Hi Everyone!
It has been about 3.5 weeks since my surgery now...and life recovering from a craniotomy and tending to a newborn are busy...and that is an understatement! I haven't posted much as the baby keeps me busy and any extended time on the computer really fatigues my brain and causes excess eye strain. I am lucky to have such great help with the baby so that I can rest a little more than most mom's with a new baby!
I just wanted to let you all know that slowly but surely I am making progress! As I reflect on the symptoms that have resolved, I am reminded at how far I have come! I am blessed for the outcome thus far and continue to pray that all will resolve/ improve.
Also, local ABC news media did a piece on our story (I posted this already on facebook a week or so ago) and I think that there may be some other media coverage coming....I will post if this is the case....http://www.wisn.com/video/23956845/index.html
I am just so thrilled to be alive with a healthy baby..I wanted to list out some of the things that have improved from prior to surgery and I am thankful for...and that I will never take for granted again....
I can now walk without help...in the last weeks before surgery I had to hold on to my husband or mom
I can look up at a menu at a place like starbucks with my eyes (and not move my head)
I can wash my hair without getting water/soap in my left eye because it didn't close tightly
The left half of my face doesn't feel like its asleep with a 10lb weight
I can feel my tongue
I can drink out of a glass without dribbling fluid out of my mouth
I can put eye makeup on again because I can focus my eyes to do so (and can now feel my eyelid)
My left arm has better coordination when I type! I was starting to hit the caps lock key all of the time...ugh!
My smile is symmetrical again
My left eye is the same size as my right eye 95% of the time...it was bulging prior to surgery.
I have full facial function post surgery!!!
Did I mention my adorable baby that is happy and healthy despite his early arrival (and spending the first month of his life living in a hotel/hospital)?! He really is my miracle baby! I am biased of course, but I think is the most adorable little guy. Holding him sets my heart at ease. He is growing so fast! I love every minute of being a mom!
My husband has never left my side. He has been so supportive and selfless. He is the most amazing dad. I am thankful every second of the day that he asked me to marry him. He helps me find strength I never knew I had.
My mom has been taking care of Parker and I for over a month and a half. She has done more for us than you can imagine...feedings, diapers, laundry a shoulder to cry on and motivation to move forward...and on and on...
I am thankful for all of you: my friends, family and neighbors. WOW is all I can say about the things you have done for us! They say God only gives us what we can handle. I think that he gave me each and every one of you to help me through, because this was more than I could handle alone!
I am still waiting for my eyes to track fully together, but I can tell that they are slowly improving with each week! I have to practice looking side to side. I continue to try to adjust to hearing only out of my right ear. Noisy places and large crowds are intimidating and I can only take them in small doses right now. I still have a decent amount of that 'wonky' head feeling, but I know I need to be patient as it has only been 3.5 weeks! Same for the fatigue as I tire quickly. All of these things will just take time and patience.
It is great to be on the other side...the weight of the world has been lifted from my shoulders, and I am so thankful and blessed to be typing this message. I have hope and I believe that all will continue to get better. I am not ready to drive yet. I have another week of restrictions on lifting, sneezing etc and then I get to start vestibular (balance) and physical therapy. I can't wait to be working out again! My incisions are all healing nicely, but I think the longest healing process will be the emotional one.
Thanks again all of you for your support. Every comment posted helped me get through this. I can't tell you how much hearing from everyone helped. It made me feel like I was never alone on this journey. I will be forever grateful.
I will post more when I can, but my brain is now maxed and I need to sleep! Fingers crossed baby Parker will start sleeping through the night in a few weeks!!!!
Wednesday, June 30, 2010
Friday, June 11, 2010
Parole: Approved
Well, Kris' parole came due today and she was approved for release. We busted her out of St. Vincent's Hospital and now we are required to live in a halfway house for a week. This is the same dormitory we've been living in for about 2 weeks now, Kris is just moving back into our room with us now. She will have some follow up appointments next week and they just want to make sure now complications arise and she continues to progress before we fly home. Parker has a checkup too. We can't wait to be back in Wisconsin (not many people say that when coming from CA) and see all of our friends, family and pets.
