So What Just Happened?

Ah, we are home!  It was so good to sleep in my own bed, and based on the smile on his face all evening, David was also really happy to be home.

I'll probably not be blogging our everyday life now that we're home, but I thought I'd post one more time and let you all know the big picture.  For the most part I kept the blog to pretty positive thoughts.  I'm still hoping for the best, but I also want to be real.

So far in David's life we've always planned ahead, thinking toward a day when David is an adult and will need someone to take care of him.  With this latest turn, the doctors have been clear that David's time with us is limited.  David has a disease, or a condition, which they don't have a name for that means his brain is deteriorating.  Either due to ninja seizures or a neuro-degenerative disease/condition David will continue to lose things he knows and can do, and even things his body can do for him.  Eventually this will be fatal. 

They did a lot of interventions at the hospital and really cut down on the amount of ninja seizure activity.  There is no doubt the the coma maneuver really helped.  Even Hassani noticed that David seems so much more playful and with it than before he went in the hospital.  However, they do predict that David will continue to decline.  They hope we will be able to hold him in a plateau here for 3-5 years, but it could also happen that he continues to decline at the fast rate we saw in the past few months, or it could be something inbetween.

We are going to continue to try new medicines or ideas his neurologist has, but we have decided that it would be best for David and our family to try those things at home.  David's medical team supports us in this decision.  We're going to make the most of whatever we've got.  We could have years left with David, and I'm not going to ruin them worrying each day what tomorrow will bring, and hope you all won't either.  We're going to keep doing the things that are good for David.  We're going to work on making him strong again and continuing to help him learn to communicate better.  And we're going to appreciate every smile and laugh and all the joy he finds in life.

I wanted you all to know about this.  We have chosen not to share with Zeke, Hassani, and Gladys what the doctors are predicting for David until we find ourselves closer to the end.  I would appreciate it if you helped us with that.  They all care so much for David, and I don't want them worrying about him any more than they already do.

Thank you all so much for the help, support, and prayers of the past couple weeks.  In so many big and little ways you were here for us.  We love you and we thank you!

We're Coming Home!

We are on our way to discharge après tonight if all goes well. The seizure activity hasn't stopped, but we will try to manage it from home.

Good news to pass along

After typing the last update I forgot to include the happiest news of the day... David has been awake and alert and playing all afternoon! Hes slowing down now and just watching some tv, but we've had lots of smiles. If you have Facebook access I was able to post a few pictures there, but I can't get them on my blog, sorry!

He had a really good day. He's in love with his day nurse, grinning from ear to ear whenever she came in the room! Of course she's in love right back. It's really been a good day.

Thursday Update

I'm so sorry I didn't post earlier. It's been a busy day, along with some happy and sad.

Bottom line, they haven't been able to stop the seizure activity, though it is much better. They are not seeing the steroids making a difference. We have requested and the doctors agreed to work out a plan where David can be treated at home. They have another medicine to try, but we can try it at home. We won't be constantly watching the EEG, but instead just judging by David's behavior and gains or losses. He can be with us and go back to school and enjoy the things he loves!

So, we're working toward going home, knowing he'll likely still be having losses, but hoping they will be much slower now. We should have a meeting with the doctors tomorrow or Monday. I get training tomorrow on using a home suction machine. (David can't really handle his own drool and mucus any more. This might be part of his losses, or it might be a side effect of a med. we'll be trying to figure that out.) they are easing him off of some IV meds. Each thing is a little step closer to going home. We still don't know what tomorrow will bring, but he's smiling again and we'll make the most of every day!

The up and down day

It's been an up and down day. David was awake this morning and I got to play with him and make him smile. That felt so good, but I was really bothered that he wasn't trying to touch his iPad or play with it. He also sometimes just stared at nothing and I couldn't get his attention. I'm hoping he'll be better tomorrow, but playing with him today just brought home once more all of his losses.

The neurologists stopped by and said they hadn't had a chance to look and see how he was doing on the EEG yet. They said if the EEG continues to look good, we could discharge on Friday or Sunday. Something in that range.

