So I'm feeling much more upbeat after the second set of doctors rounded. David's seizures are nearly under control. There is a visibile improvement. Just a little bit more and they'll start the 24-48 hour clock.
Highlight of the day: Watching a doctor totally grill a resident, who didn't have all the answers. (I feel for him! I'd hate to not know the answers! I like to get everything right.) The best part, as Tony explained, was that feeling of "Ooo! Ooo! I know! I know!" that we both had about the questions she was asking. What are the side effects of pentobarb? Why let me list them for you. So, we had a moment of laughter.
Tony is at the hospital with D and I'm going to catch up on some sleep now. I'll update later.
Thursday, January 19, 2012
Progress?
We talked with David's neurology team. He's not Ina true coma yet because of the continued seizure activity. They are making progress on that and we got reassurances that the increased doses he's getting of the coma med don't have an increased risk of anything.
They do still think they'll be able to reach that seizure free coma state, they just have to take small steps (or med increases) to get there.
David spiked a fever. He did this yesterday, too, and it went away with Tylenol, so hopefullynits no big deal. Still, with a central line in place, fever = lab work, so he got poked in the foot and catheterized to collect urine. Because it had been quite a while since he peed, they just left the catheter in. They explained that the coma med can slow down the entire digestive system, so they use the catheter to help with that.
We also anticipate hat they will order IV nutrition instead of tube feeds. He hasn't had a feeding since 3pm yesterday.
He is not at all conscious. He didn't flinch with the catheter or blood draw. That's a blessing for sure, but hard to see.
They do still think they'll be able to reach that seizure free coma state, they just have to take small steps (or med increases) to get there.
David spiked a fever. He did this yesterday, too, and it went away with Tylenol, so hopefullynits no big deal. Still, with a central line in place, fever = lab work, so he got poked in the foot and catheterized to collect urine. Because it had been quite a while since he peed, they just left the catheter in. They explained that the coma med can slow down the entire digestive system, so they use the catheter to help with that.
We also anticipate hat they will order IV nutrition instead of tube feeds. He hasn't had a feeding since 3pm yesterday.
He is not at all conscious. He didn't flinch with the catheter or blood draw. That's a blessing for sure, but hard to see.
Ninja seizure fight on.
David is unconscious but still having seizure activity. They keep increasing the meds and the activity is lessening, but not gone yet. The doctors should be around soon so we'll see what they say. I don't know if this is normal or not, but I'm guessing it's unusual for the seizures to stick like this.
Wednesday, January 18, 2012
Coma process begun
They gave the med to start the coma. It will take a while for things to be adjusted just right. I'm going to sign off for now.
Ready for coma
Im back in David's ICU room now. He's been intubated and has a machine breathing for him now. He's got a central line IV and an in-the-artery blood pressure monitor. They are just waiting for a physician to ok an xray of the central line placement and the nurse will give the med to start the coma inducing process.
So What's Up with David?
After sending a billion updates, I thought I'd use this page again to keep everyone up to date as often as I can.
I still can't post pictures from my iPad, so these will be words only. So here's the story up to now.
Back in August and Early September David was doing really well. Pulling to stand, crawling a lot, sitting and playing for long periods of time. Then in mid or late September he seemed dizzy and would fall over when kneeling or crawling. We started adjusting his meds, thinking it was a side effect. Over time he lost more and more skills, and the meds didn't make it any better. So by the time January rolled around he was no longer able to crawl, sit, roll over, hold up his head or lift up toys. In January he had an MRI which later proved to be normal.
On Tuesday this week (just yesterday!) I brought David to Children's Mercy Hospital to have an EEG, which is when they hook 40 some electrical leads up to your head and look and see what kind electrical signals your brain is putting out. We were hoping David would have a seizure while he was hooked up for his 1-2 hour appt, so they could see what kind of seizures he was having.
