We’re going to use this blog to update everyone on what’s happening with Jonathan’s surgery preparation, surgery and recovery over the coming months.

Some basic info on how to use the site:

We’ve broken the site into 3 categories — General Info, Surgery Updates and Recovery Updates. This way you can click on the category (either in the sidebar to the right, in the dropdown menu or below each post it tells you what category that post is in and you can click it there) to get the latest info.

If you want to search, the box in the upper right will let you search this site. You can also click on the Older Posts dropdown to view by month or use the calendar to find posts by the day that they were entered.

You’re welcome to leave a comment on the Comments page or in response to most of the posts (a few of the initial posts are closed to comments, though). To do this, you’ll have to register (to cut down on spamming and robots taking over the site). It’s really easy/fast — there are links to register (or log in, if you already have an account) in the upper right of the page and bottom right of the sidebar. Also, if you click on “no comment” for a new post (that is accepting comments), it will give you the log in/register prompt. Once you’re logged in, you’ll just see a Leave a Reply box if the post accepts comments.

If you have any questions or something isn’t working right, just shoot me an email!

Pam

 

We’re in Phoenix

December 10th, 2009

We got in around 1:30 am, got settled in the room and we’re up in just a few hours for the 7 am hospital check in. Just wanted to let everyone know we made it up here with no problems. :)

kyanBabyHospital.jpg

Surgery is all set

December 10th, 2009

He’s in a private room (and looks like that will be the case for his recovery, too) and already asleep. Hopefully. :)

The official start time is 9 am, but they said they may take him back before 7:30 am. I think they’re pretty punctual at this place and there was talk of him getting up at 5:30 am. Ugh

Anyway, the angio went well and that’s a good thing because Jonathan’s last angio (ten years ago) was hell and included lots mentions of pain. He tells the story like it happened yesterday. :) So, the fact that this was pretty painless and a shorter recovery time (he was up in 2 hours) was definitely a bonus. We’re hoping that holds true for all surgery advances in the last 10 years and that tomorrow goes smoothly.

Per one of the neuro residents, the surgery will take “as long as it needs to take,” (he said he was repeating what his boss, Dr. Spetzler, always tells people), but that generally most fall in the 2-5 hour range. And he said the “minimum” stay is 2 days and the average is 3-4. So, we’re keeping our fingers crossed.

Think that’s all for now. Will post updates as they happen.

 

Room

December 11th, 2009

He probably won’t have this room post-surgery (ICU for a bit), but it should be pretty similar.

 

Kyan hanging out while dad showers

Thanks everyone!

December 11th, 2009

Just wanted to thank everyone for all the well wishes and for checking the site. It’s such a relief that I don’t have to wonder if I forgot to email or call anyone! And Kyan’s thankful, too – more time for mommy to entertain/distract/feed/hold/diaper/walk him. :)

Minor delay

December 11th, 2009 

Just wanted to let everyone know the surgery has been pushed back an hour — to 10 am MST. Jonathan’s potassium levels were a bit low last night and not sure if the delay is related to that or not, but things seem to be all set now.

He’s off

December 11th, 2009 

They wheeled him out around 9:45 am. We were told between 1-1.5 hours of prep time and then 2-5 hours of surgery.

In a weird coincidence, an AVM specialist/neurologist from UCSF was at the hospital giving a talk for the docs this morning. He may be an “observer” in the surgery.

More updates as they come.

 

Thanks everyone!

December 11th, 2009 by Pam

Just wanted to thank everyone for all the well wishes and for checking the site. It’s such a relief that I don’t have to wonder if I forgot to email or call anyone! And Kyan’s thankful, too – more time for mommy to entertain/distract/feed/hold/diaper/walk him. :)

They’re closing him up

December 11th, 2009 by Pam 

The doctor said it went well and they got the necrotic tissue and the old AVM. I’ll get paged again when he’s in the recovery room. And they hope he’ll be talking within an hour of getting out.