David got a PICC line today, which is a stronger and better kind of IV. Call it a super IV if you will. This will be used for all his IV meds and lab work. When they were prepping for the PICC line insertion I finally reached my overload. You know that point where a couple really small things don't go your way, but they all add up to a lot of sobbing? I was the sobbing one.

The only problem with crying was I just couldn't stop. A nice nurse checked on me and someone called a chaplain, who showed me to a quiter room so I could just cry for a while and talk things out with her. Hospital chaplains are the best!

After the PICC line was put in, he was moved to a regular hospital room. Around 9pm he had a seizure, the non-ninja kind. They gave him some IV medication to stop it. So we have a lot of questions for the doctors tomorrow.

Mid morning update

The PICU team did its rounds and they are deferring to the neuro team as to whether David should stay in the PICU or return to the regular part of the hospital.

They have ordered a PIC line for David instead of the regular ivs that have had to be replaced multiple times. That should be done this afternoon and will be a welcome relief. I think it was 6 separate sticks yesterday. It will be good to have a longer-lived IV access for labs and meds.

David seemed more alert this morning, but was still pretty spacey. He'd be looking at me or watching his iPad, and then would just stare into space ignoring me. This part is very hard. The neurologist told me that when he wakes up, that will be our new normal. I'm trying to be patient, but I worry, because of the staring, because he isn't even trying to lift his arm to the iPad. I am wondering if he's actually had more losses in the past week.

So I'm waiting for the daily neurology check in. It was at 4:30 yesterday. I don't know how fast they thought they might see the effects of the steroids. We'll see what they say. At least David's door faces the main hallway the doctors use. I'll be stalking the neuros!

Smiles

Yesterday afternoon David seemed pretty groggy. One of the doctors was checking him out and saw that David was really focused on her. So, she started to play peek-a-boo with him and he smiled! Not a huge one, but very sweet and he was obviously entertained.

Then last night we were able to Skype between home and hospital and the kids had him smiling really big! It makes my heart smile.

I'm waiting for morning rounds, but I think they will probably move him to a regular hospital room today. I'll update later.

More ninjas and a new idea

So, here's the latest news on David.  He's still got sub clinical seizures going on. The seizures aren't happening all the time, just now and then, but it's important to stop them.  They don't wan to do regular seizure meds because They are sleepy making and he's still barely awake!So they are going to try a course of steroids. Are steroids the cure for anything? They keep coming up with last ditch efforts. At least this one is easy, and maybe it will work.Anyway, it's 2-3 days in the hospital for that, and dare we hope to go home then?So they'll start the steroids tonight.  They're going to continue the EEG so they can watch and see if it's working.  If David continues to breathe well on his own, we should move out of the icu to a regular room soon.  That will be nice!

The tube is out!

As of about 9am today David's breathing tube is out! He's doing well breathing on his own!

Is today tube day?

So, last night David was as awake as I've seen him since Wed morning. His eyes were blinking and I'd like to think he made eye contact. :) I got out his iPad and played an episode of Super Why. He seemed to be watching it, but he couldn't follow it with his eyes when I moved it, which I think is a sign of how doped up he still is.

It looks to me like a bit of a battle between waking up form the coma and the sedative effect of the new seizure meds. And then there's the coughing and the tape. Part of waking up froma coma apparently involves lots and lots of coughing. Full body shaking racking coughs, that are sadly silent as they wheeze through the tube. And if you have a cold like David, coughing involves a lot of mucus. A lot.

So at 3pm yesterday they gave David some pain meds to allow them to remove the tape beard that holds the breathing tube in place and put a new and clean one on. After he woke up from the tape meds David started coughing and drooling, and by 8pm, the entire bottom of the beard was loose. At 4am they gave more pain meds and replaced it again. Hopefully he'll wake up enough today to get the tube out and avoid a fourth tape beard.

It should be a good day!

Not quite as planned

So... Not all the doctors agreed it was a good idea to remove the tube while David was still sedated. Most importantly, the doctor in charge is a wake-up-before-we-take-the-tube-out kind of guy. And since he's still not conscious... The tube is still in. They say it should come out tomorrow.

