Day 5 Mid Day: Even Better

in

Let's go for a walkThe pain lessens and worsens every few hours around the time her meds wear off and it's time for more. She woke up early this morning at 6:30 and has been up since, with a brief nap around lunchtime. She's moving around even more now and has a little more flexibility in her arms. It is very hard for her to raise her arms above shoulder length because of the nature of how that pulls & stretches the back of her neck (the wound). She's going to attempt to take a shower for the first time since Sunday this afternoon, after we walk down to our apartment lobby to pick up a package. I offered to do it but she insists on coming too (I think she's beginning to want to get out of the apartment some). She is disappointed that they're calling for this possible snow/cold weather this weekend because it means she wont be able to get outside any. Her stomach was upset last night, all night long, but cleared up this morning around mid-morning. She's starting to use her new MacBook Pro now and even managed to type out a post of her own yesterday afternoon. When the pain doesn't have her in bed clutching a pillow, she's getting back to her regular self. Her sense of humor is back. Her appetite is back. She's watching TV and using her iDevices regularly now. Oh, and we scheduled her follow-up appointment with the wonderful Dr. Weingart. She gets her staples out next Thursday. Oh, and she kicked me out of the apartment this morning long enough to scavenge the barren wasteland that is the shelves of northern Virginia stores that sell iPad 2's for long enough for me to acquire one of my own.

Day 4 Mid Day: Up and About

in

On the couchLast night was spent up and down every 2-4 hours with bathroom trips and medicine doses. It seems each time the pain meds wore off and it was time for another dose, the pain would wake Steff up. After this mornings' dose at 8:35, she managed to sleep until around 11:45 - her longest sleep bout yet. After getting up, she ventured out on the couch and surprised me by only wanting one pillow (up until now is has been 4 or 5 surrounding her back and neck). After eating a banana she was joking about the cats and watching the Travel Channel commenting about puppies she saw in Germany. She posed for this picture.

Day 3

in

Steffanie's mother stayed with her all night last night in her hospital room due to us being uneasy about leaving her alone considering how much of a difference in care we observed from the NCCU to the Inpatient Recovery. I had to be at our apartment Wednesday morning to let cleaning folks in (we sprung for having someone else do it in prep for her coming home. One less thing to deal with this week). My Mom and Dad had came back to Alexandria as well, vacating their lovely, but pricey hotel in Baltimore. When I awoke Wednesday morning I had a text from Steffanie saying that early in the morning she was able to walk to the bathroom, by herself and return. On top of that, the doctor had been by to see her, and based on her improvement he was having a physical therapist see her at 10:00 am. If she could pass her exam, she would be discharged and sent home. After getting things squared away at our place, my Mom and I left for Johns Hopkins, leaving my poor father back home (who had spent most of the past two days sitting in horribly uncomfortable waiting room chairs). At around 11:45 we got to the hospital. We would have been there sooner had I not had to deal with the cleaners over the phone. Despite my having given them our current address, they had us listed under our old address and sent the people to the wrong building. This took 20 minutes to straighten out over the phone while standing in a parking garage. After this was over, I managed to get up to Steff's room, with her bag. The nurse was in the process of getting his discharge paperwork in order. Steff changed out of her hospital gown and into her "going home" clothes that we had prepared this past weekend - certain types of clothes that are easy to get into. No pull over tops or