Blogging Molly's Chiari I Malformation brain surgery. Most recent updates top of each section.
Section one: Updates on Molly, surgery, hospital stay, & recovery.
Section two: Updates on me, my experiences, reflections, & photos.
- Twitter -- Immediate brief updates. Links to camera phone photos.
- Centro Photos
-- See what we see through camera phone photos.
- Artistic Photographs
-- Best quality photos, but updated only
2:35pm <> A couple of brief updates. First, we must add because I don't think I've said it so far that the Hilton Our towels at home are exfoliating scrubs compared to them. We almost took one to give to a pregnant mom as her baby's snuggle blanket.
Oh, how's Molly? Good question. Molly is exactly where her doc said she should be. She is coming down off of the steriods and looking and feeling exhausted. She's in bed a lot, resting, healing. Me? I'm doing dishes, cleaning, buying & making food, and searching for a little time to be a pastor. :) God is taking care of my wife and the rest of us. We are very blessed.
8:21pm <> Molly is fast asleep, the kids are still up messing around. I'm still keeping them home tomorrow. There's just too much to be done and everything is too hectic to get them there in the morning. We all need a break.
I picked up Molly's meds, including a steroid (strong anti-inflammatory). It's the steroid that is probably to blame for Molly's pep. It really helps. Plus, it will really help her to beat Lance in next summer's Tour de France. She beat me at arm wrestling earlier.
Just so glad to be home with our kids, and even with our cat. I'm strangely more affectionate toward Calvin post-surgery.
We are getting the feeling that Molly will have to wait a couple of weeks before really knowing how she will do with relief of chiari symptoms. She has started having the "jolts" a little today, but nothing major. But the doctor said even prior to today that she may regain some symptoms after the steroids taper off. She will likely have some confusing days ahead for a couple of weeks because of the inflammation the foreign substance will cause. At least that's how we understood the doc.
So if we start talking about some symptoms, I guess the call is to not panic until a bit of time passes. The jolt is the only thing we've seen so far, and it was there after the last surgery when all other symptoms were gone. So no worries yet.
Now, as for things we forgot. I failed to mention that when Dr. Frim put in the stent (tube) he attached it to the brain via what he called a "micro-stitch." He said he's one of the few doctors who do that. So let the stitch/sewing nicknames begin! I like "Steve'o and Stitch." :)
Molly also saw and talked to several nurses from last year. Pretty cool. We even talked to the one who so famously ran Molly into a private room when we needed one so much. It's neat to see people who we remember and who remember us, but we told them we hope to NEVER see them again.
I just want to add that au bon pain has a killer onion dill bagel. Delicious. As we remember other stuff I'll add them here.
6:48pm <> We are home and I'm about to head out and get Molly's stuff from the Pharmacy. Quick trip home and the kids are great (all but the part about going back to school a day early!). I caught Molly organizing clothes in the boys' room! Shameful. I made her rest instead. What a woman. Too bad for you that there is only one of her...and she's mine!
Thanks everyone for praying. We were talking on the way home about a note on the little things I missed mentioning along the way. I'll try to get to that tonight or tomorrow. I also want to update you on Molly's symptoms and what the next few days hold for her. And then tomorrow my Music Monday post will be going up and the blog will go somewhat back to normal.
Thanks to all my readers. You have made the last couple of days more full for us through your prayers, comments, and encouragement. And together we have seen God build a network of pray-ers around the world, who He has responded to with His favor.
2:31pm <> Molly is in the process of finishing up here, then changing into her clothes, then I'll be bringing the van around and picking her up. Could be home at 5-5:30pm-ish, depending on how fast the nurse gets stuff moving, Sunday traffic, and how long it takes to get the kids. Can't wait to get home.
