Sunday, April 26, 2009

Phoenix - Part 4 - Home

After getting the good news from the doctor on Monday that Katie's incision was healing nicely, we were all more than ready to pack our bags and head home. We all left Phoenix on Tuesday.

The people at the Phoenix airport were so helpful in getting Katie a wheelchair to take her to her gate and upgrading their seats so that Mom, Dad and Katie could all sit together. As Katie's luck would have it, they boarded the plane and were then told that there was an hour and 40 minute delay. Mom and Dad were able to get off the plane to get them something to eat and Katie stayed aboard to rest.

They had an uneventful flight and arrived at JFK at 8:30pm. Aunt Sue was there waiting and ready to take them home. Mom and Dad said that Katie did great on the flight and was able to lay her head on Mom's lap for most of the way.

Wednesday and Thursday were rough days for Katie. She said she felt lousy and slept most of the time. She had a headache and was nauseous. We think it was because of the traveling as she seems to be doing better.

Yesterday was her appointment with the neuro ophthalmologist. She is still having severe double vision and we were hoping the doctor could give us an idea of when it might go away. The doctor told her that although there was no damage to the optical nerve, it was very close to where they operated on her brain stem and it could take nine months to a year before her vision is back to normal. Obviously, this is not what we were hoping to hear. If it does not correct itself they will have to do another surgery to repair it.

Katie's spirit's are good. It's been amazing for me to watch my sister go through this. She is so brave and so determined to not let it get the best of her. I admire her strength and am so proud to call her my sister. I miss her and can't wait to see her again.

Phoenix - Part 3 - After Surgery

The following are excerpts from the emails we sent to family and close friends:

4/11/09 - Katie had a rough night. She was sick from the anesthesia and is still in a lot of pain. They are giving her a variety of anti-nausea and pain medications to try and get it under control and make her more comfortable. She will be in ICU for at least two more days and then they will move her to a regular room.

4/12/09 - AM Update - Happy Easter! Katie is doing much better today! Yesterday was rough but they managed to get her pain under control. She was pretty out of it for most of the day. They are going to keep her in ICU for another day or two and then may release her rather than transfer her to a regular room. She looks great today. They got her out of bed and this caused some dizziness. We just ordered her a bagel and she is hoping that will help to alleviate that. She is more alert and does not seem to be in as much pain.

PM Update - The doctors and nurses say that Katie is doing very well. The physical therapist came in today to get her up and out of bed. They did all kinds of tests on her and she passed with flying colors. Unfortunately, she is in a lot of pain and said that today was the worst pain that she has had so far. Getting out of bed and sitting for even two minutes was excruciatingly painful for her. She is very dizzy and her vision in blurred. Seeing her in so much pain is almost as hard as it was to see them take her away for surgery.

4/13/09 - AM Update - Katie had a decent night. She was able to get some sleep and her pain seems to be more bearable today. The occupational therapist came in this morning and did all kinds of tests on her. He got her out of bed and she lasted much longer than she did yesterday. Her vision is still blurred and the pain increases the longer she is in the upright position. We will try again with her later as he said that she should try and get up every 1-2 hours. I can see in her face that this is torture for her.They will be removing the lumbar drain hopefully later today and this will allow her to be more mobile. At that point they are going to make her walk and I know she is not looking forward to that.We haven't seen the doctor yet today so we don't know the results of the latest MRI but as I said earlier, everyone says she is doing great. We can see a big improvement since we left her last night. Shortly after we got here this morning she asked "Who have you talked to?", "are there any emails?" and "have you let everyone know that I am doing ok?" I read her all the emails that we received and she even laughed out loud at several of them.

PM Update - Katie is improving every day. We got her out of bed several times today and although the pain gets to be unbearable, she is always willing to give it a try. They removed the lumbar drain and now all she has left is the IV line. Even though it is now 10pm Phoenix time, they are still talking about moving her from ICU to a regular room tonight and possibly releasing her tomorrow. We think it's too soon. She still has tremendous pain after sitting upright for more than 4-6 minutes and her vision is so blurry that it makes her nauseous.

4/14/09 - AM Update - It is a new day and we have so much to be thankful for. Katie had a good nights sleep and is feeling better today. She is still experiencing quite a bit of pain when she sits up but the dizziness and blurred vision seems to be slowly improving. The occupational therapist was just here and he got her out of bed for a stroll around the ICU unit. She did very well but is now fast asleep as it seems to have worn her out. The good thing is that whenever she gets woken up for these activities she is ready and willing to do them. When he came in and told her what he wanted to do, she said "Let's do it!". She seems to be more tolerant of the walking than just sitting still.We are hoping that they will keep her here for at least one more night. The thought of bringing her back to our condo at this point really makes us nervous as we will be a good 30 minutes from the hospital God forbid something was wrong. They will hopefully move her to a regular room where she can finally take the shower she has been asking for since Saturday :o) The original plan was for her to have the sutures removed on Monday morning, 4/20 and then to catch a flight later that day for home. We are hoping for that to be the case but are making preparations to stay just in case she is not yet feeling up to traveling.

