Section one, "Operation Chiari Freedom Updates" -> essential details about Molly, surgery, and recovery. This is the first and easiest place to keep up to the moment on what is happening with Molly.
Section two, "The Husband Updates" -> stories, reflections, photos, etc.
MONDAY, JULY 16th
4:30pm <> We are home. The drive home had very little traffic. We made it in under 2 hours. I think we arrived at 3:30pm or so. Molly didn't much enjoy the ride. It was difficult for her to sit comfortably for that long in stressful traffic.
She is now in bed and I expect her to stay there most of the time until the kids come home tomorrow (not sure what time yet). So if you are local, she will not be ready for visitors for at least another day or two.
This is my last update. We appreciate the many comments and can't possibly reply to all of them. Molly has heard me read most of them aloud, but won't remember much. I know that when she's rested and up to it she will be reading all the updates and all the comments again. She was so happy to hear from you all during her hard days and nights. We appreciate your prayers most of all. We have a God who hears us when we cry out to Him.
Operation Chiari Freedom has been a success. Now we move to many weeks of recovery. As you think about Molly, please pray the symptoms of her Chiari will go away and she will continue to get better. We'll be sure to keep you up to date, but with less frequency. :)
God bless you.
12:28pm <> We're going home! A nurse practitioner just talked with Dr. Frim, who is in surgery all day, and said we are good to go. I have to watch Molly for apnea, but otherwise she is just tired a lot and has some pain, and that's to be expected. We will either be at Dr. Frim's office this Thursday or next Thursday to get the dressing off of the back of Molly's head (see photo) and then she will have the "ok" to wash her hair and stuff.
Thanks for your prayers, this is the last report from our south Chicago outpost. We should be leaving in the next 30-60 minutes (Lord-willing) and be home by, oh say 4:30pm or so-ish.
12:06pm <> With Molly resting most of the time, and the possibility of coming home today, I think it's pretty clear that having visitors really isn't an option. Plus, anyone who wants to visit is from 2-3 hours away and it just wouldn't make much sense. So thanks for your desire to come here, but it just didn't work out. Next time Molly has neurosurgery she will be sure to squeeze you in.
11:56am <> Nothing new. Molly is sleeping a lot. No word from Molly's neurosurgeon, Dr. Frim, or anyone else for that matter. As soon as we hear I'll send you all an update.
9:48am <> Molly walked up and down the hall with a physical therapist to see how she's doing. It's the first time I've seen her walk without having to hold on to something since this whole deal began. Her balance is still an issue, but Molly has ALWAYS had balance issues. Dunno if those will change or not. The PT didn't seem too concerned about it, but enough to prescribe physical therapy after the hospital stay. She did say to take a couple of weeks to see if it's needed or not. Things could very well get better as the swelling goes down and as she learns to trust herself walking again. She also went up and down some stairs and did just fine. Slow and steady, but just fine.
9:10am <> Molly is resting a lot this morning. They woke her up many times last night and she is still quite tired.
8:10am <> Molly is up and other than a bit of a headache she is doing fine.
The only concern this morning, as the neurosurgery residents stopped by, has been the problem Molly has had with a sleep apnea type thing. I noticed Molly with this a lot that first night in ICU, but I haven't noticed it since. They may be putting a breathing thing on her just to see how she does sleeping. I feel like there isn't a problem anymore, but they are being a little more cautious.
Otherwise, it's possible that Molly could go home today! One of the neurosurgeons asked her if she wanted to, and I told them yes. :) We'll go home when they think she's fine, and if that's today we will be very thankful.
SUNDAY, JULY 15th
3:22pm <> Molly is resting very comfortably at the moment. We went for a hallway walk a bit ago. She did fine, slow, but fine. She's eaten twice today, more at lunch than breakfast. Many improvements today.
10:58am <> Molly wanted everyone to see the comfort blanket our daughter Sarah made for her recovery. She worked on it for weeks with a neighbor/church member (Sharon) who has been such a blessing during Molly's ordeal.
Sarah, Mommy has this in the bed with her at all times because she loves it, and you, so much. Thanks sweetie! Tell the kids that we love all of you and will talk with you soon.