Wednesday, June 9, 2010
More Video
Kris reuniting with Parker again and actually getting to hold him. I told you it would be emotional - I couldn't be any happier right now.
Ok check that, I could be a little happier if I had my dogs and was back at home, but you catch my drift.
Ok check that, I could be a little happier if I had my dogs and was back at home, but you catch my drift.
Day 4 Update
Steady improvement yesterday as well. Kris' eyes continue to come around and she's able to focus a bit better. It's not all the way there, but its coming. She also has improved on her mobility. We're walking several times a day, and each time is faster and with more stability. I'm really proud with her perseverance and her determination to get back to something that resembles normal. I'm also wowed by her perspective on things as well. She could be really angry with life and the world for what she's been through, but instead she chooses to see the good in everything. She more talks about how much she appreciates and the loved ones in her life and is thankful for the outpouring of support from them, which includes all of you reading this.
Cue the tears now...on one of her walks yesterday she walked into the waiting room where Kaye was sitting with Parker. She got to see and touch her baby boy for the first time. It was an emotional meeting, but it brought that smile to my face that I talked about earlier. I'm just so happy that after all this, her hungry, poopy, cuddly reward (that's Parker, in case you missed that) is hers to enjoy very soon.
Cue the tears now...on one of her walks yesterday she walked into the waiting room where Kaye was sitting with Parker. She got to see and touch her baby boy for the first time. It was an emotional meeting, but it brought that smile to my face that I talked about earlier. I'm just so happy that after all this, her hungry, poopy, cuddly reward (that's Parker, in case you missed that) is hers to enjoy very soon.
Kris improves her street cred
I am really suprised and pleased at the scar. They shaved very little hair and the incision is a lot neater smaller than I was expecting.
Sorry if you're squeemish.
Sorry if you're squeemish.
Monday, June 7, 2010
Days 2 & 3
Post Op Day 2: Yada, yada, yada. Fastforward.....just a blah day. Sorry I didn't post, but it was just too busy and it was a bit of a downer day.
Post Op Day 3: I was a little freaked when her Dr. said that he hadn't really seen how her eyes were reacting before, but he reassured me that everything was perfect after surgery and the MRI was good so he was not too concerned. She just needs time. Sure enough, mid-morning rolled around and there was vast improvement. PT got her up to walk around and she was a little shaky the first time. She did much better in the afternoon and walked quite a bit with less assistance. Third time we did a full lap around the floor.
Her eyes are opening more, and while still not fully coordinated, there's big improvement there too. We sat and had a real conversation for a bit, which was so uplifting for both of us. Good to see smiles and laughs.
I expect we'll see continued improvement from here. It's a bit too emotional right now to reunite with Parker (actually probably the subsequent departures that would kill her), and she's not supposed to endure emotional stress right now (Doesn't this whole thing count as that?) because I guess it puts pressure on the brain. I can't wait until she's ready for that meeting though. That'll put the world's biggest smile on my face.
Post Op Day 3: I was a little freaked when her Dr. said that he hadn't really seen how her eyes were reacting before, but he reassured me that everything was perfect after surgery and the MRI was good so he was not too concerned. She just needs time. Sure enough, mid-morning rolled around and there was vast improvement. PT got her up to walk around and she was a little shaky the first time. She did much better in the afternoon and walked quite a bit with less assistance. Third time we did a full lap around the floor.
Her eyes are opening more, and while still not fully coordinated, there's big improvement there too. We sat and had a real conversation for a bit, which was so uplifting for both of us. Good to see smiles and laughs.
I expect we'll see continued improvement from here. It's a bit too emotional right now to reunite with Parker (actually probably the subsequent departures that would kill her), and she's not supposed to endure emotional stress right now (Doesn't this whole thing count as that?) because I guess it puts pressure on the brain. I can't wait until she's ready for that meeting though. That'll put the world's biggest smile on my face.
