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!

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!

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.

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.

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.

David and his iPad

Since we got the iPad for David, I've been following this blog:  http://babieswithipads.blogspot.com/  It's been my go-to source for information on using an iPad therapeutically.  She recently asked for stories and pictures about kids using their iPads.  So I wrote up some thoughts about how we're using the iPad with David and how I feel about it right now:

 My son David is four years old. He’s got no syndrome the doctors can name, but he has a bone disease and developmental delays that have him operating at about a one year old level. He can babble and make a few signs. He’s got seizure disorder and finding the right amount of the right med to control it has been very frustrating lately. So I used to be able to say he could sit, crawl, and pull to a kneel, but we don’t see much of that any more. Now he sits with support and rolls. Here’s a look at how he uses the iPad.


We use the iAssist app to let David choose from a field of four choices. He chooses between 3 songs and a “stop” icon. (He’s never picked stop. David is a music machine.) We’ve set up a field of four that lets David pick between stand, clap hands, make monkey noises, and stop. iAssist isn’t the best app in the world, but I can’t bring myself to buy ProLoQuo2Go when I’m not sure what level he can use it at right now.

We use the many musical apps to teach “When I touch this, things happen”. His favorites are Elmo’s Monster Maker, Itsy Bitsy Spider, Look Baby! and Sparkabilities.

David really likes the iPad and the sound of it has him searching to find it. This has prompted several other uses for the iPad. We use it as bait to get him to move. We use it as a distraction in medical situations. David tolerates a blood draw with much less fuss when he’s playing the iPad at the same time. He’ll wait patiently in a waiting room with the iPad. During a weeklong hospital stay the iPad was an incredible distraction and entertainment. When the nurses needed to access his IV, I’d hold the iPad on the other side of the bed and he’d play with it without seeming to notice the nurses messing with his other arm.

Which brings me to another use for the iPad, though not therapeutic. I used the iPad when he was asleep in the hospital. I checked email and kept everyone up to date with short blog posts. I checked the news and weather. I just relaxed with games. We also have found our elementary school aged kids get a lot of use from it. Spelldown Spelling Bee has ended complaints about practicing spelling words and we use it to study vocabulary for tests, too. There are tons of basic math programs, but Pop Math and Math Ninja are two favorites for learning math facts.

We’re working to get David’s iPad into his public school preschool class room and we’re meeting some resistance. Every thing is moving slower than molasses. We bought the iPad and are willing to sign papers to let them use it at school. The therapists directly working with David seem interested, but higher up the food chain they are hesitating. I think it has to do with fears that if this device is proven good for David that they’ll be expected to buy one for him or another child. And they already have an inventory of AAC devices, one of which is working well for him.

My biggest frustration is in feeling alone in using the iPad with David. I’m coming to realize the answer to this is probably to hire a private therapist to work with us on it. I feel like there’s so much potential that we’re not using. I see the way David moves his arm or his hand and I think it’s significant, but I’d like a professional opinion on what we might do to help him use it better. I just imagine that someone with a head full of OT and communication ideas would watch him use the iPad and see infinite ways it could be used in therapy and to communicate. Or maybe they’d watch him and say we’re over-reaching for where he is right now. I doubt that, but I don’t know. I was hoping the school therapists would be that source of ideas, but I think their hands are tied.

And while I was busy writing that up, I left the iPad propped up next to David.  I could hear him playing with it in the next room.  Tony called me in.  I took another picture. He's been sitting for 15 minutes playing with the iPad.  Sitting.  We haven't seen him do this in about 8 weeks.  So, yeah, I'm a fan of the iPad!

David Update

I thought I'd do a little update on David.  He's been home for about 3 weeks now.  They aren't requiring as many labs as I was afraid of, and they've only adjusted his medicine dose once.  Overall, I have to say he's doing well, though he has a little cold right now.