10:10am <> Guess who is starting to feel a little better? Molly. Headaches are still solid, but not nearly what they were. She is keeping medicine down and just had some breakfast (a little bit of breakfast sandwich, mostly some scrambled eggs). Big steps for her. She also is a little more peppy and conversational.
SATURDAY, JULY 14th
9:49pm <> Very long, very hard day. Molly's getting some medication right now, including a shot in her stomach (blood thinner). Ouch. My cot is set up and ready. So glad to be in the private room. Hopefully things will get a lot better for Molly tomorrow.
One last word. Molly is NOT ready for visitors yet. Talking to people makes her throw up, including me! So please don't stop by until I give you the "thumbs up." And I will when she is doing better.
G'nite. Enjoy the Lord's Day.
8:05pm <> Molly is still terribly nauseous. Her head is throbbing along with her pulse (your brain does that, you know). She is miserable right now and needs relief.
They are giving her two nausea medications now, and adding Benadryl to help with itching. I can't remember the name of the central pain medication Molly is on with her thumb trigger, but it is supposed to be 10x as powerful in pain relief as morphine. That means that even as that medicine is probably making the recovery more miserable (vomiting and itching), it's so much better at pain relief that those side effects are acceptable. Ugh.
6:02pm <> I just want to add that the private room is such good news because I was thinking of going back to Woodstock tonight, or at least a hotel. Molly just doesn't feel comfortable having me away, so she is really excited. And since I've been sleeping in my van until now, I'm excited too!
5:35pm <> Sheesh, you guys are persistent. God is getting no rest because He has now placed Molly in a private room! We told our nurse and she said there probably isn't one available. Five minutes later she comes in and says, "We're moving! Let's go! It's just across the hallway."
FYI, Molly's room number is TS407-1. A few folks have asked about sending flowers so I thought I would put it out there. Molly really has the desire to eat piles of hot wings, so you may want to send those too. ;) And please DON'T CALL the room. It will just be irritating at this point to my nauseated and exhausted wife. Email and blog comments are getting to her fast enough.
Thanks for praying.
4:34pm <> Molly put on her glasses a little bit ago and her vision is very blurry. That has freaked us out. But a visit from the neurosurgeon has assured us that it happens to some Chiari patients because the pressure in the back of her brain has been decompressed and her brain is learning not to compensate for the pressure. She will need a few days to adjust. Please pray her vision will be restored quickly, her headaches will decrease in pain, and her nausea will go away so she can start eating again.
2:41pm <> Molly is in a regular room now. Feels good. She has a roommate but she is leaving in minutes, so we will have no one in here for a while at least. Still hoping for a private room at some point, but we aren't holding our breath. She is a little more peppy, though still struggling with bad headaches and nausea. She almost threw up after the bed ride to her new room. But the fact that she came close and didn't hurl is a good sign, I think. She also wanted me to let you all know that her nose it itchy.
I'm sitting in a high-back chair next to Molly's right side. We are on the window side of the room. That's nice because Molly hasn't seen the sun since early Friday morning.
9:57am <> Our new nurse (I can't remember his name) said they have a bed for Molly already, but not in a private room. We know they are hard to come by, and may be able to pick one up later or on another day. Our request will stay and they will let us know if one opens up. But for now the plan is a normal room. We'll work with it.
9:43am <> One of the neurosurgeons we have met with before, Dr. Yamini, has met with Molly and he feels all the symptoms are pretty typical. He felt good about how she is looking and feels she can move to another room today. The neurosurgery residents met with Molly and thought she may like to stay in ICU longer, but I don't think that's what's going to happen. I think by later today Molly will be in another general hospital room. Hopefully a private room.
7:38am <> Beverly is on her way out and a new nurse will be taking over. Molly is still in a lot of pain. She has been given calcium, and is still getting magnesium and potassium. She's sleeping now.
5:09am <> Molly's ICU nurse, Beverly, has come in with new doctor orders to get Molly's electrolytes up. Her labs show she is very low in calcium, and somewhat low in magnesium, potassium, etc. She said that when these levels get low the heart doesn't do well. Her BP has been a little low as well as her heart rate. Molly is also having some significant headaches. She says the pain is 9/10. Beverly just said she is going to call Molly's doctor to see if anything can be done, but she can't take Ibuprofen until later on today or tomorrow. I don't assume there is anything too major to worry about, but things could be better.