button/zip up pants: pajamas - zip up sweater, that sort of thing. After a short bit of waiting the nurse came back with her papers including her prescriptions and all of the paperwork and instructions relating to her medication, diet, and allowed behaviors. Her two remaining IVs (long since detached from any tubes) were taken out and a gentleman came up with a wheel chair. From there the group moved off to the main entrance while I headed off to fetch the car from the visitors parking garage. After several minutes of navigating the campus of Johns Hopkins I was able to pull up and collect Steff, her things and our Mom's into the car. Then began the car ride from hell. You see, they had given her the last doses of pain medication from the hospital that morning when the doctor officially gave the orders to discharge her. By this time it was 1:30 pm - about 4 hours since that happened. Her pain medication had completely wore off. She was now about 50 hours out from brain surgery with nothing to stop the pain inside her. Are you aware just how horrible the roads of downtown Baltimore are? Or I-95 South to the beltway? Or the inner-loop down south down to Alexandria? Well, they are. Every bump, pothole, bridge/pavement transition, car breaking fast in front of us, etc, would cause her extreme pain/discomfort. In addition, any loud noises would hurt her too (the gentleman at the hospital who kept insistently blowing his ear splitting whistle to hail folks cabs was especially helpful). We had to talk in soft voices/whispers until we got her to our apartment in Alexandria. After parking, we began the long long long walk down the hallway to our apartment. I was worried if she could make it, but she did, heading straight for our bed. After getting settled in, we thanked my parents and shooed them off home, given that they had a 7 hour drive to wytheville to get their dog who was being watched by my aunt, and then another 2 1/2 hour drive back up 81 to their home. As I type this sentence at 9:30 pm, they're probably still driving I just spoke with them on the phone and they now have the dog and are about 1 and 1/2 hours away from getting back home. Once Steff was safely in bed, I headed off to Walgreens to fetch her prescriptions. Once I arrived there, I had forgotten to get her drivers license or her insurance card. Luckily, my ID and my insurance card was enough for the pharmacist. She also had her insurance on file due to another prescription she had filed there once before. The pharmacist was very helpful in making sense of hard-to-understand medication instructions on the paper Johns Hopkins gave us. After a short 20 minute wait, I was out of there and back home with the meds. Steff had managed to eat some food by this point, and move into the living room on the couch. This enabled her to be able to take the Oxycodone (you do NOT want to take it on an empty stomach) along with her other cocktail of pills. After a short bit, she was feeling much better. I then headed off to Whole Foods to buy all of the things she needed (plus all of the things I'm not normally allowed to buy at Whole Foods when accompanied by a wife who gives you reproachful looks whenever you pick up various boxes of sugary things that I probably don't need). While I was there I ate a bit of food from their hot food bar before realizing it was the first food I had eaten all day. At around 6:00 pm I got back home and unpacked the groceries. Steff was still doing much better, as the meds were keeping the pain at bay. The rest of the evening was uneventful. Mainly keeping her comfortable and handing her things because she cant reach for them herself. Helping her stand up, sit down, make it to the bathroom, shift positions on the couch, etc. As of right now she's had dinner, her 2nd dose of meds and is in bed watching a movie on Netflix over the Apple TV. Hopefully she'll be able to sleep soon. She hasn't taken her Benadryl yet so I'm going to go off to the bedroom now to make her do so. I'm being very strict with her meds schedule according to doctors orders.