About 15 minutes into the test, we got a message that the neurologist monitoring the exam was concerned about the high and constant level of sub-clinical seizures David was having. They administered some anti-seizure med and decided to admit him to the hospital. By 11am we were upstairs checked into a room on the 3rd floor. I google what an EEG should look like it it was normal, and had to admit David's was pretty abnormal! Still, it was hard to understand all the rush. He looked fine from the outside, and I suspect he'd had this level of seizure activity since September. And speaking of that, what did these seizures have to do with his losses, if anything? Well...
The explanation I got was that they didn't know if there was a connection, but the seizure activity was alarming and they needed to stop it. Then we'd look at the long term issues. So, on Tuesday they started Depakote. It made him a little sleepy and it didn't look to me like it was doing anything seizure wise, but maybe it would take some time to build up to a therapeutic dose. Monday morning they explained there had been a positive change after the Depakote, just a small one. So they were considering increasing the Depakote.
Mid morning Wednesday I got to talk with David's team or doctors and ask some question that had started coming together for me. The summary was this, either the seizures had caused the losses he'd had, or it was the other way around and some unknown condition was causing this continual loss and the seizures were just part of that downfall. Probably the only good news out of this all was that no matter which way it was, they would treat it the same: stop the seizures and watch what happened. So stopping the seizures because the primary goal.
Wednesday afternoon they doubled his Depakote and added Fofphenatoin. I thought his EEG looked better to my google/Wikipedia trained eyes, even though it was clear the seizures were still happening. And I decided that "sub clinical" was too boring a way to describe them and decided to call them ninja seizures instead. They were both hard to see and resistant to anyone trying to stop them. See, that right there is proof that my sense of humor was intact a few hours ago.
So, a very wonderful friend came and sat with David, who was now sleeping due to all the new meds. I think the last time he was awake was around 8am this morning. Anyway, the friend sat with sleeping David and I went home to shower, repack, and spend some time with the rest of the kids. I picked them up around 3:40 and at 4pm David's doctor called and explained they were trying Versed as a last try to sto the seizures. They were also getting an ICU room ready for David. They wanted to move him over and medically induce a coma for 24-48 hours. I felt a little shocky. I told them to go ahead with the versed, but I did not want them starting the coma until I talked to Tony and had a chance to thnk of more questions to ask. By 4:35 we had two very good friends ready watch the older kids and were on our way to the hospital. By 5:30 we were talking with the doctor about why the coma was necessary. We decided to give permission for the procedure.
They had a room ready in the ICU and moved him over. By 8 pm we'd been walked through the procedures by several medical personel and it was time to wait. Tony headed home to be with the other kids and I'm waiting.
I still can't post pictures from my iPad, so these will be words only. So here's the story up to now.
Back in August and Early September David was doing really well. Pulling to stand, crawling a lot, sitting and playing for long periods of time. Then in mid or late September he seemed dizzy and would fall over when kneeling or crawling. We started adjusting his meds, thinking it was a side effect. Over time he lost more and more skills, and the meds didn't make it any better. So by the time January rolled around he was no longer able to crawl, sit, roll over, hold up his head or lift up toys. In January he had an MRI which later proved to be normal.
On Tuesday this week (just yesterday!) I brought David to Children's Mercy Hospital to have an EEG, which is when they hook 40 some electrical leads up to your head and look and see what kind electrical signals your brain is putting out. We were hoping David would have a seizure while he was hooked up for his 1-2 hour appt, so they could see what kind of seizures he was having.
About 15 minutes into the test, we got a message that the neurologist monitoring the exam was concerned about the high and constant level of sub-clinical seizures David was having. They administered some anti-seizure med and decided to admit him to the hospital. By 11am we were upstairs checked into a room on the 3rd floor. I google what an EEG should look like it it was normal, and had to admit David's was pretty abnormal! Still, it was hard to understand all the rush. He looked fine from the outside, and I suspect he'd had this level of seizure activity since September. And speaking of that, what did these seizures have to do with his losses, if anything? Well...