12:54pm <> GUESS WHO'S GOING HOME!!! WOOHOO!!! Dr. Frim and Dr. Ricky Wong just stopped in and they are sending Molly home. Who's pumped? We are, that's who! Now I'm headed to the International House to see if I can get my money back for tonight. Or maybe I'll postpone it and we can stay the night for our post-op appointment in a week and a half. Or maybe they won't refund me and I'll just go home. Whatever. We are just so excited to be going home. Should be a couple of hours or so before the orders go through. If possible I'll update right before we go.
11:28am <> Molly finished a walk up and down the hallway, first with the nurse, then with me, then without holding on to anything. Outstanding! Seriously, she's doing EXTREMELY well. These signs are awesome. And she hasn't had a single "jolt" (a chiari symptom that she had). Really great news so far.
11:20am <> Just a bit ago Dr. Dey and Dr. Yassari came in to see Molly. Dr. Dey doesn't read my blog, so I have lost all respect for her. :) Ah, just kidding Dr. Dey! You've been a real encouragement to us and have always provided info we've needed at the right time.
Dr. Yassari then talked briefly with Molly and was very impressed with her recovery. He said her neck range-of-motion is outstanding for this soon after surgery. I think his words were "better than good" movement. Awesome. Then Dr. Yassari said that she may go home TODAY! Yes, you heard that right. Maybe home 48 hours post-brain surgery! We never even thought that was possible, but honestly Molly is way better now than at any point in the hospital from last year. She's better now than after leaving on Monday and spending two days at home. That's hard for us to believe, but it's true. Thanks for praying! Woohoo!
Now, it still may end up being tomorrow. And if so that's just fine. I've already paid for another night for me at the International House, so we're good. I doubt I can get that prepaid $70 back. :( Bottom line: we want everyone to be confident in doing what's best. But we would obviously love to be home and be with our kids.
2.10pm <> Mo
lly is looking at a menu. Good signs of another step in recovery. She has also said she feels much better after this surgery than the previous one.
12:12pm <> Molly is sleeping a ton. Very happy about that. Gonna get out, get some lunch, take some photos, check on housing for tonight, and who knows what else!
10:55am <> Dr. Frim and neurosurgery resident Dr. Yassari (I think he's in his 6th of 7 years of residency) just stopped by ICU. Dr. Frim encouraged Molly to watch college football, which makes me think he said that for my sake. Thanks Dr. Frim! He said Molly will stay in ICU until tomorrow, which is longer than expected. But it seems clear the reasoning is that very few surgeries are done on the weekend, so they probably won't need the room, and it's much more quiet and comfortable in ICU. After a long night in the noisy Recovery unit, this is a nice way for Molly to get a lot of rest.
Dr. Yassari was talking about how he remembered Molly from last time and how he read my blog about the surgery. I didn't know he even knew this existed, so that's pretty cool. I just googled "Dr. Yassari" and my blog is the 3rd hit! Awesome. Honestly, we've really liked all the doctors Molly has seen at the University of Chicago: Frim, Yassari, Yamini (haven't seen him this time, yet), and some of the younger residents like Dr. Dey and a few others I whose names escape me.
10:31am <> I love it! Molly won't shut up. Geez girl, get some rest! Love to see her awake and acting normal-ish.
She is still experiencing some numbness in her hands and feet. It can take some time for symptoms to see much relief, especially since there will be significant swelling from the surgery. But we'd love to say we haven't seen any old symptoms. Pray that they will be banished!
9:45am <> Molly is in ICU now. Going to see her.
9:15am <> I tried to give Molly as much chance to rest last night as possible while still being around regularly. She still has the typical post-surgery exhaustion, but has some increasing pep. I really think she is doing well compared to last time around. I just talked to her on the phone an hour ago and she was sitting in a chair. Very cool.