There are good signs. He raises his arms up every time they try to suction him. His eyes have been fluttering. He's doing some of his own breathing. He coughs on his own. And it was probably a good thing he was out of it today. They had to retape the tube around his mouth. (thats removing he old tape and putting newvstuff on, all while holding your mouth and the tube very still. They also started a new IV and removed the central line. These are all hings that are easier when you're not awake enough to hurt or fight them off.

The fever he's had could be caused by a UTI, they confirmed today, so I see some antibiotics in David's future.

It's a good day!

I have talked with some of David's doctors this morning and am waiting for the rest to come on rounds. So far it's good news.

David is still not conscious, but showing more and more signs of coming around. He's initiating all his own breaths now, and will probably get the breathing tube pulled later today.

The biggest news is that he's been seizure free for 24 hours just on his seizure meds. They will likely disconnect the EEG tomorrow. They say it's very close to David's normal EEG from last year. That is GREAT NEWS!

There are other little details. I've started talking to the doctor about how we will know if this is happening again in the future. What if he continues to have losses even with the seizures under control? I felt like we had a good start to that conversation.

David did have a fever last night and they drew lab work to see if he has an infection, especially an infection of his central line. The fever is down, but the lab results take 24 hours.

Some of you may have been aware (via Facebook or email) that the hospital's wifi had blocked my access to this web page this morning, citing "mature/adult content" (what blog are they reading?) my thanks to them for restoring it quickly at my request!

Medicine makes me sleepy

So, it looks like increasing David's seizure meds may have slowed down his return to consciousness. He is coughing and taking some breaths on his own around the breathing tube, but he's not responsive yet.

I had a great evening with the older kids. We didn't take them in to see David because we think it would worry them too much. I ate with them in the cafeteria, though. We played some Pokemon there and then walked to some of the cool spots in the hospital. It was so nice to see them again!

Tomorrow will bring more trying to wake up, and a new neurologist on rotation. The good news is that it's David's neurologist, so he knows David well and has been directing things behind the scenes. I'm curious to see if HE will train me toread the EEG, but I'm guessing he'll be vague and avoiding like today's neuro was. (I mean, that's probably the right call, because a little information is a dangerous thing, but that doesn't mean I don't want it! Don't force me to get a google degree in EEG reading!)

Little bit of bad new, but even more good.

So, hang in there with me, because it looks better at the end. David had some ninja seizures today. However, it was not *continuous* seizures, just a little here and a little there.

Now for the good news. The neurologist was watching the seizures and noticed that they went away when one of David's new seizure meds was given! After a while the little ninjas came back, BUT now we know medicine that might make them go away. So they are increasing the dose of that medicine, and all of this is happening while they can watch on the EEG monitor.

I see this as good news. I was starting to think ahead and wonder how or what we would do if or when the seizures came back. So having them back here, in tiny amounts ata time where they can watch and see how to make them go away is a very good thing to me. So, there's no guarantees, but there never were, and at least know we have a medicine that's working on them.

(If you are wondering, they did try this medicine before doing the coma. They saw it had an effect on the seizures, but it just couldn't stop them. I suspect this is because they were constant and had been irritating his brain for so long. Hopefully it will be different now.)

Progress!

On the physical side David is making about as much progress as you can while you're still asleep! He's showing early signs of coming around, including jerking his foot away from a toe pinch, coughing when they suction his lungs, and initiating some breaths himself - even with the breathing machine still in place. They are actually starting the process of weaning him off the breathing machine. It's a slow process and one they can't do until he is fully awake, but they started!

On the seizure side he has had no physical seizures. His brain activity is nearly constant, but the neurologists won't make the call yet about whether he is seizure free or not. I think that part of the issue is that David's regular brain patterns are pretty abnormal. So I can google search and see what a normal EEG looks like, but I don't really know what David's normal one looks like. And the neurologist didn't want to give me a lesson on reading EEG, saying its too early to call it anyway. So I am choosing to think that means its too early to worry about it either.

So today I'm celebrating the gains he's made. Thank you all so much for your prayers, positive thoughts, kind messages, and support in so many other ways! Thank you!

Sleeping Beauty

So, I had this idea that waking up over two days involved a lot of in and out of sleep and grogginess. It still might involve that, but after talking with the night nurse, I realized they don't really expect him to start moving until maybe this afternoon.