FRIDAY, JULY 13th
9:32pm <> Molly has been nauseous quite a bit. Dr. Frim said this was a possibility. Other than that she is doing ok. It really hurts her to move her head, as expected.
Molly's overnight nurse is Beverly. Her approach is both structured and kind. She said I could stay in the room with Molly all night if I like, but I can't sleep in here or I get kicked out. That works fine for me. I'm going to try for a couple of long naps overnight and work on a full night sleep tomorrow.
5:46pm <> After 4 hours of waiting Molly is finally in ICU. They brought me up to recovery (where they shouldn't bring me normally) at about 4:30pm and then walked down with her at about 5pm. She looks great and has been both smiling and throwing up. I'm now sitting next to her in ICU. She has ALP (Alternating Leg Pressure) wraps on her legs to prevent blood clots, oxygen in her nose, IV's in both arms, those awesome heart monitor sticker things all over her chest, and a morphine pump in her right hand. Nice. The back of her head has a strip of tape covering the incision and the back of her hair is now pink from blood. Her very friendly ICU nurse is Carol. The photo is from my cell phone and taken in the recovery room.
3:24pm <> Talked with the recovery room nurse and they are still waiting for an ICU room assignment. She didn't know how long, but she said Molly is doing fine and sleeping. Molly got out of surgery at 1pm, officially.
2:02pm <> I just talked with Dr. Frim a few minutes ago. He said the surgery was as boring as he hoped it might be. Uneventful. Happy to hear that. He said Molly is recovering fine so far, looks comfortable, and is awaiting a room.
Now, as I said on my 1:30pm husband post below, we expect her to go into ICU. But Dr. Frim said that the bed Molly was supposed to get in ICU was taken by an emergency neurosurgery case (See my 12:12pm husband update below. I assume that was the emergency case.). And I'm not really sure, but it sounded like it might mean there won't be an ICU room opening up. That doesn't seem right, and it may just be the way I heard it, but who knows?
So we await a room. I assume we may be waiting longer for a room than previously thought. 3 hours? More? Up in the air. Would you mind praying her into a room asap? That would be helpful.
12:50pm <> The family waiting room attendant must read my blog because 5 minutes ago she asked if she should call the surgical department for an update since I haven't heard anything. So she brought me out and asked me to wait at a house phone for a call from them.
As I waited surgery called (maybe they read my blog too) and said Molly is coming out of surgery and is on her way to the recovery area where she will be for post-op observation and where she will wait for a room in the ICU. They expect Molly to be in recovery for 1 1/2 - 2 hours.
Thanks for praying and I will update as soon as I know more.
12:25pm <> I expected to hear a mid-surgery report from the doctors, but didn't get one. Not too thrilled about that. Also should mention that the surgery has now passed over the 3 1/2 hour mark (the duration we were told to expect). Not worried, but not exactly at ease either.
10:39am <> Nothing new, just waiting and praying.
8:57am <> Update from the family waiting area attendant, who just heard from the doctors. The surgery started at 8:45, so the timing of what is happening in the surgery from my previous update is probably actually happening now.
8:10am <> We left on time this morning and were way early (since there was little traffic). We were happy being early and everything else went as planned. Several nice people prepped Molly for surgery in pre-op. Sally, the resident anesthesiologist for the main anesthesiologist, tried three times to get an IV started and couldn't get it. It wasn't a problem for Molly since she was actually encouraged that Sally was younger and someone she could identify with. Honestly, Molly does have small veins. :)
Right about now Molly is bottom up with pins in her head and a metal framework of some sort propping her head up. I'm also sure the incision is open and they are working their way through tissue and muscle on their way to the bottom of the skull and the top of the spine. Soon they will be sawing through her skull to thin it out and then remove it.
THURSDAY, JULY 12th
6:30pm <> We received and email from the nurse a little bit ago. Surgery will begin between 7:30 and 8:00am. We will be getting up at 2:30am and leaving by 3:30am to get there by 6:20am.
================================================
MONDAY, JULY 16th
9:40am <> The last 24 hours or so have been good. I'm not really feeling concerned for Molly as much as I am eager to see her feel better. I think that when she gets home (maybe later today???) she will get a lot better sleep and will actually recover faster.