Day 2

in

We arrived at the hospital today at around 11:30 am only to find they were only just moving Steffanie out of the NCCU to a room in In-Patient Recovery two floors up. From the time we got there until about 1:30, it was mostly spent getting her reconfigured in her room. It took quite a while for the nurses to find an air pump for her ankle inflaters. I don't have any idea what they are actually called - but basically they are inflatable plastic devices that go around her ankles and are hooked up via air-tubes to an air pump. This pump squeezes air into them to keep her blood flowing in her legs to prevent blood clots. I prefer the name ankle inflaters. It took practically all afternoon for the nurses to find her a pump, determine this one didn't work, and then find another pump. Despite the fact that she arrived in her room at 11:30 am, she didn't actually receive a working pump that was able to run and keep running until around 4:30 pm. Sigh. They brought her some food at around 1:30 or so and she was able to eat a few bites of some pretty bad sloppy joe (just the meat with a spoon), a few bites of broccoli, and 1/4 of a cookie. She also drank about 1/2 pint of milk which impressed me. This was the first bit of food that she had eaten since Sunday night. As the day wore on, she was gradually able to eat some fruit we had gotten her from the cafeteria, drink quite a bit of water (four or five 12oz cups) and some juice. She was also able to eat some yogurt and eventually with dinner, some pasta & other things. Later in the afternoon she was able to walk, with assistance, and very slowly, to the bathroom. Earlier in the afternoon she was able to sit on the side of the bed for just a few minutes and then stand with our help for just a minute or so. I took my parents with me back to our apartment at around 7:45 pm this evening. Since she is in her own room now and not in the NCCU, her Mom is staying overnight with her tonight as I have to be here at our apartment tomorrow morning (Wednesday) to let some folks in who need to get in. Once done, I'll head back up with my Mom. Dad is going to stay here tomorrow as he's been spending most of his time sitting in very cheap/uncomfortable chairs in waiting rooms for 2 days. He gets to cat-sit tomorrow. By tomorrow night, after a full day with Mr. D and Ms. S, he may need to take Steff's place. At around 4:00 or 5:00 pm today, Steff began asking for her phone and had the strength (and willpower/interest) to hold it up and begin doing things like checking her email or twitter - her first time in doing so Since early Monday morning, pre-surgery. Monday and earlier Tuesday I had been relaying messages to her or holding it up for her to read. She would check her phone for just a minute or so at a time because she was still experiencing quite a bit of pain most of today. By this evening she was beginning to use it more and more. Today's goal was to try to sit up or stand up gradually more and more, and to eat some food. This purpose of the food was so they could remove the pain-med drip & IV and switch her over to oral pain meds (Oxycontyn - I probably misspelled that but I don't feel like looking it up. If you care about silly things like that please consult Rush Limbaugh for proper spelling[hello Republican family members ☺ ]). Once I got home tonight, unpacking the car, helping my parents unpack their truck, and cooking some food, I got a text from Steffanie. She had managed to walk to the bathroom on her own (with her Mom & nurses very close by to make sure she kept her balance) but did so successfully. She called me and spoke on speakerphone. I could tell that her voice was louder (less weak) and that she felt better than when we had left her at 7:45. Her Mom thought that, with the state she was in by this time, that it's a good chance she'll get to come home tomorrow. We'll see I guess. I'm not getting my hopes up because it seems her state of pain/mood has ebbed and flowed somewhat from time to time. I'll feel better once I see her tomorrow morning if she sounds even better than she did tonight. Side note that I forgot to mention yesterday: If you have a Cat that likes to jump on the kitchen counter, then the top of the fridge, then to the top of the kitchen cabinets - make sure you do not use the top of your fridge to store all of the carry-out restaurant menus in your neighborhood. Piles of paper such as this may cause the cat to slide a small bit when jumping down from the cabinets which, in some circumstances, cause him to kick the freezer door open on your fridge....like Mr. D must have done sometime on Sunday or Monday, because when my Dad and I returned home last night the freezer door was wide open and all the food inside was room temperature. The good news? Our freezer is now clean! Great! I had been meaning to clean it out for a while. The bad news? I made the quickest Trader Joe's run in the recorded history of man-kind when I pulled up tonight at 8:55 pm to their store (hint: they close at 9:00). Bad Mr. Darcy. In short - Steff seems a lot better today, despite the problems we had at times today getting things she needed (there are other stories besides the air pump which I don't feel like going in to, but suffice it to say we miss Marlon, her nurse from yesterday, from the NCCU). The only problem is that she's still been in a lot of pain from time to time but I guess that's normal when they make a 4 inch cut into you head, remove part of your skull and back bone and then sew you back up. Still though, she's getting back to normal. We'll see how tomorrow progresses. Will post more updates tomorrow.

Day 1

in

Pre-Day 1

After meeting up with my parents who drove in from southern Virginia, her father who drove up from Florida (he had been visiting relatives there) and picking her mom up from BWI Airport, we drove into Baltimore and checked in at Hotel Monaco downtown, which is convenient due to its proximity to Johns Hopkins. After a nice dinner out with both sets of parents, we ventured back to the hotel to get as much sleep as possible, because we needed to be awake at 4:00 am Monday morning.

Day 1, Monday 21 March.