Sunday, June 6, 2010
Recovery: Day 1
I got in to see Kris several times today. She is sleeping most of the time and very groggy from the pain medication when she is not. She's bothered by head pain (does this surprise anyone?) the most and she's soar from being strapped down in an awkward position for 10 hours during the surgery. The ICU staff says its not uncommon for her to have this soreness and pain, and things should get better as the hours march on. Long surgery + lots of brain displacement = difficult recovery.
She is really bothered by opening her eyes, so she doesn't do it too much right now. She says it makes her head hurt so she has to be pushed by us and the staff to try every so often to get used to it. The doctors have done full exams on her and gotten good response out of her eyes when they do, so they don't think there is any lasting issues there it might just take a little time to adjust. She also had an MRI today to check for fluid buildup and such and it came back clean which was good.
I did notice that as the day progress our conversations went from one word answers to more reciprocal interactions. I believe that with another night of rest the progress will continue.
As Dr. Marvin once said....Baby steps.
She is really bothered by opening her eyes, so she doesn't do it too much right now. She says it makes her head hurt so she has to be pushed by us and the staff to try every so often to get used to it. The doctors have done full exams on her and gotten good response out of her eyes when they do, so they don't think there is any lasting issues there it might just take a little time to adjust. She also had an MRI today to check for fluid buildup and such and it came back clean which was good.
I did notice that as the day progress our conversations went from one word answers to more reciprocal interactions. I believe that with another night of rest the progress will continue.
As Dr. Marvin once said....Baby steps.
Saturday, June 5, 2010
Post-Op Summary
Well I finally got to a computer to type up a real report. The public network blocked the social networking sites, so I had to update via my phone which is a pain.
In any event, things went very well yesterday. Kris went under anesthesia around 11am local time and she was out around 9pm. A little longer under the knife than we were quoted, but it's not uncommon for a tumor of her size to take that long. She was stable the whole time, didn't lose much blood, and the doctors were able to do what they needed to do. They got 99% of the tumor out, with the last little microscopic bit stuck to her facial nerve. They don't push the issue too much, because the facial nerve is a very important thing to keep in tact, as it controls the whole side of your face including the eyelid (think about not being able to blink or close your eye - Ben Stein doesn't have enough drops to cure those dry eyes). Thankfully, the facial nerve remained in tact and was responsive to stimulation throughout the surgery. She's now in ICU being monitored for 24 - 36 hours to make sure there are no compications. None expected, but they can happen from time to time.
Now she just needs a little time to recuperate from a long surgery, and it can take a few days for her body to react to not having a big mass in her head. The doctor said that the tumor was "plunging into her brain", which was really upsetting her cerebellum and causing the symptoms she was experiencing. She may experience some issues things with her face, balance, coordination, eye function, etc. but its likely those things are temporary. Outside chance of permanent effects from the tumor, but its too early to tell on that. The important thing is that she is healthy, has no tumor and will be ready to start recovering very soon.
For those of you who were previously unaware, Kris is now deaf in her left ear as a result of the surgical approach. She had a hearing test just before surgery and it was almost gone anyway already, so its not a surprise and was on the bottom of the totem pole of things to preserve. The doctors were going to try to get a bone anchored hearing aid implanted during the procedure, but with the length of the surgery they did not feel it a good idea to tack on additional time under anesthesia. No big loss, it was a mere convenience to do these at the same time. We'll get it done locally sometime down the road through an outpatient procedure.
I'm off to see her in ICU now, so till next time....
In any event, things went very well yesterday. Kris went under anesthesia around 11am local time and she was out around 9pm. A little longer under the knife than we were quoted, but it's not uncommon for a tumor of her size to take that long. She was stable the whole time, didn't lose much blood, and the doctors were able to do what they needed to do. They got 99% of the tumor out, with the last little microscopic bit stuck to her facial nerve. They don't push the issue too much, because the facial nerve is a very important thing to keep in tact, as it controls the whole side of your face including the eyelid (think about not being able to blink or close your eye - Ben Stein doesn't have enough drops to cure those dry eyes). Thankfully, the facial nerve remained in tact and was responsive to stimulation throughout the surgery. She's now in ICU being monitored for 24 - 36 hours to make sure there are no compications. None expected, but they can happen from time to time.