SUNDAY, JULY 15th
3:11pm <> Hey all. Thanks for your continued prayers. I wanted to write more updates but I've been occupied.
Last night was great. The cot is comfortable enough, I wake up whenever the nurses are in the room to keep up with how Mol is doing, and then I got back to sleep easily. All good.
Molly has really been great today. Nausea is mostly gone, we've talked a lot, she's eaten two meals, and we've walked the hallway to get her moving again. She's sleeping now, peacefully.
I got Subway for dinner last night and walked a block down to Powell's Used Book Store (Hyde Park). Great selection of used stuff. I didn't buy anything. Maybe I'll go back :)
I got Molly some magazines today for when she feels well enough to peruse them. Picked up her clothing and makeup from the van and brought them to the room. Now I'm trying to figure out what to do while she sleeps. Hmmm...
SATURDAY, JULY 14th
4:32pm <> After waiting and waiting for Molly to move, her nurse said that it would still be a couple of hours. So at about 11am I left the room for a couple of hours to eat and nap.
I hit the UC cafeteria for some pepperoni pizza, a cake doughnut with chocolate frosting, and some Coca-Cola. Too much money, but a full stomach felt nice. I hadn't eaten since last night.
While eating I perused the UC hospital and campus map. I found the post office and the university bookstore (a Barnes & Noble). So after lunch I headed to the post office to send a letter to our kiddos and then to the bookstore to see what they had. Nice little B&N. I'll probably be over there soon to pick up some magazines for m'lady.
Then I went out photographing the area. See all my University of Chicago and hospital photos here.
Exhausted, I retreated to my van and crashed in a well-reclined seat for about 25 minutes. All of you who prayed and helped us get a van didn't realize you were also getting me a motel, did you? :)
Feeling more rested I returned to ICU to find Molly within minutes of leaving for her new room. It appears there won't be anyone added to her room for a while. So that's kinda like a private room, eh? We are going to ask them about the possibilities of keeping the room private for a while. I have seen at least two rooms totally empty so we may be in luck today.
Right now I'm sipping Canada Dry Ginger Ale with those little ice pellets like they give to Molly. I only drink ginger ale on airplanes, but I made an exception because it was free.
Despite my desire for Molly to feel much better than she does, we are both just so thankful for the many ways God has blessed us. Our kids are having a blast with family in Pontiac, Illinois and we get to be here totally confident they are being loved. We have everything we need, fully supplied. The doctors and nurses have been great. Thank you for your prayers. We know God has been taking care of us.
10:22am <> I'm really tired. Every time I think I can go get something to eat or take a nap, something else is coming that keeps me in the room. I had to wait for a long time for the neurosurgery folks to come by, now Molly is heading to another room and it's hard to know how long (or short) until we go.
5:35am <> Last night I left at about 7:30pm for something to eat. I had waited too long to get something at the hospital. Anyone been to Checkers before? We had it years ago. Good, greasy burgers and fries. Had to try it again. And since I had eaten very little all day, I decide to get the loaded fries. Yeah, I know. But wowwy weewuh, they were good. The burger? Meh.
I came back and sat with Molly for a while and then crashed in the van sometime past 10pm. No, I didn't crash the van, but crashed in the van. And yeah, I know. But with few housing options around and a strong desire to stay close, it was my best option. I could almost fully lay out with the back seats folded into the floor. I had two pillows to sleep on and had most of the windows blocked out so the parking garage lights wouldn't keep me up. Unfortunately it was the sweating and the loud noises that kept me awake, at least for a bit. But then I slept for about 4 hours and it felt good. I woke up, changed clothes, and headed back to the room. I made it here at about 4:15am. Hopefully I'll get a nap in later today.
Right now I'm just sitting here in her room, which is getting brighter as the sun rises, following the Tour de France online, making sure Molly keeps hitting the morphine button, and praying.
FRIDAY, JULY 13th
3:33pm <> I had to get out for a bit and grab a bite. Bagels and cream cheese at some nice hospital food place. Not a cafeteria, but a Panera-type restaurant. I also grabbed some parking sticker things that let me park in the parking garage at a discount.
I'm developing a headache from my stressful day, but I'll be alright. I'm having a hard time relaxing with Molly's room situation. I just really want to see her. Some nurse's voice over a phone telling me she's fine won't cut it. And I just want her to have a place. And I need a change of scenery!