However, there are all kinds of signs that he's moving toward waking up. His brain activity is nearly constant now (there was only very sporadic activity in the coma state). It also, to my untrained eye, looks seizure free.

The nurse reports he took a couple of isolated breaths on top of the breathing tube, which is a sign that his body is waking up and thinking about doing its own breathing.

So there are a lot of encouraging signs today. Mic the nurse's prediction is right, there won't be much to update today, but he's still doing fine.

Still sedated

Just a quick update: we're definitely seeing more brain activity on the EEG, but he's still unresponsive. That just mean s he's still working his way out of the coma. So all is well.

Coma med turned off

The nurse justnswitched the coma med off at 12:35. So now starts our couple days of coming out of the coma!

Running on hospital time

Its just after noon (I've noticed the time stamp on these entries is off by 2 hours) the ICU doctors are still rounding and we haven't seen them yet. And last I heard, the neuro team and icu team were going to talk after rounds and then put in an official stop order for the coma med. So we wait.

PICU Trivia

Did you know that in the PICU you...
-get a bath at 5am
-then you get some suctioning (well, to be fair you can pretty much get suctioning any old time your lungs desire)
-then you get a chest X-ray

-then your mom goes back to sleep (well, today she does)

Saturday is Coma Be Gone Day

One of David's neurologists stopped in this evening for a quick update. They will stop the coma med tomorrow (Saturday) at noon. She said to expect it to take up to 2 days for him to be totally out of it. He'll keep the breathing tube in until he's fully conscious.

Our big hope is that the seizures won't return, however it's not an instant thing we'll know at noon tomorrow. It's actually going to be a few days before we can say "We kept the seizures away!" still, I'm feeling very very hopeful tonight!

24 hour mark

I have a lot to update today, so I'll do my best to keep it all straight.

David's daily chest X-ray shows a little area of collapse in a lower corner. They are trying some simple methods to get it working again.

Today at noon marked 24 hours in the coma, so tomorrow at noon is the 48 hour mark, and that's roughly where they are aiming. That means I'm expecting them to start bringing him out of the coma tomorrow. Then we'll be watching for seizure activity on the EEG.

of course it's not as simple as flipping a switch, and a really wonderful nurse sat down and walked me through the process as it typically happens. They will slowly back off on the coma med, and the drs will decide how fast or slow this process is. She said to expect him to be pretty groggy for a couple of days. It wil take a while to recover, plus they have started him on new daily meds, and they could make him sleepy, too, as he gets used to them.

Through these recovers days, he will still be intubated with the breathing machine (ventilator or vent) doing his breathing. Once they think he's recovered from the coma, they will start weaning him off the vent, but this is a slow process and depends entirely on how eager he is to take over his own breathing again.

So my guess is that we'll be in for 6 or 7 more days, but that's just a guess.

I've had a lot of people offer help, and I'm so thankful to each of you. We're still figuring out ow best to handle this all, and once we have a plan, we may start calling you. Our church is bringing us meals. Thank you all for your thoughts and prayers and offers to help. I don't expect much to happen today (I hope). But I'll update if anything changes.

Looking good

Another update from Tony that they have settled David's sedation level into the target zone they were looking at - so no more 3 minute lapses.  That's good news!

Timing

I got another update from Tony.  The seizures are still gone, but they are having a hard time leveling out the medicine.  They are looking for 8-10 second intervals with no brain activity.  Unfortuately they have been getting up to 3 minute intervals with no activity.  So they have backed off on the coma med to get him not so deep.

Good News! Ninja seizures knocked out!

I woke up from my nap to good news.  Tony emailed me and said they got the seizures stopped.  They are tweaking the coma med to get just the righ level of brain activity, too much you get seizures, but too little is not good either.  Sounds like they are working out the right dose. 

If I understand what the doctors said, that means our 24-48 hour coma clock starts now.

Pictures

I can't post pictures from my iPad.  I'm home now, so here are a couple:

I think I took this on Tuesday.  He's playing with his iPad.  Head covered in EEG leads and smiling at me.

I took this one last night.  The big tube thing is the breathing machine. 

Rounds

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.

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.

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.

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.