Still, despite overall good health, David hasn't returned to normal, and I miss him!  While in the hospital they changed his seizure medicine dose.  As expected, this led to some dizziness and loss of skills he'd already mastered.  We expected it would take a while for him to get everything back, but I'm frustrated at how long it's taking.  David has most of his fine motor skills back, but gross motor has been a big loss.  He rarely sits on his own and when he does he doesn't last long.  He used to crawl across the room, but now it's just a foot at a time, and probably just once each day.   He used to move around and explore a little - we were getting used to finding him in the kitchen or next to the hallway.  He does a lot of laying in the same spot now.  We're also finding him stuck on his stomach after he does try to roll or sit.  And he's sleeping quite a bit, too. 

This kind of thing is so frustrating.  What's causing it?  The new seizure med?  That's most likely, but there's also the new rickets med to consider.  And there's the cold.  It could be a factor.  So we wait.  We've decided to give him the full 4 weeks to adjust to the med.  So, if things aren't improving next week, we'll be trying to make an appointment to see the neuro.  It's one thing to do a med adjustment when I've seen him have seizures.  It feels a whole lot different when I thought he was fine at the old med level.

Still, even though I sometimes wonder how many faces he looks at me, we've been taking him out and he's having fun.  He's loving preschool, stroller rides, and even a ride in the bike trailer.

Home Again!

We're home again and settling in.  (I haven't taken any new pictures, so here's an old one from the hospital.)   David seems very happy to be home and the rest of the kids were happy to have us back, too.  We had just one prescription glitch - that I'm still trying to sort out - but other than that it was a very smooth transition home. 

I'm going to take David for lab work today and Friday.  If all goes well, they will remove the PICC line on Friday at a clinic visit.  It's supposed to be very easy, and I look forward to not having the PICC line to worry about.

I did get to talk to the doctor one more time before we left the hospital and he told me he was very pleased with how David's lab results looked.  At this point we know the medicine is safe for David to take.   In 4-6 months they'll do another set of x-rays and see how his bones look.  The doctor predicts, based on the current lab work, that David's bones will actually be stronger in 6 months.  That would be GOOD news!

Going home

Looks like we're going home today once the weekend labs are run, which is apparently at 11am. The doctor, he is a very busy man, I know because he told me. Still, since I asked he's really going to try to stop by, either that or write really detailed instructions for the nurse. Actually, I'm fine leaving without seeing him again if they don't adjust the dose. However, since he mentioned that he was considering changing it, we'll have to see how things go. I did get the answers I wanted about labs and other details. It turns out they *do* have a plan already made up, and it's simpler than I thought and includes an appointment to have the picc line pulled out on Friday.

So, I'm feeling good about going home.

Home Tomorrow!

The doctor stopped by this morning to say everything looks good and we can go home tomorrow after they see the labs they've got waiting to run. Hard to say when that will be. The labs should be done by noon, he said, but then they'll have to put in discharge orders. I know from experience how slow that can be, so I'm prepping myself to be patient. I'm hoping to be home before school gets out, but before supper is more realistic, I think.

When we get home, the medical supply company we use will come by with supplies and training on caring for the picc line. I wish I could get that training at the hospital *before* I'm alone with the picc line, but I understand this way they can do the teaching with the actual supplies we'll have. In the mean time I'm asking a lot of questions.

So, we're in the homestretch now, and I'm ready to go home!

It's all in the details

So here's something I didn't know, and David's doctors didn't know either... The lab will only run urgent lab work on the weekend. Of the two things they are tracking, only one can be considered urgent. The other they will continue to draw, but won't run until Monday. Huh. That's interesting.

So it's looking like we'll stay until they can get those non-urgent lab results on Monday. I did get some answers about lab work from home - it will probably be every other day. That's a relief compared to what I was imagining. I also talked through some things I wanted to know for when we got home, like what We should do if David has a seizure. So, now that I'm feeling better about going home... we'll probably be here an extra day.

David seems more awake today and he's back to moving around. It's nice to have him back!

Charts & Graphs

I like numbers, so I've been graphing David's lab results for two of the things they are watching the closest. It had gotten to the point that I thought I could predict what would come next. When they announced this morning they were keeping the med dose the same, I figured I could predict what we'd see on the labs.

I was wrong. The doctors were surprised, too. So, the dose of the new med has been cut in half tonight.