Just saw him…

December 11th, 2009 by Pam 

He’s in some pain, but he’s talking and lucid. He’s not saying much or moving his right side, but he’s also still dozing off in the middle of things.

He’s still in recovery, but they have a spot in the ICU – they’re just cleaning it. Not sure how long till he’s moved. We’re back in the waiting room because his nurse is “from Boston” (the reason according to another nurse – to explain why she’s so strict). :) We only spent 10 minutes or so back there.

The incision is in a straight line from the top of his ear to the edge of the top of his head – about 2-3 inches long. Looks a lot better than I thought it would.

Update: Kyan’s not in bed, but he’s sleeping in the stroller, so…

December 11th, 2009 by Pam Leave a reply »

Jonathan’s doing great. Talking and movement seem fine. He’s beat and resting, but no signs of impairment so far – just extreme fatigue.

Whew!

He spent about 3 hours in recovery (think they were waiting for a room in ICU) and got moved to his ICU room around 5 pm. He’s talking more, wanted food and seems to be in a little less pain. The docs think they got all the necrotic tissue and so far, they’re still thinking that it was a cyst in there with the dead scar tissue.

I spent some time in the ICU with him, but he was really tired and Kyan was passing out on my shoulder, so Kyan and I headed out to grab dinner and let Jonathan rest. They said we could stay overnight, but I think both of the guys could do with as much sleep as possible (Kyan had a rough sleeping night last night and has been fighting sleep all day). The ICU nurse seemed to think it was best for everyone, too — even though she told us we could stay.

Before we left, the nurse did some of the basic tests they do for head stuff — asking dates, location, president, etc. and then some physical ones (eye movement, strength, steadiness, etc.). He seemed to do all of them fine. He was feeding himself jello for a bit (with his right hand — the side that has issues when he seizes), too. So… with the limited bit I saw and from what the docs have said, it looks really good so far. No weakness on his right side, no language or cognitive issues. I’m pretty damn psyched and impressed. :)

More in the morning. They do a shift change around 8 am and asked that we not be there in the middle of that, so we’ll plan to be there around 8:30 am or so. I have his pc and his cell phone, so he won’t get any messages tonight, but will be bringing those back to the hospital in the morning since there’s every indication that other than fatigue and some nasty head pain, he’ll be pretty functional pretty soon.

I haven’t told him the latest about Tiger, yet. I’ll break it to him tomorrow (if he doesn’t watch the news before I get there).

 

Jonathan the morning after

December 12th, 2009 by Pam 

He took a tiny walk last night and a longer one this morning. He’s chatting with me now. He has a follow-up MRI as soon as they can get him in and then he’ll be in a regular room. The PT guy came in and said he was doing great and that he didn’t anticipate he’d need any PT. He said that based on what he sees, he’d guess that Jonathan will be discharged tomorrow or Monday. He’s not a doc, but he deals with brain surgery patients all day. Jonathan does have a small stutter at times, but even that seemed to get better in the hour that we were talking.

More when I can use a pc and really type (when he gets to his other room – we have a laptop and they have wireless here). Oh, and cell use is not allowed in the ICU, so no calls till later (and if his head pain allows it – sounds are amplified now).

 

He’s stuck in the ICU

December 12th, 2009 by Pam Leave a reply »

Only because he needs an MRI before being moved and they can’t get him in for an MRI before 10 PM tonight. UGH. I guess I understand, though — there are 48 neuro ICU units (not including peds, trauma or any other ICU units) and I only saw ONE empty bed in my walk around with Kyan (and almost all other patients look pretty bad off or just plain out of it, so I’m guessing any tests they need will bump his back since he’s doing so well).

I took Kyan out for a walk and some lunch and that’s when the doctor showed up, of course. Jonathan said he was only there for 60 seconds or so, but that he confirmed that he removed a big chunk (ping p0ng to golf ball sized amount) and that everyone’s happy with his progress. He said he’d most likely be discharged tomorrow or Monday.