The explanation I got was that they didn't know if there was a connection, but the seizure activity was alarming and they needed to stop it. Then we'd look at the long term issues. So, on Tuesday they started Depakote. It made him a little sleepy and it didn't look to me like it was doing anything seizure wise, but maybe it would take some time to build up to a therapeutic dose. Monday morning they explained there had been a positive change after the Depakote, just a small one. So they were considering increasing the Depakote.
Mid morning Wednesday I got to talk with David's team or doctors and ask some question that had started coming together for me. The summary was this, either the seizures had caused the losses he'd had, or it was the other way around and some unknown condition was causing this continual loss and the seizures were just part of that downfall. Probably the only good news out of this all was that no matter which way it was, they would treat it the same: stop the seizures and watch what happened. So stopping the seizures because the primary goal.
Wednesday afternoon they doubled his Depakote and added Fofphenatoin. I thought his EEG looked better to my google/Wikipedia trained eyes, even though it was clear the seizures were still happening. And I decided that "sub clinical" was too boring a way to describe them and decided to call them ninja seizures instead. They were both hard to see and resistant to anyone trying to stop them. See, that right there is proof that my sense of humor was intact a few hours ago.
So, a very wonderful friend came and sat with David, who was now sleeping due to all the new meds. I think the last time he was awake was around 8am this morning. Anyway, the friend sat with sleeping David and I went home to shower, repack, and spend some time with the rest of the kids. I picked them up around 3:40 and at 4pm David's doctor called and explained they were trying Versed as a last try to sto the seizures. They were also getting an ICU room ready for David. They wanted to move him over and medically induce a coma for 24-48 hours. I felt a little shocky. I told them to go ahead with the versed, but I did not want them starting the coma until I talked to Tony and had a chance to thnk of more questions to ask. By 4:35 we had two very good friends ready watch the older kids and were on our way to the hospital. By 5:30 we were talking with the doctor about why the coma was necessary. We decided to give permission for the procedure.
They had a room ready in the ICU and moved him over. By 8 pm we'd been walked through the procedures by several medical personel and it was time to wait. Tony headed home to be with the other kids and I'm waiting.
Monday, November 21, 2011
Thanksgiving -> Advent Calendar
One of my very favorite Thanksgiving traditions is making our advent calendar. We started doing this years ago and the kids have enjoyed it at every age, from toddler to teen. We adults are pretty fond of it, too.
We make a paper chain to count down to Christmas.
So each strip has something about one member of the family, written by someone else in the family. Ideally each person can write about every other person in the family. We've gotten a *little* bigger than that, so I usually assign who each kid will write about by writing a name at the top of each strip - that's who you're supposed to write about. Even when the kids were little we did this, either writing down what they told us, or, as we do with David, guessing at what they would tell us if they could talk!
The the strips get folded so the message is hidden inside and given to me. I assemble the chain, which is, of course, red/green/red/green in pattern, because a random placement would drive me crazy! (I staple the links together.) Then each night we pick one kid to pull a link off and read it to the rest of the family. It's an amazing feel good moment and my favorite holiday tradition!
We make a paper chain to count down to Christmas.
I cut pieces of 8.5" x 11" paper in half, hot dog style. Those strips will be folded in half again, long ways. But before we link them together, each family member gets a stack of paper strips. We each write strips about the other people in the family. We write what we like about them, or something we enjoy doing with them, or just something nice about them.
So each strip has something about one member of the family, written by someone else in the family. Ideally each person can write about every other person in the family. We've gotten a *little* bigger than that, so I usually assign who each kid will write about by writing a name at the top of each strip - that's who you're supposed to write about. Even when the kids were little we did this, either writing down what they told us, or, as we do with David, guessing at what they would tell us if they could talk!
The the strips get folded so the message is hidden inside and given to me. I assemble the chain, which is, of course, red/green/red/green in pattern, because a random placement would drive me crazy! (I staple the links together.) Then each night we pick one kid to pull a link off and read it to the rest of the family. It's an amazing feel good moment and my favorite holiday tradition!
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