They still are talking like we'd go home on Sunday, but I'd feel better if try were done messing around with the dose. They've told me we don't have to leave until we're comfortable.

David has been very sleepy again today. Still not sitting on his own, but he did do hand motions to some of his favorite songs and was happy while he was awake.

So we'll see what the evening brings.

Reality Sinking In

GivIng the new med twice yesterday went well. Today, for the first time, he's getting exactly the same dose the he got the day before, which is likely the dose he'll go home on. And it's looking like Sunday will be the day.

That reality is setting in now as I realize what going home will be like. Thinking through the mechanics of picc line care, the likelihood of him returning to school, and then there's the lab work... The doctor's won't commit to a lab work schedule, but the "week" at home with a picc line and frequent labs they mentioned yesterday was "10 days" today. The doctor thought once a week labs after the picc is taken out, but "hasn't decided" how often it will be with the picc. That makes me think they just don't want to tell me how bad/often it will be!

So, we're in wait and learn mode. Wait to see how he does on the dose he's at and make sure it's stable. Learn how to care for the picc line and how to cut, crush, and mix the short lived new med.

David is still sleeping a bit more than normal and too dizzy to sit up or crawl around. He's not signing or clapping by himself, though he is still touching the iPad. But these are things we expect when we adjust seizure meds like we did on Tuesday. Hopefully it will clear in a week or two.

Pictures!

I'm home to spend some time with the older kids, but while they are still in school, here are some pictures of the stay so far.

David's PICC line is under the white "stocki-net".  He can still bend his arm and play.  Hooray!

Here is David, post EEG with his leads still on.  He wore them all day, because they thought they might repeat the EEG.  (They didn't.)

Here's how we rolled.  David' in the seat, wirebox in the basket.  Wicked cord/dreadlocks hair.

David enjoyed sitting up and playing in his crib.  Especially with the mirror.

The Childlife Dept brough us the mat for the hospital room floor.  David didn't care about the EEG wires, he was all over. 

I picked up some yarn on a quick trip home and crocheted a PICC line cover.

One last big one, here's David snoozing.

Good News

I talked with the rickets doctors today (the ones who made up the plan) and got good news. David has done well with his first two doses of the new med, and he's not showing the side effects they were afraid of. They were waiting on a couple more results to decide if they like the dose he's at now, or if they will raise it again this afternoon. Once they settle on the dose, they'll keep him "a couple more days" to watch for cumulative effects. So maybe home by the weekend.

Of course there are a lot of questions about going home. Will he keep the picc line? How often will he need lab work done? How will they watch longer term cumulative effects? But I'm in no rush, so we'll get the questions answered before we leave!

David slept more on the new med and seemed dizzy, but was in good spirits. So he at least doesn't seem distressed.

"We're going to _______"

Communication is always an issue in the hospital. I have examples from yesterday of good and bad communication, as well as a no communication example.

Good communication
I asked for a nutrition consult, as I had planned with David's nutritionist at his last appointment with her. We're watching his weight gain, because it would be hard to learn to walk if he was wider than he was tall. She checked his records and got his weight and called me to suggest decreasing the amount of formula he gets each day. We discussed it on the phone. She brought me up a written feeding plan. We made some changes so it would fit our feeding and meeds routine at home. She submitted it to David's team of doctors and we were good to go. I knew what was happening, and even had input to the extent that it was needed. Yay!

Bad communication
The neurology team was very concerned with how David's EEG looked. They explained that they wanted to increase his seizure meeds, and they were so concerned that they wanted to do it immediately, through his IV. He seemed fine to me, but I was ok with their plan. Except they never did it. No IV meeds were ordered. No explanation offered. Just nothing. Then hours later, an order to do the increase of his daily meeds they'd discussed. That was a whole lot of "it's scary!" followed by nothing.

No communication
David's nurse walked in yesterday afternoon. She'd just gotten an order for a new med for David, a one time dose, ordered by David's rickets team. Really? That one was enough out of line that I got an apology this morning from the doctors involved.

All is quiet here. David is still sleeping. I expect a lot of that today, due to the increase in seizure meeds.