Jonathan’s still in a fair amount of pain and nauseated, so we headed back to the hotel to give him some quiet time (and we’ll find a grocery store and get a few basics). Hoping the nurse can come up with a better combination of meds. Of course, we may mess with his stomach a bit since the only thing he asked me to get at the store was BBQ Fritos. OY. :)

My guess is we’ll stay in Phoenix till Wednesday just so everyone feels comfy about the recovery and then head back to Tucson.

 

Stuck in the ICU all night

December 13th, 2009 by Pam Leave a reply »

We were told tonight that most likely no one could review his MRI till the morning, so he’s going to be there for the night. One nurse even said that patients sometimes get changed to “floor status” but never leave the ICU — because there aren’t enough beds on the other floor. So, they get disconnected from the constant monitoring and then just get discharged directly from the ICU. So… we’ll see what happens tomorrow.

 

Thanks to the Nerd Fest guys…

December 13th, 2009 by Pam Leave a reply »

You know what you did. :) Very cute. :)

He’d probably prefer to be off biking with you guys… ok. Probably not. :)

Thanks!

 

Jonathan just got word that he’s getting discharged today!

December 13th, 2009 by Pam Leave a reply » Don’t know all the details, yet (Kyan’s got a bit of a cold and I had a sore throat overnight, so we slept as much as possible to try to kick it)… Heading over to the hospital in a few and will post the details when I know them. We plan to stay in the hotel for a bit more, just in case and to feel secure in being close to the hospital, but looks like he’s out. And not too soon — he’s pretty irritated by the place by now! There’s no shower in his room and they may be great at the surgery, but the nurses and the general hospital feel is the same — it’s like they never listen when you say something. :(

He’s out!

December 13th, 2009 by Pam Leave a reply »

Well, we don’t know if it was the bitching about being stuck in the ICU or not, but they let him leave the hospital today. :)

Two days after a craniotomy… Wow. Anyway, he’s still in some pretty nasty pain and feels dizzy and nauseated (we’re not sure if it’s just the result of the surgery or if the percocet is adding to that). He’s eating a little, but not tons. His speech is slow and labored. Both of those issues are probably partially the result of swelling and muscle pain — he’s got a bruise behind his ear and swelling in his neck along the jaw line — so it’s painful to open his mouth to talk or eat. I’m still in shock about how well he’s doing just two days after surgery, but I know he’s frustrated with the pain and with seeing some slowness. Also, his right hand isn’t as responsive as it normally is (dropping a few things and the dexterity isn’t quite there, yet). He’s also got some difficulty with assessing how much time has passed — generally thinking more time has passed than it has. I’m thinking most of these issues will resolve themselves as time passes and his body heals from the trauma of surgery, but we’ll see.

The doc wants to see him again in 7-10 days. We still don’t have a firm answer on whether the stitches are dissolving ones or not, so I guess we’ll find out tomorrow when we call the doc to make the follow-up appointment. I think we’re staying in Phoenix to make sure everything is still ok in the coming days, but that may change after tonight. Kyan’s in the room with us and because he’s not feeling great, he’s cranky. Not sure how Jonathan is going to feel if Kyan wakes him up with crying throughout the night. :(

I asked him about calls and stuff and I think he’s still too beat and in pain for that. He seemed overwhelmed when I mentioned it. He does have his BlackBerry, so he can see emails if anyone wants to try, but I wouldn’t suggest calling. He may answer and get frustrated that it’s still hard to talk (he said it takes a lot of effort on his part). Right now, he’s passed out (hopefully) in the room with Kyan (who has hopefully stopped crying).

 

Minor setback

December 14th, 2009 by Pam Leave a reply »

We’re in the ER. Jonathan had a seizure a couple hours ago. It wasn’t horrible, but wasn’t his smallest and this is the only way we can get him checked out right away. They’re doing a CT and plan to discharge him if that looks ok and neuro says it’s ok.

