Living with Chiari – Surgery Liveblog

1/15 10:00am: We slept until 9:45am! It was so nice. The night was kind of long, but not too bad. When we first put Jessica in bed, she got way too cold before she could heat up under the blankets, and she started shivering pretty bad. All the shivering made her REALLY sick, so I crawled into bed with her (it was only 9:00pm, so I wasn’t ready to go to bed yet). We snuggled really close trying to heat her up. I felt really bad for her, but she was ok after a while. Also, we found that making her eat a couple pretzels every time she took pills during the night (2 or 3 times) helped curb the nausea some. Anyway, she ate a bowl of mini wheats this morning with a small glass of chocolate milk and is taking a shower by herself before she starts feeling tired/sick/in pain. It really is always one of those three things, but it IS getting better. I feel really blessed to have modern medicine that they can just cut their way in and make room for her brain/fluids to move around and sew it up all in a couple hours and the only immediate side effects are nausea and headaches. Granted, they are very much helped by drugs, which itself is also a miracle.

1/14 7:30pm: I’ve been home since 1:45ish. The first thing I did when getting here was go to sleep. I’d been awake for quite a while before getting to go home, and needed a nap very badly. I got to see my sweet little boy around 4:15. I don’t know how I’m going to keep up with him! He’s got some much energy, but he does make me smile. I’ve seen my family and they brought me some dinner from Louies. It was a HUGE sandwich (really more like 2), and I only ate a quarter of it. So, you could say I ate half a sandwich. 🙂 It’s been a pretty radical diet (and not one that I’d EVER recommend), but I can already see a difference in how my pants fit. 😉

1/14 11:40am: just finished lunch. Didn’t eat quite as much as breakfast, but she was snacking and drinking lots of fluids between meals. We are leaving in 20 minutes! We are now packing up and waiting for her next round of meds at noon. Yay!

1/14 8:40am: Good Morning! It is a good one for us. Jessica got off her IV again last night around 1:30am, and she woke up feeling really well. She ate a TON (well, relatively) of breakfast and only stopped once she felt full, NOT SICK. She has yet to feel sick from it, so the doctors are sending her home today! In her words: “They are springing me from this joint today!” So, let’s just hope to have no more new news!

1/13 6:10pm: check out the video below for your latest live blog courtesy of Jessica!

1/13 6:05pm:

1/13 2:15pm: Well, they didn’t like the increased nausea and dizziness after taking her off the IV, so they’ve put it back on her. They did decide to try giving her solids for lunch. It wasn’t any better or worse than liquids. She could only stomach about a half a roll. Her dizziness is a little better than this morning. Its all kind of frustrating for her because we are not seeing much improvement. At least the headaches and soreness are at acceptable levels. We don’t mind waiting for time to take it’s course with the nausea, but it’s difficult when you don’t know how much time is required.

1/13 10:15am: Sorry about the lateness of this. I had to take Spencer to his first Mother’s Day Out and just barely got here. Lots to update. Jessica had a really good night last night. Except for being woken up every so often to give her medicine, she slept really well. When. She woke up this morning she was feeling her best yet. She ate some broth, juice, and some of the Ensure. She said it was more than she’s ever eaten yet. The doctor came and said he was really pleased with her recovery so far. It was his estimation that she could probably go home tomorrow or Saturday. The only thing she had to accomplish was keeping down solid foods and being able to walk around a bit more. Based on what I see now, I’m thinking Saturday more than Friday. Her incision is still looking really good. They took off her IV this morning. That scares me a little bit because drinking very much at all can make her sick, but I guess they won’t let her get dehydrated.

Anyway, while she felt good, she got up and brushed her hair and put on some chap stick. Previously, she’d only been able to be up long enough to go to the bathroom. She unfortunately started feeling sick again. Let’s just hope it doesn’t last too long. It is funny because we thought the headaches were going to be the biggest hurdle for her while here, but it has really been the nausea.

1/12 9:00pm: Jessica got a good nap from about 5:30 to 7:30. She woke up acting almost like normal. It was really encouraging. She wanted her dinner and ate about half the broth. She basically had very low pain in her head and no nausea. It wasn’t to last forever though. About a half hour after dinner, the nausea set back in. It is pretty bad right now (just asked for the barf bag), but the meds for it are due in about 20 minutes. Hopefully that will help. So, a little more food, a little more delayed nausea. We’ll call it a victory.

1/12 5:35pm: I guess I should update this. She is sleeping a lot less. We watched two whole episodes of Friends and some Everybody Loves Raymond. Her parents came and visited for a while. Nice to see the “real” Jessica come out for a while. She was sitting up and not looking that drowsy for a couple hours. Her lunch came late, and all she was able to get down was a half cup of juice and a half cup of jello and a half a Popsicle before she felt nauseous again. She looked like she was about to lose it, but she managed to keep it down. I guess it’s good to win the small battles and all that. I’m guessing the doctors’ criteria for her leaving the hospital would be to a) not be exhibiting any complications from the surgery (especially spinal fluid leakage) and b) be able to eat and keep down caloric intake. I’m guessing that second thing will probably take another couple days. Here’s hoping we can figure it out quickly. I’m sure it will end up being a really small thing in the long run, but you know how it is dealing with is stuff in the present. 🙂

1/12 2:08pm: here is a shot of her “zipper”:

1/12 1:45pm: still sleeping a lot. She does pretty good with getting up to go to the bathroom by herself and doesn’t seem to slow about it either. Still a lot of pain and dizziness and nausea, but that is very expected. As the doctor told her, you’ve reconfigured the way your nervous system is flowing out of your brain. It needs to relearn a lot of things. Until it does, you’re going to be unbalanced and nauseous. She isn’t really drinking anything yet, but no doubt they will be making her do that soon. Maybe later we will walk up and down the hall some.