PM Update - Katie did much better today. After the occupational therapist came in this afternoon, we got her out of bed several more times to walk the halls of ICU. She was bound and determined to stay upright for as long as she could take it and she did GREAT! The pain was still there, the dizziness was still there, but she did it! Her surgeon came to see her this afternoon and decided that it would be best to keep her for at least one more night. They were going to move her to a regular room tonight but had not yet done so before we left. The ICU nurses were amazing and took such good care of her. As hard as it is for us to leave her at night, we know that she is in good hands. It is amazing to see how much she is improving every day. To think that on Saturday she could not even open her eyes or lift her head off the pillow, and today she was walking the halls, is unbelievable. We even gave her a shower this afternoon! She had been asking for one since Saturday and said she felt like a new woman afterward. Her incision looks to be healing nicely. It's much bigger than we first thought but unless you ask her to show it to you, you will most likely never see it.

4/15/09 - AM Update - Katie was moved out of ICU and into a regular room last night. She had a good nights sleep but seems to have more pain this morning than she had yesterday. The doctor was in this morning and said she is doing great. They are definitely going to release her today as he thinks she will recuperate better out of the hospital.

We just had her out of bed and she walked the halls of the 6th floor neuro unit. It was a much longer walk than yesterday but she did great. She is now using a walker and that helps her to stay steady on her feet. Now she is back in bed and fast asleep - these walks seem to exhaust her and they make her head hurt even more.

Hopefully our next update will be from the comforts of our condo in Scottsdale. We are hoping that she will feel well enough in the next few days to be able to sit out on the patio and enjoy the warm sunshine that we are having here.

PM Update - Katie was released from the hospital and is now resting comfortably in the king size bed at our condo!!! She is feeling great and eating some cheese and crackers as we speak. They sent her home with a walker to help with her balance and an eye patch to help correct the double vision. She keeps referring to herself as Katie Sparrow (as in Jack Sparrow from the Pirates of the Caribbean). Her scar is healing nicely. They only shaved about a 1" wide by 6" long strip of her hair and the incision is about 5"-6" long. If you ever want to see it, you will have to ask her to show it to you. It's quite a battle scar. She has an appointment on Monday morning to have the stitches removed and then hopefully some R&R by the pool for a few days before she flies home. You know how my sister loves a good tan!! Several cards and gift baskets have been delivered to the condo here and she was thrilled to read and see them when we came in. We on the other hand, (Mom, Dad and Suzie) were excited to eat something other than the hospital food we have been living on for the last six days!!

4/16/09 - Katie settled in to our "home away from home" nicely and is feeling better and better every day. Yesterday afternoon we walked around the complex here. It was a sight to see - Katie in her pj's, eye patch, crazy hair and a walker. Only a few people stopped to stare. She was feeling well enough on our return to sit at the table and eat dinner with us. This was a big change from the picnics we were having in her hospital bed. For the first time since this ordeal began on February 5th, we all slept great last night! I think we averaged about 10 full hours. It is such a relief to have the worst of this over and to see her improving all the time. This morning, after having breakfast in bed (again), Katie took a real shower. We are now getting ready for another walk as it is a beautiful day here in Scottsdale. Hopefully, most people will be at work so we won't have too many gawkers.

4/17/09 - It is now 11am Friday morning and we just got back from our first walk of the day. Katie did great although her eyes are bothering her more today than they previously have. We are hoping that it means her vision is on it's way back. I don't know if I mentioned in any of my first emails, but our brother Tim and sister-in-law Barbara were here and were able to stay through Katie's surgery. It was awesome having them here and they were so supportive not only to Katie but to Mom, Dad and I as well. Tonight, our other brother KC and sister-in-law Jodi are arriving for the weekend. Katie is excited and if you know KC and Jodi, you know that we are in for a lot of laughs. Unfortunately, our brother Tom had to work so he stayed behind in CT. He's been doing a great job of taking care of Katie's dog Roxy who she has said more than once that she can't wait to snuggle with her! We booked flights for Tuesday for Katie, Mom and Dad to fly back to CT and me to FL. We are anticipating that the doctors will say that everything looks great and she is free to go home and get on with her life.