He’s up and talking and we just ordered Domino’s pizza (his idea/request) while he watches Law and Order reruns. :)

More when we’re back at the hotel, but we think he just overdid it today – walked from the hotel to the hospital and back and then was going through the 467 MRI scans when he seized. Right around the time he should have been taking his anti-seizure meds. Oy. :)

He’s off getting the CT now.

 

He’s back in…

December 14th, 2009 by Pam Leave a reply »

It’s not as bad as it sounds, but it’s not happy.

On his way to get the CT he seized again. And like all good ERs, they automatically drug you up when that happens, so they put a bunch of lorazepam in him. Not sure how much, but for Jonathan, the standard 1 mg makes him pretty out of it.

So, when the neurologist saw him, she wasn’t happy that he was so out of it (slurred speech, slower reaction times and a little off balance when walking). None of this stopped him from eating the pizza, though. :) And, there’s no way to know if the symptoms are a result of the lorazepam or the result of having 2 seizures (he was mostly ok about an hour after the first seizure — when we were ordering pizza and all that). She came out and said that some people seem like they’re drunk when they’re given lorazepam (which is close to how Jonathan has seemed on it in the past), so… But, she was pretty insistent on having him stay the night so the epilepsy neurologists can see him in the morning. She said there would be no other way to see them other than getting admitted (that they have no open appointments for months) and we wouldn’t mind hearing what they have to say compared to the Tucson doc. We thought they might do some more tests to see about the new seizures, but they ruled out an MRI (since he just had one Sat night), so it’s basically to talk to the docs in the morning and they’re talking about upping his meds. We’ll be asking about making that a temporary thing since everyone’s pointing out that lack of sleep and food (he’s missed out on both since the surgery) could cause seizures and he may just need lots more rest and food to get back to not having seizures. And they plan on giving him some drugs to really make him sleep tonight. He just started getting a decent amount of food in him toward the end of the day, but hasn’t eaten any real amount of food since Thursday night (the pain from moving his mouth wasn’t helping).

We’re also going to see what they have to say about the language stuff — that seems to be a more prominent issue since the surgery. He had some real difficulty speaking about 15 minutes before his 1st seizure tonight and after the 2nd one he never fully regained his ability to get the words out — he said he knew what he wanted to say, but couldn’t get the words out of his mouth correctly (again, unsure if the lorazepam was aggravating his issues).

Anyway, that’s the latest. Pretty relieved we were still here, though it doesn’t sound like we’ll be getting any earth-shattering news tomorrow. The neurologist on call pretty much told us they’ll be suggesting increasing the meds and that’s about it and that we should expect to get discharged soon after meeting with them.

 

He’s being discharged…

December 15th, 2009 by Pam Leave a reply »

It’s always nice when you hear a doc say “why are you here?” in terms of being admitted to the hospital. :)

His speech is still labored, but better. He’s walking fine. I’ll add more details when we’re back at the hotel.

 

Latest update – Tuesday

December 15th, 2009 by Pam Leave a reply »

So… he got admitted to the hospital last night essentially so he could talk to an epileptologist (at least, that ended up being the only real reason). That’s what he got this morning.

The doctor asked why he’d been admitted (he couldn’t see the need) and then went over his whole history (pre-AVM in 1999 till now). He believes Jonathan was having seizures before the AVM was diagnosed (one of the sympoms he was having — numbness and tiny periods of loss of words) and he isn’t sure the surgery addressed the seizures. But… since it’s so soon after the surgery, he said (as well as other docs) that his lack of food and sleep could have caused these seizures (or greatly contributed to them).

So, we’re going to take it easy for a while and rest and see how things go. His keppra level got bumped a bit, but that’s all that really happened from last night’s visit. We also have the ability to make an appointment with this epileptologist to explore other options (without having to wait till May to get an appt with him — he said that’s the current waiting time — he thinks we could get in in Jan or Feb).