1/12 10:25am: Jessica is out of the ICU. She just got set up in her new regular room (by ourselves, not sharing). She is in pretty good spirits, but after being awake for about 3 hours, I think she is going to sleep for a while. The nurses had get retake the meds she vomited, and they stayed down this time. Also, she is off the morphine and on percocet, which is a good sign.

1/12 9:37am: Ok! Sorry about being such a slacker last night. Don’t worry, nothing really changed after my post. That is, until this morning. I couldn’t stay the night, and before I got here, he had seen her surgeon and some other doctors. They removed the bandage from her incision. I haven’t seen it yet, but they said it looks really good. When I came in this morning, she was sitting up a more alert than she had ever been yesterday. They had er get down some fluids including broth, juice, jello, etc. Unfortunately, she piled it all out about 10 minutes later. They are going to try some different nausea medicine because they should be able to control this better.

So, she was awake from about 7:30 to 9:30, so that’s a really good sign! She even got out of the bed for the first time to go to the bathroom (oh yeah, no more catheter either). They have our next room assigned (call if you want the number), and they will love us soon. Less than 24 hours in the ICU! Yay! All her monitoring wires have been removed, so that’s good. She is just down to two IVs.

Anyway, I guess you can probably tell that I am kind of excited. :). I just didn’t like seeing her devoid of her normal personality yesterday, and it was nice seeing some of that shine through this morning, especially her smile!

7:25pm: She is about the same as ever. I had to leave from 6:30 to 8:00, so last I saw the nausea medicine was working. Headaches worse than any she’s ever had, but they seem bearable. She’s still sleeping 95% of the time. Also, the doctor said that the nausea is common with this surgery for up to 3 days afterward as part of what they are cutting is part of what controls nausea or something like that. I will post one more update when I leave at 10pm.

3:45pm: Code red finished about 10 minutes after it started. No idea what it was. Anyway, Jessica woke up to roll over and vomited (or tried to; nothing in her stomach) for about 5 minutes. She is back to sleep now though.

3:25pm: Attention! Code Red! That’s the message that is blaring over the ICUs speakers. It sounds like it is for our whole floor. It is accompanied by loud whooping sirens. The first time it came on, Jessica fluttered her eyes some, but now she is just snoring away! A nurse came by and made us clise and lock our door weird! Jessica did wake up for a bit a little while ago, an she seemed a lot more coherent than before, but she quickly fell asleep. Anyway, I’ll update if I find out anything more about our code red.

2:20pm: She finally got an ICU bed! I just came back, and after saying hello to her dad, she promptly passed out and seems to be resting peacefully. Hearing her snore has never been so comforting! I can’t see her stitches yet because they are still so bandaged up. Before passing out, she told us she vomited 2 or 3 times after waking up from surgery, but not since then. The nausea is still there and the headache excruciating, but other than that, good! Ok, I put that last part in there, but she seems about as good as can be expected. I really hope she just sleeps and sleeps.

1:36pm: the nurse finally called us and said she got permission to move Jessica to any unit in the ICU, so she’s hoping one opens up in the next 30-40 minutes. She said she (the nurse) hasn’t been more than 6 inches away from Jessica’s bed this whole time, so that’s reassuring. She also said that Jessica is still kind of sleeping on and off, and they would like to keep it that way since it is the best way to combat the nausea.

1:20pm: Still waiting.

11:35am: Ok, after all that cursing, I’m going to bless someone. Bless Justin Clayton! His family are friends of ours, and it just so happens that he is a surgical resident and is on call around our building today. He is stopping by to check on Jessica every so often, and he said that the vomiting was just initially and a typical reaction to the anesthesia. He said that she is sleeping now and is doing pretty well. We are so lucky that even though we can’t go in to see her, we have a friend who can. Thanks Justin! Oh, and still waiting on that ICU bed.

10:57am: Curse you bad-news-giving lady! The nurse just called again. Jessica is still in the recovery room and STILL can’t leave and we STILL can’t see her. And she is apparently now vomiting. I don’t know how much because AT&T dropped my call and now she’s not calling back. Curse you AT&T! Curses all around!

9:45am: A nurse called me from the recovery room. We aren’t allowed to go see her yet because they have other patients in there and privacy and blah blah blah. She said that no rooms are available in ICU yet, so until they are, we can’t go see her. :(. Grrr. She did say that she is ok. She has been kind of nauseous (normal) and in pain (also normal), but she is giving her drugs to help. Let me see my wife!!!!!!

9:00am: The surgeon (Dr. Mapstone) just came and talked to us. He said the operation went well. He said she was really tight when he opened it up (the brain was really cramped), so it was really good we got this done now. He said she’ll get into recovery soon and we’ll get to see her. He said everything went really well and she should have no complications, but that’s why she is staying here for several days, so they can monitor her.

7:45am: I got the first call from the nurse. They finished anesthesia ok and the surgeon has made the incision. Crossing fingers!

7:10am: Ok, we’ve parted ways. She’s probably gone under anesthesia (spelled it right the first time!) at this point. We probably met about ten doctors before she left. Dr. Mapstone (our surgeon) came in to say hi. Last month we asked Heavenly Father to give us guidance in picking the right surgeon, and when we met Dr. Mapstone, we felt at peace with him being the right one. Well, after he stopped in this morning I felt that same peace very strongly. I hope Jessica did too.

6:20am: We got here around 4:50, but they didn’t open until 5. Longest 10 minutes ever. We actually got called back to the pre-op room around 6:00. She’s all IVed up and ready to go now. No turning back now! (not that we would want to). Now we wait for all the different people to show up here before surgery. Luckily, they will all come to us.

I (Adam) will be updating this post with all the pertinent information about Jessica’s surgery over the next few days, so keep checking back. Here we go!