4/18/09 - KC and Jodi arrived last night, Mom cooked a delicious dinner using a lot of the food from the gift baskets that were delivered and we all managed to stay awake until 9:30pm! Katie was excited yesterday because she "skyped" with several of her friends from the school where she teaches. She was as excited to see them as they were to see her and her spirits were definitely lifted. Katie had another good day today. We went for a few "pirate shuffles" around the complex and at one point even ventured outside the gates of our home away from home. We knew that Katie was well on the road to recovery when she suggested a trip to a local restaurant for a "skillet cookie" dessert. We had one last week when we first arrived in Phoenix and she did not want to leave without having another. The second time was as good as the first and we all left with our bellies bulging. Mom and Dad bought eye patches today and we laughed so hard that we were crying. We put them on and marched into Katie's room shouting out our best pirate bootie calls. Tomorrow we are going to mass at the chapel at St. Joseph's Hospital and then will lay low for the rest of the day. Monday morning at 8:30 she will see the doctor to have her stitches removed. We are all looking forward to getting home on Tuesday.

4/19/09 - We woke up this morning and Katie was feeling better than she had been so she suggested that we go to the Desert Botanical Gardens in Phoenix where they were having a Dale Chihuly exhibit. We had been talking about doing this ever since we arrived almost two weeks ago. It was a beautiful day so we all piled into our mid-sized rental car (all six of us) and off we went. As soon as we arrived, Katie said that she wasn't feeling well and she was just going to lay down in the car, but we should all go in because she knew that we really wanted to see it. So, we did what any good family whose daughter/sister just had brain surgery nine days ago would do - we left her in the car, in the hot Arizona sun and went in. It was AWESOME!!! Fortunately for Katie, the guilt hit us when it reached 92 degrees and we headed back to the car to make sure she hadn't melted into the back seat. All was well as she had chatted on her cell phone and taken a nap for almost the entire time we were in there. KC and Jodi just left and we were sad to see them go. We had a great time and a lot of laughs. Being with our brothers from Utah this past week made us realize that we don't spend nearly enough time with them. I hope we will in the future.

4/20/09 - Katie had her stitches taken out this morning and the doctor said that she was doing great. Other than being a little sore at the incision area and still experiencing double vision, she is feeling 100% better than she was just one week ago. The doctor we saw today, who was not much older than Doogie Howser, told her that she does have a titanium screw in her head but it's not big enough to set off the alarms at the airport security check. She has some restrictions but basically just needs to listen to her body and can do things as she feels ready. She has an appointment on Friday to see a neuro ophthalmologist in CT who can hopefully help her with the double vision. She did say that as soon as the double vision goes away she plans on having a nice cold margarita! It's amazing how far she has come in just 10 days. It doesn't seem possible that less than two weeks ago she was being taken away on a gurney for brain surgery. I asked her if she remembers anything from that day. The last thing that she remembers is all of us circled around her bed, holding hands and praying for her. I was glad to know that while we were a mess watching her being wheeled away, she has no recollection of anything other than how much we love her.

Friday, April 10, 2009

Phoenix - Part 2 - Day of Surgery

We awake at 4:30am. No one is speaking as we are all afraid of the day to come. Mom, Dad, Tim, Barbara and I have made a pact that we are NOT going to cry in front of Katie. I find this easier said than done and I bawl my eyes out in the shower. I am so scared. Scared for my sister. Scared for my family. And selfishly, scared for me. I know that this doctor is the best, but what if something goes wrong? What if something happens to my sister? What if she is in the 1% that are not successful?

We drive to the hospital in silence. No one speaks for fear of losing it. After all the fighting with the insurance company to get us here, none of us want to be here. We would rather be anywhere else. Anywhere, but here.

Katie checks in at pre-op and they tell her that they need another MRI. Apparently the one they did 12 hours ago wasn't good enough. Mom goes with her and Dad, Tim, Barbara and I wait in pre-op. The place is filling up fast with lots of people having surgery today. All for some type of neuro surgery.

After they bring Katie back, things start to move fast. All kinds of doctors and nurses come in. They ask questions, take blood, ask her to sign release forms, etc.

The anesthesiologist comes in and begins to explain what is REALLY going to happen in the operating room. This is when I started to lose it. He starts out by saying that they are going to attach electrodes all over her body because they will need to shock her every few minutes. When they do this, all her muscles will react and become rigid. They are going to strap her to the bed and clamp her head down. They will stick a towel in her mouth so that she doesn't bite her tongue because if she does, it can swell to ginormous sizes and turn black. OH. MY. GOD. I had to turn away because I could see that Katie was starting to cry. I could feel my heart pounding and my tears could not be stopped. I thought I was going to be sick. So much for not crying in front of her. We all lost it.

