her car, some clothes, and her breast pump equipment to the hospital for her, and they have activated the prayer chain from her parish.