That said, she is STILL in Recovery. Much of last night she was the only patient in Recovery. Through the grapevine I heard that it wasn't because all the ICU beds were taken, but because there weren't enough ICU nurses to go around. Well, there were enough to go around for every patient but one...Molly. Which means Molly is tougher than all the sissies who need 24 hours of ICU. They can have their TLC and Molly will just sit up in a chair 18 hours after surgery and act like nothing happened. When the nurses ask Molly how much pain she's in, Molly says, "My feet are sore from jogging through the hallways?" When the nurses ask if Molly needs more pain meds, Molly replies, "I've saved all the pills you gave me and built a full size replica of Wrigley Field with my eyes closed." When the nurse asks Molly is she needs to lay down, Molly insists, "The brain surgery itself was so restful that I can't possibly sleep again already." Yeah, you heard me. Molly is tough. :)
I'll let you know when something changes. Should be any time now.
5:24pm <> No news. Molly is still listed at "Post-Op" and waiting for an ICU bed. Haven't seen her since 4pm.
4:02pm <> I just left Recovery (post-op) where Molly was very groggy. She must have hounded the nurse until they let me in! When I found out earlier that I probably wouldn't see her for a while, I decided to grab some food. I got in only only three bites when I got paged back and sent to Recovery. So lunch/dinner had to wait.
Molly is in a lot of pain, more than last time I think. She has thrown up a couple of times, which was a big issue last time. I think they've figured it out, though, through a different nausea medication. Despite all this Molly is still full of life. For example, the dude in the bed next to her had a post-surgery urge to take a dump. Oh my, I've located the bog of eternal stench in the colon of U of Chicago surgical patient. After the loud grunts and the first hints of fog Molly looked at me wide eyed and said, "Run!" Even after brain surgery Molly is looking out for me.
Pray that an ICU bed would open up soon.
2:18pm <> Word is that Molly may be in recovery (post-op) for some time, just like last year. There is even the possibility of staying the night there. Reason? ICU is completely full for the moment. I'm not sure when I'll get to see her.
2:00pm <> Just got off the family waiting room phone with Dr. Frim. Molly is waking up and all went well. He said there was some scar tissue around the patch he put on last surgery as well as scar tissue that fused together the cerebellar tonsils of her brain. He pulled apart the tonsils and cauterized them a bit so they wouldn't fuse together and close up the space again. He also put in the stent, as mentioned before, in the 4th ventricle to aid spinal fluid flow. Then he tried to make sure the space he created in the last surgery remain as open as possible as he closed things up.
We learned this morning that when brain surgery is done scar tissue is a very common problem. The brain doesn't get exposed to air so when surgery happens a person's brain will start to scar as a defense. Different people react with different levels of scarring. Molly obviously had enough scarring to create new problems, and we hope this will be a significant remedy. We also learned this morning that scarring can happen around a stent and cause it t
o get clogged at some point. We hope that would be a long time from now.
As best I can tell the signs are good for this surgery to have a very good effect. The incision is going to be slightly longer, as Dr. Frim needed a little more space to explore a bit and make sure there wasn't something else he could do to help. Thank you so much for praying! We are very thankful for all of you.
12:57pm <> Wow! I was just told by the receptionist in the family waiting room that the surgery nurse called and said the surgery is nearly over! How do you finish a surgery that much faster than expected? Maybe Dr. Frim just knew something that the other pre-op folks didn't know. More as soon as I know more.
12:50pm <> Sorry for a later-than-expected first update. Twitter has been a perfect place for most of my updates, so make sure you follow there. There are lots of pics there already.
We stayed last night at the Chicago Hilton, 18th floor. Beautiful place with a view of Lake Michigan, Navy Pier, Soldier Field, and the museums (Field, Science & Industry, Adler Planetarium). I'll see if I had any photos turn out later on. We watched a movie and tried to relax. Difficult to do.
We both woke up too early this morning, a bit restless. Showers, some news on TV, no food or drink of course. Checked out and paid cash thanks to some very faithful and loving church members. Drove out and made it to the hospital in 15 minutes. So easy and convenient! Very thankful we stayed downtown.
Showed up at the University of Chicago Hospital on time, to the family waiting room. A little paperwork and then to pre-op. Molly got into her gown, more paperwork, 3 tries at an IV thanks to Molly's veins, still more paperwork, a hit of something to relax Molly, a kiss and she was wheeled off. If you haven't seen Molly choosing the stent for herself, it's funny. It was all her idea too.