The hospital chaplain came. He told us that they have clergy on staff 24 hours a day if we need them. He spoke with Katie and tried to calm her nerves. They finally gave her something that they said would relax her. And then they said it was time to go. NO - we weren't ready! We all prayed over her, hugged and kissed her and told her that we love her. We reminded her that so many others are praying for her as well. And then they wheeled her away.

After standing in the hallway, all of us crying for what seemed like a long time, we went to the neuro waiting room. They gave us a pager and told us it would go off if there was any news from the operating room. We began to call, text and email family and friends to let them know that she was in surgery and to ask for their prayers. And then we waited.

It was amazing to receive so many emails and text messages from people that were praying for Katie. All day long people were checking in with us. People we knew, and people we didn't. We kept our family and closest friends updated via email. They forwarded our emails and then those people forwarded our emails. I can't even begin to imagine how many people, prayer groups, churches, etc. were praying for her at the very moment that she was having surgery.

Since surgery started at 9am, we knew that it could be 3pm before we heard anything. At about 2:30pm I started to freak out. I was pacing in the waiting room. I went out to the hallway because I felt like I couldn't breathe. I started to cry and couldn't stop. Dad and Tim both tried to calm me down. We were all stressed and just wanted to know about Katie.

We went back into the waiting room and noticed that one of the doctors that we met was in there calling families one by one to give them updates on their loved ones. After about three families were called, my Mom couldn't take it any more and asked about Katie. They brought us into a smaller, private room and when we got in there, Dr. Spetzler was there. He told us that "Katie did great and the surgery could not have gone any better"! Once again, we all lost it. She was in recovery and we would be able to see her within the next two hours. Praise God!!!!!

They let us in the recovery room for about a minute to see her as she was waking up. She was pretty out of it but looks GREAT!!!! They took her for a CT scan and then moved her up to ICU at about 5:30pm. She is in a lot of pain and they are trying to get it under control. She will be in ICU for at least one day, maybe two and then they will move her to a regular room. During the few moments that Katie was aware that we were there, she was asking questions like how long did the surgery take and did we keep our family and her friends updated!?!?

They said the next six weeks were going to be rough on her. Much worse then after she had the initial stoke. The worst is over. We can deal with whatever comes next!

Thursday, April 9, 2009

Phoenix - Part 1 - We arrive

4/7/2009 - We made it to Phoenix for Katie's surgery! My brother Tim and sister-in-law Barbara came from SLC, picked me up at the airport and we headed for the condo to get checked in. Katie, Mom and Dad arrived a few hours later. It was great to finally be here but knowing what was ahead was on all of our minds.

My parents rented a beautiful, two bedroom condo in Scottsdale. It's about 30 minutes from the hospital that Katie will be at and they thought it would be much better for her to recover here than in a single hotel room.

4/8/2009 - Dad got tickets for a Diamondbacks game and we thought it would be a good distraction to get our minds off the upcoming surgery. Unfortunately, Barbara was sick and didn't come with us. We had a great time and a lot of laughs. We drove by the hospital just to make sure we knew exactly where it was and where we needed to go tomorrow.

4/9/2009 - Katie has her pre-op appointments today and then meets with the doctor this afternoon. Tensions are high this morning and none of us are looking forward to it. On the drive to the hospital, Katie starts to cry. My heart is breaking for her and I start to cry. Is this really happening?!? Is my sister really about to have brain surgery?!?!

We arrive in pre-op and are met by some really wonderful nurses who reassure us that Dr. Spetzler is the BEST in the world and that people come from all over to see him. The nurse that took care of her was named Rachel and I take this as a good sign as my best friend is Rachel. This makes us all feel better. Not really.

After lunch we all head to the Barrow Neurological Institute to meet with the famous Dr. Spetzler. He briefly explains what will happen tomorrow, introduces us to another doctor that will be in the operating room and asks if we have any questions. We do, but can't seem to remember all of them. He assures us that he has done this many times before, 99% are successful and because of Katie's age and good health, he does not foresee any problems at all. This makes us all feel better. Not really.

After meeting with the doctor, we are off for Katie's final pre-op appointment. An MRI. The waiting room is dank and dirty and we can't wait to get out of here. We met an older couple and the husband was having surgery in the morning as well - with Dr. Spetzler - at 9:00am - the same time as Katie! WTF?!?!?

Katie has to be back at the hospital at 6am. The surgery will start at 9am and will last 3-6 hours. We are told that she will be in ICU for at least 24 hours after that. OH.MY.GOD. This is really happening. None of us will be able to sleep tonight. Of this I am sure.