Now she just needs a little time to recuperate from a long surgery, and it can take a few days for her body to react to not having a big mass in her head. The doctor said that the tumor was "plunging into her brain", which was really upsetting her cerebellum and causing the symptoms she was experiencing. She may experience some issues things with her face, balance, coordination, eye function, etc. but its likely those things are temporary. Outside chance of permanent effects from the tumor, but its too early to tell on that. The important thing is that she is healthy, has no tumor and will be ready to start recovering very soon.
For those of you who were previously unaware, Kris is now deaf in her left ear as a result of the surgical approach. She had a hearing test just before surgery and it was almost gone anyway already, so its not a surprise and was on the bottom of the totem pole of things to preserve. The doctors were going to try to get a bone anchored hearing aid implanted during the procedure, but with the length of the surgery they did not feel it a good idea to tack on additional time under anesthesia. No big loss, it was a mere convenience to do these at the same time. We'll get it done locally sometime down the road through an outpatient procedure.
I'm off to see her in ICU now, so till next time....
Friday, June 4, 2010
good stuff
they got the tumor out and are closing up. went very well im told. will post more details later when i get to a computer
the beat goes on
doc just checked in. still going, probably a few hours to go still yet. that would make 10 hrs under. they say shes still doing well though. got tom petty on the brain...."the waiting is the hardest part"
ongoing
got an updat.e about an hour or so ago. surgery is going well, not much blood loss so far. they have everything opened up and are working on taking out the tumor next. it takes awhile just to get setup and then crack open her noggin. hopefully it comes out easy from here. will post as i know more
Underway
surgery started .a little under 2 hrs ago. kris was in remarkably good spirits this am, and is looking forward to feeling bettter. she wanted me to put a reward out for anyone that tracks down an authentic Brett Michaels bandana for her to wear. she was really funny this am , it was nice to see a glimpse of her in an unburdened state like old times...yea meds!
till later
till later
Thursday, June 3, 2010
Big Day Tomorrow
Well, I'm back blogging so that means that the big day draws near. Very near in fact, things begin around 10am pst tomorrow (Friday, 6/4) and will last in the neighborhood of 7-8 hours (+/- a few). Emotions are free flowing at this point. Everything from anxiety and fear to relief and anticipation are running rampant. We are confident that we chose the right doctors to do this and do it very well, so we know things will be okay but it still brain surgery which is scary any way you look at it. The wait has been painstaking though (we've known since the beginning of March) and we're ready to be on the recovery side now.
Since the last time I wrote we've moved over to the dormitory attached to St. Vincent's Hospital. It's not much in the way of fancy, but it gets the job done for a very reasonable price. The proximity to Dr. Appt's and the hospital is second to none, and we've been fortunate to have met a lot of nice and amazing people while we've been here. Also, big bonus my Mom came to town on Tuesday so we've got reinforcements to help out while Kris is laid up.
Parker is doing very well. He had his 2 week check up and he's weighing in up over his birth weight now, which is excellent, and no issues what so ever with anything health related either. He eats, sleeps and poops like a champ so we're extremely happy and fortunate parents.
I'll be updating as much as possible tomorrow during and after the surgery, as I know there are many people that have expressed interest in hearing how things are going. Till then....
Since the last time I wrote we've moved over to the dormitory attached to St. Vincent's Hospital. It's not much in the way of fancy, but it gets the job done for a very reasonable price. The proximity to Dr. Appt's and the hospital is second to none, and we've been fortunate to have met a lot of nice and amazing people while we've been here. Also, big bonus my Mom came to town on Tuesday so we've got reinforcements to help out while Kris is laid up.
Parker is doing very well. He had his 2 week check up and he's weighing in up over his birth weight now, which is excellent, and no issues what so ever with anything health related either. He eats, sleeps and poops like a champ so we're extremely happy and fortunate parents.
I'll be updating as much as possible tomorrow during and after the surgery, as I know there are many people that have expressed interest in hearing how things are going. Till then....
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