Thanks for the comments, emails and text messages. They have been encouraging.
1:30pm <> While surgery is over, I realize this is still a very long road ahead. We have 24 hours (or so) in ICU coming up. Then a few more days in the hospital.
Obviously the most important issue is Molly's recovery, hoping the symptoms are relieved and hoping there aren't any post-surgery complications. One thing we really hope for is to get a private room at the hospital after her ICU stay. Without a private room I have to keep to the visiting hours (9am-9pm, I think) and probably will have to get a hotel. There aren't any recommended hotels within 20 minutes of here. But with a private room I will be able to be with Molly day and night, to stay the night here, etc. It will cost us some of our own money, but we hope it works out.
We can't save a private room, only ask for one when she is being moved out of ICU. And it's unsure whether or not one will be available. So please pray that we can get a private room.
12:12pm <> The younger couple is back, and they aren't as young as I thought. Donna and Alen are probably in their younger 40's and they are here with Donna's son William, who has hydrocephalus. He is now 21 and has all sorts of problems. He has had three surgeries (all neurosurgeries, I believe) in the last month. As you pray for Molly, will you mention William, Donna and Alen. They aren't church-goers, but said they would appreciate the prayers. William went into surgery about the same time as Molly.
11:40am <> I have found great comfort praying through Psalm 4.
11:20am <> You can experience being here with me. Click for larger image AND notes about what you see in the photo.
10:58am <> The family waiting area here is large, and many of the seats are full as we all wait for loved ones. I noticed that many of the people waiting are older. I feel quite alone in my youngness. I was sitting near a younger couple who must have had a child in surgery, but they were here and gone in an hour or less.
I'm very scattered mentally right now. I pray, then check the Tour de France online, then get up and walk, then read my Bible, then email or call someone, then pray again. It's an overstatement, but it seems this all happens about every 10 minutes and then starts again. I just can't sit still. Understandable, I guess.
I'm continually trying to stop myself from thinking of exactly where they are in the surgery. I've seen a video of the surgery so I can picture it. But when my wife is there it's too much for me to imagine.
9:35am <> Help from friends...
First, a friend just sent me this John Piper poem...
Not grace to bar what is not bliss,
Nor flight from all distress, but this:
The grace that orders our trouble and pain,
And then, in the darkness, is there to sustain.
Second, I just heard Alistair Begg quote Charles Spurgeon...
The keys of men’s hearts hang up in the narrow chamber of
suffering. And he who has not been there
can scarcely know the art of opening the recesses of the soul.
9:18am <> Pre-surgery photos. Click for larger images.
8:40am <> It's been a long morning. I'm tired, but too nervous to rest. It's nice to be able to blog here since it helps me stay busy. I can't do anything without pausing to pray, and as soon as I finish I'm ready to pray again. I'm so thankful for everyone praying out there.
Joe emailed early to say he is praying. Many others have emailed in the last few weeks, and we are thankful for all of you. Tom Ascol, Justin Taylor and others are asking for prayer for Molly. Gregory Pittman is asking if live-blogging brain surgery is a first, but he is also asking for prayer. Thanks guys.
What am I going to do now? Dunno. I will be pacing and praying a lot. Freaking out. Waiting. I have a pager on my hip in case they need to get a hold of me. You never know when something urgent might come up.
THURSDAY, JULY 12th
6:30pm <> Some errands today and a lot of preparation. Just finished dinner at our favorite local restaurant: Pirros. Good stuff, but we haven't had much of an appetite today.
Thanks for your prayers. The second half of our day today has been an emotional mess. The weight of what's happening in the morning is fully upon us. I have this gut-wrenching nervous thing happening every few minutes, but I know that's a pretty normal thing. Molly's symptoms have been less friendly the last two days, but she's getting by.
We really, really miss our kids. Dropped them off yesterday with family a couple of hours south of here. They are in good hands, but any hands other than our own aren't good enough. Got home last night and had to take Molly to get blood work done. Then we went to see the new Harry Potter movie. That was fun, though it was really hard for Molly to sit through the whole thing. She's a trooper for witches. :) Harry Potter, and now Friday the 13th surgery. If only it were also Halloween!