One of the doctor’s suggestions was a surgery that involves something about cutting slices in the area where he believes the seizures start so that when they happen the electrical current can’t jump to other parts of the brain (either stopping or greatly reducing the seizure frequency and severity). They’d use the grid and the mapping thing that the other epilepsy doc in Tucson suggested. It seems like there’s a holy war (Jonathan’s term) in philosophy in how to approach these things — with epileptologists on one side and neurosurgeons on the other. One for tooling around in active brain tissue and trying to pinpoint where the seizures start (to curb the seizures/address the “epilepsy”) and the other camp is all about taking out the necrotic tissue (to curb the seizures, reduce the swelling) and seeing how things progress after that (with the possibility of more surgery down the road). This guy (epilepsy guy) was saying they’d “try” to avoid areas where they knew there was brain activity, but that they’d need to pinpoint where the seizures were starting. We’re not ruling it out, but it sounds like there’s more risk for functional loss with that surgery than the one he just had (one of the reasons we chose this surgery over the one suggested in Tucson) and if the swelling goes down in a few weeks to a few months after this surgery (one doc mentioned seeing the swelling go down over 6 months), his seizures may also be greatly reduced and there would be no need for the other surgery. I asked about the vagus nerve stimulator (less invasive) and he said that it was also a possibility, though it typically only works for 30-40% of patients.

So… in  a nutshell, we plan on going home tomorrow. Jonathan’s still a little slow and labored (physically and with speech), but we’re thinking that lots of rest and nutrition will help out. He may need to work on a few things, but it seems everyone (docs on both sides of the holy war) agrees that he should see improvement in some of the issues (speech and coordination on his right side) as the swelling goes down — the swelling from before the surgery and the swelling that was caused by the surgery.

We’ll keep everyone updated.

What’s going on now?

December 17th, 2009 by Jonathan Leave a reply »

First day back at home and Pam wants me to  not freak out at my remaining issues.

The biggest of all is NO feeling in my left right (oops!) hand. I can type cause I’m watching my fingers but my gold feedback test is putting a quarter, dime, penny, and a poker chip in my pants pocket to see if I can pull out a desired combination at will. My status as of today (12/17) is that I feel no end to the pocket’s fabric much less any of the objects in the pocket.

Trying new things today to jump start my “mouse-hand” like holding an off-balanced weighted electric motor (will find something in the shed) or dunking my hand in alternating hot/cold water. I will be carefull.  ALL YOUR CREATIVE SUGGESTIONS ARE WELCOME!

 

Xmas Eve update…

December 24th, 2009 by Jonathan Leave a reply »

Happy X-Mas Eve!

Sorry for the slow update. I was waiting to do some side-to-side Photoshop comps of the before and after the procedure. Here they are. Click the thumbnail to view the full undistorted image:


 

The status of  my recovery, as of today, is pretty good from what everyone tells me. I still feel very frustrated with the lingering symptoms no matter how small, including headaches, no feeling in the right hand, and seizures every 3-4 days so far.  I still seem to be fishing for words and speaking a tad choppy, although this seems to be getting better.

Again – THANK YOU ALL again for all your support. We never planned on chatting with family and attending company holiday parties.  I think I’m gonna have my first drink in prep for Santa, fingers crossed!

 

Jan 6th stitches

January 6th, 2010 by Jonathan Leave a reply »

“Disolving stitches” my ass! We were two weeks over the estimate so Pam pulled them out last night with tweezers and a toenail clipper. Better not get foot fungus in my head hole.

 

First post surgery consult

January 25th, 2010 by Jonathan Leave a reply »

Just got back from the scene of the crime. Seems like years since the brain scooping on Dec 11th. In a nutshell, the lead guy said I’m on track to being fully recovered — 3 months post surgery — leaving a month or two to go. Lingering issues are still the gimpy right hand, tiredness, and choppy speech. A new problem I discovered is that changes in altitude feel like an ice pick in the ear. Mt Lemmon at 9,000ft last month was awful and this weekend in Prescott at 5,000 felt like the worse tequila hangover. No air travel for me for a bit. I should be able to decrease my pill count soon, as well.

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