Had to be at Hopkins at 5:30 am. If you ever need to have surgery at Johns Hopkins, book your hotel the night before at Hotel Monaco. In addition to having an excellent & friendly staff, they offer a Johns Hopkins special rate that includes car service to and from the hospital. This is essential when both sets of your parents are from rural areas and aren't used to driving or parking in the "big city". This was a godsend. The car service had a nice big vehicle there at 5:00 am sharp which deposited us at the main entrance of Hopkins by 5:15. Once inside we checked in with the security desk and received out complimentary security arm bands which all non-employees of Hopkins must wear. Steffanie got a special yellow band that I jokingly told her let the security folks know to grab her if she tried to make a run for it out the door. We were able to find the right set of elevators quickly and found where to go to check into pre-op fairly quickly. They shuffled us into a special pre-op waiting room and told us they would call her when they were ready. They also assured us that once they prepped her, we could go back and see her in the prep room before she was carted off. We waited in the waiting from for about 30 minutes before they took her back to the prep room which involved in meeting with her doctor, hooking her up with a few IVs, prepping with her anesthesiologist, and then after about 1 hour and a half of waiting, we got to see her. She was noticeably nervous which quickly turned to tears. They let her keep her stuffed Corgi puppy (thanks Allison) to hold on to at least until they took her into the surgery room. We spoke with both anesthesiologists(Hopkins is a teaching hospital after all - there are two of everyone I quickly found - the teacher and the student). After hugs, kisses and a few goodbyes they kicked us out. While she was taken of to wherever it is they take her to do whatever it was they did (I wont go into details because I do not wish to pass out sitting here at my desk as I type this, as I did several weeks ago when her doctor explained the procedure to us. There is a reason I code websites and am not a doctor). They sent us to yet another waiting room where a nurse/liaison met us, collected our names and phone numbers and sent us to a waiting room on the ground floor that was roomier and more food-accessible. They advised us that this would be a good time to try to get some breakfast. After a quick search, we found the cafeteria and ate. Returning to the waiting room at around 8:30 or so it was only a short while until at 8:45 they called us to say surgery had begun. The nurse told us she would give us updates every 2 hours until it was over. I managed to keep myself occupied with Twitter, watching Andy Carvin's Libya/Yemmen updates or responding to folks who were giving Steff well wishes via email/Twitter/Facebook/text. At 10:40 they told us that she was still in surgery but that everyone was good. That's it. No other information. We waited longer - and then finally, at around 11:10 (give or take 15 minutes, I didn't bother to check my watch), she was out of surgery. Myself and 2 other people could go up to the waiting room on her floor to speak with the doctor. I went up with her Mom & Dad and after checking in with them and a short wait, Dr. Jon Weingart (Who is awesome btw. Did I tell you how awesome he is? Oh, no? Well he is awesome. Very awesome.) came to see us and told us that everyone went great. No problems. Completely routine. He answered a few of our cursory questions and then told us we could go into the NCCU (Neurosciences Critical Care Unit) to see her. A short walk later, we managed to find it without getting lost and made our way to the, yet another, even more special waiting room. A very nice lady who staffs this waiting room has the sole job of keeping track of which patient belongs to which family in the room and allowing them to find out any information they need to. We had to wait a bit longer for them to finish cleaning Steffanie up but around 11:45 me and her Mom got in to see her (only 2 people allowed into her room at a time). She was very red in the face, flush, probably from the medication. Very very groggy and out of it, but awake. Still recovered from the anesthetics I guess. She could open her eyes but just barely, and talk, but just barely. She complained about her head hurting and her arms hurting (they have something like 5 IVs in her giving her various pain meds & fluids). One by one we brought her Mom, Dad and my parents into see her. We began a "watch" of sorts over the next few hours, where we would take turns sitting with her while other pairs went off to get lunch. Her father had to leave to go back to Indiana so by 1:00 or 2:00 (again I lost track of time by this point) he said his goodbyes and headed back to Indiana for his 14 hour drive. At around 2:00 or so I headed off with my Dad and found some lunch downstairs but was back "on duty" by 3:00. I stayed with her until they kicked us out at 6:00 (visiting hours are from noon-6:00). At around 4:00 pm she started to be able to get to sleep. I think the pain meds were finally overruling the pain enough that she could get to sleep. She could only sleep for 10-20 minutes at a time though because the nurses have to check on her very often for her vitals and fluids. At one point Marlon (who is her primary attending nurse and completely awesome, btw) managed to get her pain dosage increased because the pain was simply too much. Bt the time we left her at 6:00 she was able to fall asleep much faster after each interruption and I am hoping is sleeping well right now as I write this. It's been a long day and I've very tired. I wanted to get this update out before I went to sleep. We're heading back to Baltimore tomorrow morning (I'm here in Alexandria with my Dad. Her Mom & my Mom are at the hotel in Baltimore) to get there by noon for visiting hours again. Oh and her MacBook Pro arrived today (to replace the one I spilled water on 2 weeks ago, on our anniversary, yeah..that one) and I've made good progress in getting it setup so it's ready for her as a coming home present. Thanks for all the well wishes, tweets, emails, Facebook messages and texts. We really appreciate it. I've been reading them to her all day when she was able to stay awake to listen. Please excuse any typos/horrible grammar. I didn't proof this. Hitting the post button now.