The surgery didn't officially start until 11:49am, a lot later than expected. I heard the surgeon was unwilling to start until he beat his fastest time at Minesweeper. Tall order. Now, just waiting. Should be about 3 hours, so 3pm or so. I'm supposed to hear something at about 2 hours.
2:25pm <> I paid for 2 nights in advance at the International House (not "Of Pancakes," but the place I slept last night). I went and got the stuff out of my room and asked if they could give me money back for tonight. I wasn't all that optimistic. Barbara, the nice lady behind the desk there, was so excited that my brain surgery wife is going home early that she didn't even make me pay the $30 for late check out. Very cool. We'll get a check in the mail for reimbursement in a couple of weeks.
11:54am <> As I've been praying today for my church I've been thinking about how thankful I am for the folks I pastor. They have been praying, supporting us, and doing what needs to be done while we are out of pocket. I'm very thankful this morning for Jeff Temple who is preaching. He's a good teacher and a good friend. His family is also keeping our kids. Jeff's wife Saralyn has been so sacrificial as she has had 7 kids (her 3 and our 4) to care for. What a great family. I'm also very thankful for good friends from Joe Thorn's church, Rob and Shannon, who are leading worship as our worship guy is away. Thanks to all.
12:06pm <> Put some new photos up on Flickr.
11:22am <> Just added some blue text highlights so you can more easily follow what's happening at a glance.
11:11am <> I forgot to mention something that happened at the Chicago Hilton on the morning of Molly's surgery. It's not important, but it's funny and indelible. Our room had a beautiful view including a view across the courtyard of more of the Hilton building. On Friday morning a lady in a room across the courtyard, curtains wide open, decided to parade around in her room in full view with nothing on. Trust me when I say that I wish, I SOOOO wish, she was fully clothed or that the curtain was pulled. Not good. But it made for a moment of humor for Molly and me on a very stressful morning. Strangely, the event is worth recording for all to read. :)
9:45am <> I know some of you will kick me in the teeth for this, but yeah, I slept in the van last night. Well, not much. I took 3-4 short naps during the night and it was very helpful. I'm not that tired and I think can get through the day. I'm hoping to get a room at the International House on campus tonight and tomorrow night, but they are supposed to be very busy as there are many events going on. Pray I can get a room!
5:30pm <> For some reason I can't get Twitterfox to work right now. It's been useful only occasionally. Mostly using the phone to post to Twitter, and my phone is charging at the moment. But there isn't all that much to Twitter right now anyway.
5:24pm <> Ate a Greek pasta salad for lunch/dinner. Really good with rotini, tomatoes, black olives, feta cheese.
Otherwise I'm beat. Mental, physical, emotional exhaustion. But the chocolate dipped shortbread cookie helped. :)
2:18pm <> Feeling relief after hearing that Molly is out of surgery. Hungry and looking for food after this update goes up.
12:50pm <> After Molly went into surgery I returned to the family waiting room with Molly's stuff. The receptionist said my brother came to see me. Wasn't expecting that. For those who remember last year, I have no desire to sit with someone during the surgery. I like to be alone, praying, blogging, etc. But, if he's here he's here.
Since he wasn't in the waiting room I had to look for him. I needed to eat anyway so I headed for au bon pain. He was sitting just outside. He said that Dad warned him NOT to come and sit with me, but he chose to risk it since it was only for a few minutes. Come to find out Scott was already in Chicago for the Illinois Municipal League convention...which is held at the Hilton! How awesome is that? He was staying 10 floors below us last night and none of us knew it. I also found out Scott was probably eating and we walked right by him. Pretty cool.
He and his wife will also be at the Hilton tonight and said I could crash there if need be. Also pretty cool. Good of Scott to stop by. Nice to see a familiar face just as I was pulled away from my wife. Thankful for my brother.