Well, we're still in Omaha. Not much chance of leaving either, at least for a while. They have been upping Matthew's phenobarbitol and his level seems to be where it needs to be. There has been a LARGE lack of communication between the neurologist and the resident doctors and the hospitalist. At 4 am this morning, Matthewhad had enough. He had decided he was going to write his first blog entry on the "' top 10 reasons to hate the hospital." Mommy even gave him permission to use the computer :) He had been thinking of reasons for some time. But-- the hospitalist came in today is WONDERFUL and talked to Matthew. She took care of all of our frustrations and even had a serious talk with the residents and the neurologist.d hopefully there will be more communication.
Mommy, on the other hand, is exausted. there is little thought for the parent to get real sleep and with full vital signs every 4 hours and with 5 different people in our room ito "assess" Matthew at 5 different times between 6:45 and 8:30 a.m. there is not much sleeping going on. We have been heavily relying on naps throughout the day. We're hoping this changes tonight since one of the many new orders written by the Dr. was to change his vital signs to every 8 hours, yeah!!!
I have some pictures of Matthew on my camera, but my batteries are dead!! I'll have to wait till we get home. I am seeing improvement in some areas and I *think* the seizures are getting less intense. I'm ready for them to be gone, though. I'm hoping we'll get to go home by Sunday, but not sure on that. I'll try to update every day and let everyone know what is going on.
Please pray that these seizures stop, that they find the perfect combination of medicine for Matthew, that the side effects are minimal and that there has been no long-term damage to his precious brain.
5 comments:
Jill - I just wandered in today after a few days away from the blog world and I am now sending a
big hug to you and Matthew!! I've had to retype this a few times as Owen keeps hitting the keys, I think he wants to send a hug as well. I know there isn't anything we can do from so far away, but we'll keep you in our prayers and I'll be checking in a few times a day now to see how he is doing.
Sorry to hear you are still there. We will keep praying for the seizures to stop and for the perfect solution to be found. Hope Mommy can get some sleep! We'll keep praying! Can't wait to see all the cute photos:) Keep us updated, we think about you often!
My heart just breaks for you guys. I empathize on how exhausting the hospital schedule is.
We'll keep praying hard that Matthew's seizures will cease and his brain will be protected through all this.
I look forward to the cute pictures!
*BIG hugs*
Hi Jill! I finally got some time tonight to play on the computer and found your blogspot. I have enjoyed reading all the updates and now understand Matthew's condition a little better. It was so good to see you in Lincoln! So very very good! I am feeling better each day (if I don't overdo)and am getting impatient to be at 100% again! We will be continuing to pray for your family and that Matthew's seizures will cease. We love you!
Jill! I feel like such a horrible 'friend'! I can't believe that I missed these posts about Matthew being in the hospital! So scary! I know all about seizures. Elisabeth was on phenobarb for a few weeks...but then they switched her to Keppra and it has worked FABULOUSLY for her. I rarely see any 'normal' seizures...just the infantile spasms (which can't be controled with regular antiepilepsy meds).
Anyways...you have had a long stay at the hospital. Are your other kids doing ok? Have they had a chance to visit much?
Hang in there and know that there are so many that care for you and precious little Matthew. I will keep him in my thoughts and in my prayers.
Get some sleep :)
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